Cancer Survivors Network

My doctor said the same thing; 90%. I am very fortunate they found it early and it was contained in the kidney. Thank you for your support. I am looking forward to a great summer.

Give yourself time. The body takes a while to adjust to one kidney. The other one has to process lots of fluid, the liver slows down. You had anesthesia and the body takes time to get over that, too.
I had RCC-radical nephrectomy 3 years ago. People who ask how you are doing really do mean well; but are coming from a different point of view. They want to hear that you are doing well, recovering, and all the other stuff that makes them feel warm and fuzzy.
If you can find a cancer survivors support group -even on line here- it can help. They know what you've been thru and can offer encouragement.
Hang in there and good luck.
Donna

Thank you so much for your encouragement. I have read some of your other postings and can tell you have been through a lot. I am so glad you don't have to have another surgery and can enjoy your summer!

I had a radical nephrectomy in 1981 with a tumor the size of a football. They take out the adrenal gland and that has a lot to do with your feelings. You need to take awhile to heal. They went through lots of soft tissue and removed a major organ. You might try visualization and/or meditation plus a good diet and some vitamins. It took me awhile to feel better. Mine was radical and I was surgically cut from my sternum to below my belly button..but 30 years cancer free now!

I wish you all the best with your chemotherapy. I thank God everyday that my cancer was contained to the kidney.

Hey I had my right kidney removed 5 years ago in August. They said it was all contained but still I hold my breath with every CT scan. This July I will have an MRI and Chest X ray. I feel like I'm over the hump but every once in a while I get a little freaked out wondering if it in manifesting somewhere else........Only to be an incidental finding like the first one was.......I was only 47 when a hysterectomy lead me down this path....I really think that sometimes we all need a good awakening to really realize how lucky we are and how each day is special! Now I'm wide awake!

Live, Love and Laugh!

Lisa

congratulations on five years cancer free. that must feel good.
do you mind if i ask is there a reason you switched from ct scans to an mri. and has your dr. always done a chest xray instead of ct scan of chest.
thanks for the info. i'm just 6 mos. from surgery. just had my first scans (chest and abdomen and pelvis)and everything was good. thank God.
mine was also found on an ultrasound of my ovaries.
continued good health to us all.
corey

Five years is awesome, congratulations! Maybe you could answer a question for me. Is it important to have an oncologist? My urologist has been handling everthing. He never advised me to see a oncologist. He sent me for several CT scans and a colonscopy before the nephrectomy to make sure it wasn't anywhere else. Post surgery he said I need a chest X ray in October and a CT scan one year from the surgery date. Does that seem correct?

wendyleigh,

My husband's urologist handled all the scans before surgery. He walked us through everything and performed the operation. The tumor and my husband's kidney were removed and we received the pathology reports all through the urologist. The tumor seemed to be contained. Post surgery the urologist handled all the chest x-rays and CT's. We were never advised to see an oncologist either. Everything you have been told is exactly how we were advised. Only when my husband's kidney cancer showed up in his lungs were we guided towards an oncologist. It sounds like you are on the right track to me!
lily33

For what ever it's worth, my Urologist/Surgeon referred me to an Oncologist just prior to my surgery. I am pretty sure the key reason for this was that my Urologist performed a cystoscopy (same-day surgery procedure under heavy sedation) three weeks before my radical nephrectomy, and during this procedure he also took three biopsies. The resulting pathology report showed transitional carcinoma. My Urologist told me that these findings pointed to a high likelihood of needing chemotherapy shortly after surgery, because it was now confirmed that the cancer cells were not confined to the tumor attached to my right kidney.

After my surgery, I asked my Urologist who would now be taking the "lead role" in my ongoing treatment and he said "the Oncologist". I returned to my Urologist 2 weeks and 4 weeks after my surgery for post-op check-ups and will see him again this fall, but only as a follow-up to re-inspect my bladder.

If my cancer was confined to the tumor along with the affected kidney and ureter and the surgery was able to "get it all out", then I doubt I would have been referred to an Oncologist.

I hope this information is of some help to you.

Dave

Thanks guys. I feel much more comfortable about everthing. It is nice to hear from other people that have these experiences.

I just got home from a lovely and relaxing camping trip to the Oregon Coast. This morning I went to have my blood drawn for my yearly scan.....My Urologist has handled everything since the surgery as they have a team that meets ( including onocologist) and they felt there was no reason for me to see an onocologist at any time during my 5 years. I go in yearly to have a chest x ray and CT scan. He wanted me to do an MRI because I guess there is not as much radiation????? I go in next Thursday for the works. Hopefully it will be like the other times where they really don't find anything suspect. I have had a couple of spots on my liver that they have watched but so far they seem to be just cysts.......Keep your fingers crossed. I'm not sure what the follow up protical should be now since I know that with RCC it can appear anytime down the line. Any suggestions?

Have a great weekend>

This is the end of my vacation and my husband and I are joining friends in Packwood WA to do some hiking, relaxing and lots of laughing.....back to work on MOnday!

Lisa

First of all the only thing is mine was on the left and found on a fluke.I was having a CT scan done to see if my heart was throwing clots(Angio09)and they found it like that.Then the first attempt woke-up on a ventilator(severe allergy to latex unknown to me)to have it finally done 3/15/10 and I'm just so full of gratitude.I don't wear pants now because it rubs against the scar,we will soon forget what we lost and live in what we have and that's life and that's how I'm doing this thing. I real good friend told me to stay in the moment and make the best of it.Hope this helps you to cause it surly gave me peace

I just read your story, and it sounds a lot like what my father is going through. Can I ask how you are doing, and how life is going for you now? My father is really depressed, and besides the realization that he has cancer now, we have the unique situation that we have not yet been able to see an oncologist, and we are staying in a hotel, and in another state. Because of the unknown, we dont really want to head back to Alaska without an questions answered. I think my father feels like he has weeks to months, and I dont think that is the situation.

Mahalo for any advice!

Melinda

I had a radical nephrectomy on July 23, 2009 after the kidney mass was discovered the end of June. The last 3 months have been surreal as well as scary. The stage 2 tumor was removed completely encapsulated in the kidney. My doctor was able to do hand assisted laproscopic surgery so my initial recovery has been fairly good. I was in the hospital for 4 days and have been able to get dressed every day since I came home. I've been able to get out but my energy level is somewhere around my ankles. Some days I'm so wiped out I can't eat let alone do anything productive. My doc said that it will another 2 months before I'll feel truly better and a year to heal internally. I didn't realize the extent of the trauma to the body.

As long as the cancer has been removed I'm OK. I too will be monitored, scanned and tested for the next 5 years. Right now it's every month but should spread out soon.

I too run into people who are "surprised" that I'm up and out "so quickly". Sometimes I wonder what they expect -- a sign around my waist saying " my left kidney has been removed due to cancer" and my hobbling around.

You should take comfort in knowing many of us have or are going through the same things as you.

Good wishes to you and the others who have responded.

I have been reading all the postings on this site and really appreciate everyone's stories and comments. I have spend the whole summer just going and going. It has been great although I am feeling a bit worn out at the moment. I go back to the doctor in the first of Oct and will have some tests to check to see if the cancer has come back. I am keeping a positive attitude. Tictic1: I know people say whatever comes to mind. They really just don't know what to say. I'm sure you would just like them to say you are looking good and leave it at that. How are your treatments going? I hope you are getting rest. Do you have young children to take care of? Please take care of yourself.

I had a radical nephrectomy on July 23, 2009 after the kidney mass was discovered the end of June. The last 3 months have been surreal as well as scary. The stage 2 tumor was removed completely encapsulated in the kidney. My doctor was able to do hand assisted laproscopic surgery so my initial recovery has been fairly good. I was in the hospital for 4 days and have been able to get dressed every day since I came home. I've been able to get out but my energy level is somewhere around my ankles. Some days I'm so wiped out I can't eat let alone do anything productive. My doc said that it will another 2 months before I'll feel truly better and a year to heal internally. I didn't realize the extent of the trauma to the body.

As long as the cancer has been removed I'm OK. I too will be monitored, scanned and tested for the next 5 years. Right now it's every month but should spread out soon.

I too run into people who are "surprised" that I'm up and out "so quickly". Sometimes I wonder what they expect -- a sign around my waist saying " my left kidney has been removed due to cancer" and my hobbling around. Who knows.

You should take comfort in knowing many of us have or are going through the same things as you.

Good wishes to you and the others who have responded.

I had the hand assisted laparoscopic. I can't imagine what you are going through. My doctor told me how they use to do them and how much longer the recovery time is. It hasn't been very long since your surgery. I think my doctor told me 12 weeks and you should be about 95% and a whole year before you reach 100%. I am sure your recovery will take longer since they had to cut you open alot more. Not to mention they nicked lung. I hope you are doing better. Take care.

hi everybody, 25 days ago following a wreck on my harley due to leaves on the road a ct scan in the e r discovered a 5.1 cm mass in my left kidney, i am scheduled for a lap rad nephrectomy tomorrow with the expectation that it will be cancer. so far all the tests indicate that it is contained and i am optimistic but after reading your posts my spirits have been lifted further just knowing that there are people out there that "really" understand. rcc has touched my life through friends and family 7 times in the past so i am very aware of how fortunate finding it early (by accident)is.

best of luck to everyone & i'll saty in touch,
Gary

I wish you luck on your post op surgery. I had radical nephrectomy r kidney on 6-29-09. 4.0 cm. took me 8 weeks to feel better. i'm a cyclist and was on my bicycle 5 weeks after surgery. only for a short spin. did a 50 miler 2 weeks ago. still get very tired and it's been nearly 5 months. the first 2 weeks are the worst. just taking a shower and moving takes its toll, but you do get better day by day. some days no discomfort at all, but wheni kick up the exercise, i feel discomfort for a couple of days. my incision sites are still sore. had hand assisted lapascopic. keep us posted to your recovery. i wonder if people still experience discomfort 5 months after surgery.

Thanks Anita, I'm back at work part-time and doing well. The mass was RCC and the pathology report was excellent with no evidence that it had spread anywhere outside of the kidney. As I understand it a left side nephrectomy like mine is a much less involved procedure than the right side like yours because of the other organs that have to be dealt with so I find 50 miles on a bike to be a pretty impressive feat all things considered. I'm a walker myself and back up to four miles a day, it takes as long to walk four as it used to take to walk six and I'm really tired and sore after but it feels good to get out and go. Hang in there.

I was looking for someone that might have gone through "the Gold Standard" because I am due to have surgery October 7th. My doctor already prepared me that she will have to cut me open. I want to know what to expect cuz doctors never seem to give enough info. Atleast in my case... It infuriates me that doctors can be so insensitive. I can completely relate with your experience. I felt like my doctor was leaving me to die when I told him I would not accept blood! He told me "Well even if we do surgery most RCC patience die within 2 yrs. Until I started to complain to everyone that would listen I was finally referred to a hospital that specializes in bloodless surgeries but Where is the compassion?

It's nice to hear your humor and positive outlook inspite of everything that you've been through... that's how I try to deal with it.

Thanks!

My youngest son was diagnosed with Hodgkin's disease right before his 27th birthday. He went through chemo and radiation and is now considered cured but he said that for him at least being scared especially before scans never goes away, it just becomes part of who you are and actually helps you deal with all the non-life threatening issues that come on a daily basis (he has 4 small children so there are lots of those). My personal fear factor is very low, I am wired such that I don't worry much about things that I cannot control, I spent a month wondering if I would get to watch my grandchildren grow up but found I was wasting valuable time and decided to be as involved as I can with family and friends for as long as I can. I will be getting regular scans and if/when it returns I will concentrate on it then.

From what I've read the odds of RCC coming back in your other kidney are very low and I'm guessing that is why yours Docs are saying to wait. I'm not sure if a partial nephrectomy is an option for people like us but you might check it out.

Keep on fighting!!!

For about 5 years after my surgery I did not like too talk about my cancer surgery and the removal laproscopically of a 2,7cm tumor. Now 7 years after surgery I am proud of the fact that I am a Cancer survivor and wear that as a badge of honor. My advise to the newly diagnosed is that fear is normal, but if you are in the 60% or so who have the surgery before the Cancer spreads you have the balance of your life to live with few if any restrictions Next week I am going on my 8th annual cruise. The first was booked the week after I got out of the hospital. I am 66 now and intend to go on many more cruises or other vacations. At my last check up evrything was normal and the doctor repeats that I will die of something else.

hello
just signed up. I am on other kidney forums and felt the more the better. my name is the street address where I grew up in case there are any Bronxites here.
August 27th '09 had my left kidney and 4 lymph nodes removed. 12 cm tumor - papillary rcc. going in the docs said there was a possibility that the spleen, part of the pancreas and possibly a section of the bowel were to be removed as well. happily none of that took place - "only" the kidney and lymph nodes. in the run up to the surgery they discovered mystery spots on the lung that still have not been defined yet they seem to be shrinking and while we are still monitoring them the consensus is they are the collection of 70+ years of living. I have this really gross incision down my abdomen that makes a left turn above my navel and heads towards my left hip. no more swimming bare chested (I am in southern Florida)...
I had two CT scans and a Pet scan since the surgery and am scheduled for another CT in March. I went to Johns Hopkins after the surgery for a second opinion. like others here I was told that there is no follow up treatment once they got all the visible cancer out. I was offered a trial that I refused because at my age. I felt protecting the other kidney from possible damage without knowing if the drugs were effective - or if in fact I was receiving the drugs instead of a placebo - was not worth the side effects and putting my one kidney in jeopardy. the doc at Johns Hopkins told me I have a 75% chance of recurrence because the cancer was in the lymph nodes. I think it is also because papillary RCC is a different beast then clear cell.

I got back to playing tennis three months after the surgery and am living a "normal" life with no change in diet or activities - except I nap more often. so I am in the watch and wait club. I now see an oncologist, a urologist, an internist, a thoracic surgeon and a cardiologist (another long story) all because of a back ache that I had in July that showed up as a mass on my abdomen after taking an MRI. back ache went away - and so did the kidney
Love to hear from others on what they are doing. and glad to share if I can help anyone.
be well, Rich

Hi. Glad to have found you though not for the usual reasons. My husband started having backache some time ago (a year I think) thinking it was the rattan reclining chair which was also tearing in some parts. It wasn't clear, he just felt uncomfortable. This year, he lost alot of weight because he had been dieting. Had glucose test done and was told it was very high. So he thought the gastric was connected to this.

When he started feeling uncomfortable after eating, he was referred to the hospital. As you can guess, our worst nightmare began. A CT showed a 10cm growth in his left kidney that was partially covering the spleen and pancreas. Urologist took a long time with his words - I almost thought, going by his body language,that my hubby was not even going to make it out the door. He said that they would most likely have to take out the kidney, spleen (partial pancreas?). But he said the bigger problem was whether it was coming from the adreanal gland and also they might have to do a graft on the artery.

Anyway, we will be getting the biopsy result this Fri. I remember him saying it was a stage 4. What does he base this on? Why are we doing a biopsy if his chances are so flat? I even remember him saying that if during the operation they see that the growth does not touch the spleen and the pancreas, then it'll be like striking a lottery and will be straightforward. I thought he could already tell from the CT scan with his negative prognosis and body language. I hope someone can explain this better. I find more comfort here than infront of the dr because there are things I just cannot bring myself to ask him, what more with my hubby sitting there in the same room. Pls help. I can't sleep and eat and I think I'll be sick soon.

I am 40 and I just had an open radical nephrectomy done on my left kidney on the 9th April 2010. A renal carcinoma was found thorugh an Ultrasound by chance when I went in the hospital for my Gallstones problem.The radiographer checked my gallbladder and my kidney too. After a CT Scan, it is confirmed that I had a mass lesion which doesn't look good on the film. My Urologist said that the growth looks very suspicious and cancerous and the size was about 14cm. So an operation need to be done to remove my Gallbladder and my left kidney. After a bone scan and a CT scan, I thank God that the cancer cells has not spread but contained in my kidney.
I can walk on the 5th day.I was discharged from the hospital on the 14th April (after 6 days). During the stay in the hospital, I was given a strong painkiller called Ultraset which has a lot of side effects such as vomitting and constipation. I have very little appetite and my diet at that time consists of liquid food.
I was sent home but on the 20th April, I was re-admitted once again to the hospital but this time, I experienced severe pain in my somach (not my op wound) but bloating and pain.I was sent to the ER as my blood pressure dropped to 90/50...dangerous.An X-ray was done and the doc found out that there are alot of gases formed in my intestine. I was put on drip for 3 days and was asked to fast for that duration. You see, during my first op, my intestines and bowel has been moved and has caused my intestines to stick to each other during the course of my operation. The movement has caused the intestine not to expand and contract normally therefore causing the food and gases beng trapped in the intestine.
After 5th day in the hospital, an X-ray show that my intestines has settled and went back to normal. Liquid diet was introduces and on the 6th day, I was given soft food. I was discharged on the 7th day and ate normally on the 9th day, Hallelujah...
I went back to work after 7 days out from hospital. My op wound healed very well and I just bought an post operation binder to put around my stomach to support the muscles. I still feel some twitching of pain when I sneezed or cough. I can't lift anything heavy yet.
My Church and my family were praying for me during the course of the episode. My spirit was up during the duration and I was very encouraged that God has given me a speedy recovery. Now I am living with 1 kidney and no gallbladder. The cancer did not spread but follow up with Oncologist will be done in 6 months time. God bless!

Whenever I read someone else's recovery I try to compare it to my own. but no 2 are the same. Andy you sound like you are on the right tract and at least your surgeon did not write a joke on your discharge summary like mine did, " that I was discharged without pain". It is good to have good family spiritual support as my sister-in-law is also from Malaysia where family is very important.

Imagine my relief when I saw yr post after mine. May I have yr contact so that my husband can talk to you for some moral support? Thanks.

In reading thru these posts you will see a wide range of recoveries. You are young so yours should be easier. However this is an operation not a procedure so be prepared for a little downtime. I went watersking the summer after my surgery and I was 59 then so I expect nothing less from a 26 year old.

Thanks Icemantoo for being a positive realist and my role model; tomorrow I'll have my left kidney removed along with its tumor. Evidently the tumor is too big for laproscopic, so it'll be the big slice, so my recovery will be longer; I'm 59 years old and to hear that you waterskied the next summer is great. Keep posting and take care everbody.

I am 51 years young. I found out May 5th 2010 that I had rcc in my right kidney. The only symptom was about 2 months of low grade fever, every day. My CT scan showed a 13cm carcinoma of right kidney.I had surgery May 10th 2010. The surgeon said it was bigger than they thought. I still cant wear pants all day, due to swelling. I hope that goes away soon. I still have a little discomfort but it something I can deal with. I thank God, and my great doctors for taking such good care of me. It might come back, but for right now I am cancer free. I had stage 2 . Hope everything is going good for you, and that it will soon be behind you.

Thanks icemantoo for the response and for the encouraging words. I wouldnt water ski if i was healthy so that fact that you were able to do it after surgery was very encouraging lol. Well tomorrow is the big day so everyone wish me luck and i wish you all a very health and strength.

Tommorrow morning I am joining other survivors in our local Relay for Life. In 8 weeks it will be 8 years since my surgery. I am starting to accumulate the free survivor t-shirts given at each of these events )I gotta be entitled to something for being a Survivor). Not quite as exciting as waterskiing the year after my Surgery, but I was only 59 back than and at 67 I will probably try something easier like zip-lining next winter on one of the Caribbean Islands..

Hello, I gather, you are just recently home from hospital. I had my right kidney removed 6-29-09 and i was was 2 months shy of my 49th birthday. no history of cancer in family. was diagnosed with stage 3 RCC. urologist thought stage 1, but pathology came back stage 3 because cancer had begun to invade the sinus fat inside my kidney. had radical nephrectomy. no sign of cancer in ureter to bladder, no sign in renal artery and vein and no evidence of cancer in tissues and fat surrounding kidney. had 6 month scans done december 2009 and all clear, except a growth was found on my thyroid, but after a biopsy that came back negative. i go in, in a few weeks for a chest xray, blood work and another ultra sound on thyoid to make sure cyst is not growing. i feel good, still cycling and did 110 miles last week. incision still sore and i get phantom pains where incision and area where radical done. told by my urologist could occur up to 2 years. i see an oncologist for my checks. i wish you luck and a speedy recover itingle. it is a very scary time and not a day does not go by that i do not think of my cancer. i am told that eventually with time you think of it less and less.

Good Morning I am scheduled to have my right kidney removed 6-29-10. I'm a mail carrier, I've carried for 22 years, I'm 43 years old It's so encouraging to hear the testimonies from so many that has went through the same thing. While I'm out of work that will give me a litte time to priorize things in my life. Has the result of the surgery made any one make any drastic changes or just merley adust?

Crissoid. Make sure you take sufficient time off to recover from the surgery , like 3 to 6 weeks. Unless the Camcer has spread there should be no changes in your lifestyle/ The fact that your surgery is not being done immeadiateky is a good sign in that regard. But do sit out the 4th of July weekend.

Greetings icemantoo and everyon on the board, the surgery was Tuesday and I just got home about 20 minutes ago. The tumor in up being larger the 7cm ofcourse don't know the details yet but will know soon. Lost a quite of bit of blood only needed 1pint thank God. The cut isn't all that bad the pain is decreasing but the numbness in my belly feels crazy! To God be all the glory all went well thanks for all the encouraging words on this forum you guys helped me more than you all will ever know.

Crissold, now that the big part is over (the surgery) it is going to take 4 to 6 weeks to feel normal. It does get a little better everyday. Your body just had major surgery so relax .

Thanks again icemantoo; I'm 6 weeks past my surgery, and life goes on. Certainly the removal of an organ is not to be underestimated in the total effect it has on your metabolism, not to mention the trauma to your insides. But we do heal. I'm grateful to be walking in the woods every morning, stopping to rest more than I used to. I'm now the old guy I used to blow by when I jogged. Humbling. I feel a bit anxious when I think of my next cat scan and tests that'll be end of August. What's to be will be. Meanwhile the little things I do, like the chopping and dicing of onions and bell peppers for my family this evening, seem to take on a special meaning. I like still contributing to whatever needs to be done. It was hard to be a patient.

It took me years to openly discus my Cancer with others let alone be on a discussion board trying to help the newcomers. This now is my therapy trying to give honest positive answers to those with similar experiences like mine. I like getting on these boards about smoking in restauants and bars and how I never smoked and the leading cause of Kidney Cancer is smoking. While these smoking idiots talk about losing their rights because they can't smoke in bars and that we are losing our freedom because Michigan where I live just banned smoking in restauants and bars. The smokers never seem to want to respond to my story only to talk about their selfish desire to pollute our air with various carcinogins and that those of us that do not want to enjoy their carcinigens have the freedom to not enter these restaurants and bars. If we really want to do something about Kidney Cancer and other Cancers for the next generation let us work to ban smoking across this country (Canada too, but they are ahead of us). OK so I went a little off tangent, but I care about the world I am leaving for my children and grandchildren.

hi icemantoo!! I'm new on this site and just wanted to let you know how much I appreciate this info you provide here. I'm also fairly new in recovery (8 weeks) and everything you share here is great info and insightful for recovery. One thing in particular I didn't know was that smoking is linked to kidney cancer. Again,thanks for letting me know.

I read that you told somone to plan a vacation so I too am taking that advice my travel agent is booking me a florida trip to the Holy Land Experience in Orlando, round about the fall. Thanks for Everything you are like the leader of the forum!!!!!!!!!!!!!!!!!!!!!!

Hello. I also had RCC at a very early age. I was dx'd in 1999 with RCC on my 20th birthday. Had radical right nephrectomy and have gone on to have a child, finish college, and start my career. I'm 11 years cancer free and have had very few problems. Good Luck with your recovery!

My very first time on the site....you can take tylenol,,,,,not motrin (ibuprofen) or any other NSAIDS.....have to look up the full list online.....but more than one doctor has told me to not take those due to only having one kidney now....

As I have said to others a Nepherectomy is an operation not a procedure. Having been there and done that here are my thoughts from a 2.7 cm Laproscopic Nephectomy back in August, 2002.
The swelling is not going to completely go down for up to a year. Two and one half weeks is too early to go back to work full time. With 3 months behind you , you should have most of your strength back. It is still going to take a few months to get all of your stamina back. My high point was almost 11 months after the surgery when I went water skining and stayed up for the whole run. I was 59 then and am not sure I can do that again with 67 approaching next week. Do what you can when you can as you are never going to get younger. My hope for everyone on this board is that Kidney Cancer is but a bump in the road and that we will all die 20, 30, 40 or 50 years from now of something else.

I had my radical surgery on June 29th came home July 4th I go outside and walk around my building one or two times, that's it. the rest of the day I walk from my chaise lounge to the computer. I go for my first check up tomorrow, my sister won't let me do anything she is scared I will Keloid. So I'm a hostage in my own house, they don't want me bending, twisting, reaching over my head,too far or anything and that's my family with those restrictions, so jazzykim take it easy listen to icemantoo and others. I'm not getting a dime of income yet, but that's not even going to rush me back to work, as I was told the mail can wait! Our health is way more important than these jobs. So easy. okay. When I'm tired i take a nap. Try it boy it works.

I hope as a result of your absence that they do not use your absence as an excuse to raise the postal rates.

I'm so sorry to say it but stamps will be hiking up to .46 in January I doubt i had any thing to do with it.lol I so agree though it SUCKS!! But the Great News is I went to the doctor today the tumor was 11cm but Cancer Free thank the Lord. The only thing my doctor said I can do is walk, He does'nt want me to ride, nor drive in a car. Let the inside of the incission heal he said. I go back Aug 30th for my check up to possibly go back to work, but i am planning my vacation for october. Thank you everyone on this forum. Having the internet helps keep back cabin fever. Icemantoo you are so encouraging may God bless you and your family. luv ya

Hi everybody, I visit the board often and don't comment much but felt it was time for an update. I'm 59 and never smoked, I'm 8 mos. post surgery (left side) and had my 6 mo. CT 2 mos. ago which was clear. My Dr. said there is a 10% chance the cancer will return, I see that as 90% that it won't. My cancer was found very early because of an accident I had on my motorcycle, a CT in the ER caught it. My condition and subsequent recovery was complicated by the injuries from the crash but my Dr.'s advice was to keep moving and try to do a little more each day. The day after I got home from the hospital following 2 surgeries I walked a mile, it took my 45 minutes, Ive walked nearly 1,000 miles since and never looked back. I just completed my first mini-triathalon with my cancer-surviving son at my side. Icemantoo, I live in Michigan as well and have been an avid water-skier my whole life, while broken bones kept me off the water this year I will be out there at 60, and I will walk my first survivor's walk in our local relay next month. As I read and re-read this board I am struck by a common thread we all seem to share, a positive attitude. Stay strong everyone and keep on fighting.

I did not know of any 59 year old non smoking Kidney Cancers named Garry besides myself until now. I was 59 then, but am 67 now.It is nice to see the positive attitude is contagious. Our only difference is that I spell Garry with 2 r's.

I don't suppose you ride a Ha"rr"ley too do ya? Seriously though, you take the lead on this board when it comes to being positive and providing encouraging feedback, its nice for us newbies to hear from someone that has survived and is doing so well years down the road. Thank you and keep up the good work!!

Just signed up so I could post. I have been reading these posts for awhile. First, thanks for great info from those who have been there! Most of my questions have been answered by previous posts.

I have a 3.7cm tumor on the left kidney suspected to be RCC. From the CT scan, appears to be totally contained, but too big and too central to consider partial nephrectomy. A few things I'm wondering about:

I haven't had any symptoms, other than some slight deep aches in my left flank area. I kind of wonder though, if some of the fatigue I feel might be from the cancer. I am 54, and have learned to accept that a certain amount of pain and feeling tired is just part of the deal. Not sure how to tell how much fatigue is just normal. I guess the real thing I'm wondering about is whether I might actually feel better, more energy, etc, after recovery from surgery, due to not have the cancer in me any longer.

I have also had borderline hypertension for the past 7-8 years (about as long is this thing has been growing on my kidney.) When I first thought this might be a cyst that could be removed (from an incidental MRI that triggered the discovery), I was encouraged to read of several cases of kidney cyst removals resulting in lower blood pressure. But a little discouraged to learn that kidney removal can result in higher blood pressure.

Just wondering if your nephrectomies seemed to cause any change in your blood pressure?

I am in good health (unless you count probably having cancer). Ran 3.5 miles a few days ago and did some weights. I've set a goal to exercise at least every other day up until surgery. I am thinking that being in the best shape possible will help with the recovery, and help offset the non-exercise/activity recovery period.

My job already allows me to Telework 2 days a week. I have scheduled 2 weeks of sick leave, and told them I would play it by ear after that. I can telework full time or part time for a few weeks as a transition, also. I'm sitting on 1100+ hours of sick leave time, so no need to feel rushed to returning to work.

However, I do play guitar in a band. And if possible, I'd like to play a band gig about 1 month after surgery. I will shirk all of my "roadie" work. And sit in a chair if necessary.

According to my doc, about 3 weeks afterward I should be able to do most things, short of lifting heavy weights. Some of the things I've read make me wonder if that is a little optimistic.

Feb. of next year, I will be sailing in the Carribean.

For now, feeling fortunate to have caught this before it grew larger and spread.

Thanks!

To: RichGtr; My blood pressure has always (30 plus years) been high but has been under control with medications for the last 30 years. I do not recall any problem this caused before or after my kidney surgery in 8/2002. I do recall the surgeon ordering a full physical before my Surgery including an EKG but I believe that is just a CYA procedure. I did have some pains that went away after surgery. I also went to the Caribbean 6 months after surgery. As far as your recovery timeline it sounds a little optomistic. Two weeks after surgery I went to work only a couple of hours a day. You are 5 years younger than I was, but your tumor is a little bigger raising the possibility that they may not be able to remove your kidney and tumor laproscopically and may require a larger incision. You may not fell like playing a band gig 30 days later. To your full reconery; Icemantoo

Thanks for the reply, Icemantoo.

So, no real change in the BP either way. That would be a good outcome. I've been controlling mine through diet, exercise, weigh loss, salt restriction, etc. Still sometimes a little high, like 145/85. I'm just hoping this doesn't push me back on BP meds.

Are you a sailor? I'm going on a charter in the BVI in Feb. Looking forward to that!

If something forces them to abandon lapro, then all bets are off as far as my recovery. I'm basing my 'plans' on lapro. But, yeah, I realize that could change. Seems like 3.7cm is relatively small. But I've seen quite a few accounts finding a larger growth than what they saw on the CT.

I plan on taking two weeks totally off. On the 3rd week, I don't feel ready, I'll take another week, off. If I feel up to it, I will Telework part time.

I'm a little nervous about the band gig, but I hope to do it. It is a couple days shy of 5 weeks.

I totally understand your feelings and questions. I am scared about the cancer, and equally about post surgery recovery. The tumor was found on my right kidney after trying to track down why I felt like I had a kidney infection, but had urine with no bacteria. The urologist said the tumor is about 4 cm and appears confined to the kidney and he thinks (80-90% sure)it is early stage renal cell carcinoma. I have to have an open procuduere the old fashioned way because it is so deep (maybe another way of saying I am "thick" in the abdomin) and the blood supply so extensive. He also said that he would have to remove a rib in the process. This is at Mayo Clinic, so I trust him, but it sure sounds overwhelming. He stated that at Mayo, they had done research and found that the survival rate was improved if part of the kidney could be spared. So that is the plan. It is only on this board that I have found real people talking about their experiences and what can realistically be expected post surgery. The only thing the urologist told me was that I would be on "narcotics" and would not be able to lift over 10 pounds, but could otherwise do what I felt like doing.

I am finding it hard to sleep and then when I do go to sleep, to stay asleep. All these questions keep going through my mind. These posts have been very helpful.

Thanks to everyone.

ConnieH40, I wish I could tell you that the surgery does not hurt. But I can not. There is no way to sugar coat the surgery, but things do get better. This is major abdominal surgery, not a procedure. However it sure beats the alternative. I am 8 years post surgery and I view the surgery as but a bump in the road. If they are able to get all of the Cancer out then there is no further treatment. No chemotherapy, no radiation. No medicine. The first 10 days you are going to feel really sore. You wont even be thinking about lifting 10 pounds. From there everything is uphill. My surgeon wrote on my discharge summary 2 days post surgery that I was discharged without pain. Not quiet accurate. Every body recovers a little differently. Eleven months after surgery for my 60th birthday family reunion I went water skiing. In 3 years I will be 70 and maybe I will try water skiing again.

To: RichGre, I see your surgery is one day after mine. It is my right kidney. I just had a surgery 30 days ago to remove my appendix thank God they found this on the same CT Scan other wise may have been on stage 3 or 4 in a couple of years. I will be praying for you and your surgery to go well. Both of us will be going to be recovering at the same time. They are taking mine out from the front making the 8 to 10 inch cut. OUCH! God will be with you. My surgery is 08/30/2001 at 1:00 PM.

Johnny B.

Hi Johnnyb,

I had the date wrong when I posted that. My surgery (Hand Assisted Lapro Radical Nephrectomy, left side) is actually Monday, 8/30. Also at 1pm. I check in at 11am, with surgery scheduled for 1pm. I'm in the central time zone (KC area).

I've had this scheduled for a month. Kind of "abstract" for a while. But becoming a little more real every day. Just had my pre-op appointment yesterday. I had been attempting to keep up a good exercise regime to help with my recovery. But, it seems like exertion (running, hiking) make the back pain flare up(like a deep, deep cramp.) So curtailing that now.

In my case they are not 100% certain it is RCC until they get the kidney out and have Pathology check it out. But the doc is at least 80% certain it is cancer, based on the appearance in the CT scan. I think the largest dimension of my tumor is 3.7cm. (Kind of went through a transition of calling it a cyst, then a mass, then a tumor. It is located in the center of the kidney, so a partial is possible, but pretty problematic. I am much more comfortable with removing the whole thing, rather than risk bleeding/leaking complications, and the possibility of missing some of the cancer.

As I tell friends, co-workers, etc., that I am having this done, it seem like everyone has a family member or friend who has been through this. I can't believe it is this widespread, and I didn't know till now.

I count myself very fortunate to have found it at this stage. I (and my doctor) could have easily shrugged off the back pain until it spread. And, if you've looked into this, you know that you don't want to let RCC spread. Totally different ballgame, then.

Best wishes on a smooth, successful surgery, and a speedy recovery!

hi all

it seems many, many people have found out about their kidney cancer through scans for unrelated problems. I also found out about mine by chance - and I got a phone call on my 39th birthday, at work, to tell me I needed to see an urologist urgently.

I had a 5cm renal cell carcinoma on my right kidney. It was removed laparascopically on 27 August. The surgeon and anaesthetist were uncertain about doing the surgery locally (I live in regional Queensland, Australia) as I am obese with a BMI of 45 and this brings additional risks. They also thought it was 90% likely that I would have to have full open surgery. Finally after more testing and discussion they decided they would do the surgery (thank God) and now it's all over with.

All I can say is, I can't IMAGINE the pain of an open surgery, cause the pain of this is certainly enough! I spent 5 days in hospital, had an epidural in for 2 and a half days and had a few shots of IM morphine along the way too. The last two days in hospital I had panadol, tramadol 100mg and oxycontin morning and night. Leaving hospital all I have is a week's worth of tramadol and panadol, and the pain is still pretty intense.

I also have numbness of the belly, and a harsh burning feeling in that area when I stand up - I'm sure this must be nerve damage from the surgery? That is what I have read anyway. I want to buy one of those maternity belly slings or something, to help support my stomach, cause at the moment I can hardly walk because of that and find myself slumping over to avoid the pain.

The tramadol is also interfering with my sleep - I can't seem to sleep longer than 1 hr at a time, even at night. So I'm dozing on and off all day. I think it's also making me constipated, and due to the pain in my belly and wounds, it hurts to 'push' on the toilet as well.

I find myself in tears a lot - I really haven't had time to process all of this - the 'c' word was scary enough in itself, but it all happened so quickly... seemed I just got hit with the diagnosis and then wham, in surgery. I have two teenage kids - telling them was just awful - and my daughter, who also suffers anxiety, is taking this really badly and I'm not sure how to help her. My husband also lost both his parents to different cancers and this is taking a huge emotional toll on him. I feel like our family is falling apart and I don't know where to turn...

Hang in there jo_luka. Hopefully every day will get a little better. Non-metasticized RCC is one of the better "C" scenarios you can have.

I had my left kidney removed Monday 8/30. Hand-assisted laproscopic. Came home Wednesday. Haven't got the pathology report results yet, but I've adjusted to the idea that it is cancer, and it is GONE. And as I've started telling people about my situation, nearly everyone has a friend or relative that has been through this exact thing. A silent epedemic. Glad you found it before it became larger.

My first surgery ever. Certainly painful to get up and down, or even talk loudly. But every day is a little better, fewer pain meds every day (though if you hurt, don't be a hero; you need quality pain-free rest. If I start to over-do it, and the pain flares up, I retreat to a percocet power nap.

My digestive system is not quite working right yet, either. But the fasting, anesthesia, and narcotic pain meds all will do that. "Pushing" is not a good option for me, either. When the pain flares up, I can't even raise my voice.

It's going to take some time. Best wishes on your recovery!

I had my partial nephrectomy of the right kidney on August 20 and they found that the mass was a type of tumor that is benign!!!!I think that happy news has made the "after" seem much more tollerable. They had to do it the open incision way (10.5 inch scar!)but did not have to remove the rib like they thought. I had a epidural during the surgery that lasted most of the first day and they hydrocodone. The pain was pretty bad initially. By day 4 I was allowed to go home. I used pain medication, but gradually reduced it till now I just use Aleve and tylenol. I had some withdrawal symptoms from the pain medication--intense anxiety, GI disturbance, headache. I know we have to use it, but I would sure recommend that you watch it closely and get off as soon as you can. I really felt better after 2 weeks. As a matter of fact, I am returning to the University this week to resume classes and drove today to the grocery store. I am also walking everyday and am uup to 1/4 mile, but going a little farther each day.

Thanks to everyone for all their encouragement and prayers. I just praise God!

Hi Connie H40!
I don't know if you're still on the forum, but was wondering what your tumour actually was? My story is very similar- a 5cm Bosniak 3 cyst, 4hrs of surgery, an open partial nephrectomy with a 14" scar- and my tumour was a benign Metanephric Adenoma. This tumour is rare, and was only identified in 1995. It is impossible to differentiate it from RCC except Immunohistochemically (microscopic pathology etc). I've read that it is the benign adult form of Wilm's tumour, and like Wilm's it results from embryonic kidney tissue that failed to develop into normal kidney in utero. It can (rarely) metastasise, so I'm on 6monthly scans for the next 3-5yrs.
My Urologist told me virtually nothing about this condition- all he cares about is that it was benign. I like to know everything about what's going on in my body, so am searching for as many answers as I can. I am so thankful that I am cancer-free, but open surgery is very painful & I'm still recovering after 7 weeks post-op. Hopefully one day these tumours will be diagnosed more precisely, and fewer nephrectomies will need to be performed. Mine was causing identical symptoms to malignant tumours (except for metastasis) so it had to come out, worse luck!
I hope you're recovering well, and keeping up with your walking!
Von

Hello all,

My Surgery on 08/30/2010 to remove my right Kidney didn't go so well. I am OK now but had a hard time during the operation. My blood pressure bottomed out and my heart rate when way up. I also started vomiting during the surgery. Was in suregery for over 4 hours and recovery room over 4 hours also. I couldn't eat or hold any food down for 4 days. Finally on the 5th day with shots for nausea was able to keep Beef broth down, milk and jello. My blood counts were off too they had to give me 4 units of blood. It has been 2 weeks now and I am back to walking did 2 miles on Wednesday but that was a bit much and I payed for it that night so only walking 1/2 mile or so. Surgery his healing very well can't hardly see were I was cut in my belly button or the other 3 cuts about 1 inch. The pathalogy test confirmed it was Renal Cell Carcinoma or (kidny Cancer) They did all kinds of test too afterwards moree scans and ultrasounds. My Doctor is telling my I am clean no Cancer anywhere and I should be able to live a normal life from here on out. I still give the honor and glory to my God Jesus Christ for allowing my appendix to go bad so that they could find this much worse thing that in a year or two would have been termal Cancer. I wish all that have cancer to turn their lives over the Christ and pray for your healings. He is the answer to all our problems. Wish the best ....God bless. Feeling almost normal now.

To Crissold, garym, RichGtr ConnieH40, Jo_luka, Johnnyb and all of the others who are now new survivors:

Welcome to the Club. I hope each of you is able to welcome all the new survivors 8 years from now as I am doing today. As each of you recall in my earier posts, there is no way to sugar coat the Surgery, but things do get better. I went waterskiing 11 months after my surgery. It was just before my 60th birthday. Any challangers?

Icemantoo

Greetings everyone I'm glad to report I'm back at work I stayed out the whole eight weeks as instructed and glad I did. Icemantoo many blessings to you and your family everyone was such an encouragement to me. I go for my second check up on Nov, 8. I feel good and gained quite a bit of weight. lol But grateful to be able to be here to share my story. So to all the members in the group be blessed take the time you need to heal, luv you guys peace. P.S the stamp is not going up next year congress said no. lol

I see there are some new recruits on the board since my last visit, I'm sorry that you are here but welcome aboard. If you are a recent addition to the crew, the worst is behind you for now. I am 11 months post op today and the pain, trauma, and mental anguish are all but forgotten, its nice that our brains work that way. Scars and routine CT's will remain constant reminders but we can all LIVE with that. I had 7 close friends all die from RCC before I was diagnosed following an accident, I carry their shields to battle every day now. I just returned from a 4,900 mile motorcycle trip and have plans to bike Hawaii next May and hike the Grand Canyon rim to rim next summer at age 60. If you don't have a bucket list, make one, a long one, its a mind freeing experience. Live, love, and pray my fellow warriors.

Gary

Amurillo63 and mea01,

Welcome to the club of all those who have had "the surgery". Things do get better and for those of us where they "got it all" we can look forward to a long and healthy life and those wonderful contrast drinks for each yearly CT scan. We can also show off our scars. which are like a fish story. They get bigger every year.

Icemantoo: surgery 8/01/2002

Blimey, I hope not- mine's nearly 16" NOW!!! My husband encourages me to tell people I was almost bitten in two by a Tiger shark- lovely guy, so diplomatic...
I can't believe the difference a few weeks makes to the recovery process. Not true to say I'm pain-free but I'm starting to sleep on my left(incision) side, and & holding a stall at our local markets this weekend, something I couldn't even envision last month- plus am now a partner in a local theatre company (& performing as well as directing). No water-skiing for me, Icemantoo, but life sure does go on. Just need more coffee on those busy days, and a darn good nap when it's needed!
I hope everyone here is finding strength & peace as the days roll toward Christmas, and that we each can rejoice, esp now that our surgeries are part of the past.
Von xx

September 28, 2007 is a date I'll remember forever. That's the day I had a radical nephrectomy of my right kidney. But, I also had cancer going up my vena cava and it was floating in and out of my heart. The surgeon at Hopkins told my husband and me that I probably wouldn't make it off the operating table. I have a scar from between my breasts to around and below my navel. Not only did they remove my kidney but also had to cut my vena cava in half to get the cancer that was in it. They had a cardiac team in the operating room because they thought they might have to crack my chest open also. I was 60 years old at the time of the surgery and, in my opinion, came through with flying colors. I had the surgery on Friday and was released from the hospital on Tuesday morning. Yes, it was painful for about a week or two. What else can you expect when you have an incision that huge. I have had routine CT scans and bloodwork every six months since my surgery. They will do this for 5 years and then once a year if I want. Do I worry that the cancer will come back in some other location. You bet I do. But, it doesn't rule my life. I retired last year and am doing a little traveling. I've had two grandchildren since my surgery and am really enjoying them (one is just one week old). So, my advice is to live life to the fullest. We can't change what the future has in store for us. And, I thank God every day!

Thank you for the welcome Iceman, I am very grateful for the input from fellow cancer survivors. NO ONE can RELATE like someone that has been through it.

I am a 45yr old female. This is a very scary time for me..I've been diagnosed with precancerous tumors and polyps in the past and have beaten the odds each time. Surgery never bothered me. For some reason, this time, I am scared out of my mind.

One of the reasons may be that my Bosniak 3 mass has pretty much eaten my right kidney, it's 17cm, and causing me a lot of pain & uncomfortableness daily, since it's pushing with pressure on internal organs. My urologists believe that it may be cancerous but are waiting until surgery for final diagnosis - Jan. 26th, 2011. (The only time when all the surgeons could get together! I have other complications from a past surgery that will also be repaired at the same time.)

Due to its size, an open nephrectomy is only option but I have heard of many complications - from flank bulge to nerve damage. What is the reality of that and any helpful suggestions to combat pre-operative jitters and post-operative complications?

I have some time to prepare but it's looming over me as each day passes and I'm a nervous wreck. I'd appreciate any help you "veterans" can give. Thanks in advance.

I do not blame you for being scared.I sure was at the time. I waited over 8 weeks from diagnosis to my surgery back on 8.1.02. The waiting is not fun. As the Bosniak classification goes your mass is either Cancer or will become Cancer over a period of time. Surgery cures Kidney Cancer if the Kidney is removed before it becomes Cancer and spreads. I wish I could sugar coat the surgery, but I can not. All surgeries carry a risk, and nepharectomys have been around for years and most people do not have complications from this surgery. The complications arise if you do not have the surgery before the mass becomes cancerous and spreads. In my case I had a pretty obvious tumor and it was Cancer on the pathology after the surgery. Yours may or may not be cancerous, but it still must come out. This surgery far outweighs the alternative.

Thanks for the responses. You're right..now is the time to get this done and stop wasting time!

Well, it's getting down to the wire. Surgery is on the 26th of Jan and the docs have taken me off work to get my strength up for the surgery..so I don't overwork myself before the surgery.

Trying to keep a positive attitude. But all of your responses and support have been very helpful. I'm at least mentally "somewhat" prepared. All you survivors have been an inspiration to me. From all your experience I take from it that recovery starts with the first breath after surgery, the first time your feet hit the floor for your first stroll. I have made a vow to myself to make me a priority. I have always been a workaholic..which is why I waited so long to get this done..but now it's time for me. No backing down from this! Thanks for the words of encouragement and I'll keep you posted on how things go.

I do not blame you for being scared.I sure was at the time. I waited over 8 weeks from diagnosis to my surgery back on 8.1.02. The waiting is not fun. As the Bosniak classification goes your mass is either Cancer or will become Cancer over a period of time. Surgery cures Kidney Cancer if the Kidney is removed before it becomes Cancer and spreads. I wish I could sugar coat the surgery, but I can not. All surgeries carry a risk, and nepharectomys have been around for years and most people do not have complications from this surgery. The complications arise if you do not have the surgery before the mass becomes cancerous and spreads. In my case I had a pretty obvious tumor and it was Cancer on the pathology after the surgery. Yours may or may not be cancerous, but it still must come out. This surgery far outweighs the alternative.

Mass size is 13cm not 17cm..oops..lol..

Hi Kjackrascal!
I can relate very well to how you must be feeling- I was diagnosed with a Bosniak3 tumour in late August this year, and underwent a partial open nephrectomy in September. All signs indicated that this was RCC but because the tumour was small (5cm) I was able to have a partial. I didn't receive my results 'til 6weeks later, but the tumour was benign- a rare Metanephric Adenoma which is related to Wilms' Tumour but is not malignant. There is always hope, so don't despair until you know!
The surgery was my biggest fear- like you, I'd had previous conditions & it was a bit complicated. I live in Australia where procedures might be a little different, but maybe my experience will give you an idea of what to expect:
Surgery took 4hrs. That's a long time to be in the awkward position they need to have you in to access the kidney, so backache is a possibility afterwards
With an Open incision, the cut is quite long (mine was over 14") so there's the possibility of nerves being cut & muscles seperated (so- numb areas & bulges are possible- more if you're overweight)
After surgery you may be connected to a lot of hardware! (I had a paravertebral block in place, a urinary catheter, a wound drain, two IV ports, self inflating pressure leg-thingies and a nasal oxygen pump). This was a lot more paraphenalia than with other surgeries!
I had daily shots of Heparin while in hospital, also blood taken daily & hourly obs for 2 days.
The incision was closed with staples, which were removed after 10days- this hurt a lot but is over quickly
I stayed in hospital for 5 days. On the day after surgery I sat up in a chair, and shuffled around as far as the equipment would allow. The next day I started walking around the ward etc, and this helped a lot with my recovery. Once you're seen to be mobile, a lot of the hardware can be removed, which is a big help psychologically! Also, getting yourself into that shower feels like bliss!
Now at 11weeks post-op I still have a lot of fatigue but am starting to sleep on my incision side. For the first 6weeks there was quite a lot of pain (aching near the incision, shooting pains etc) but every day gets better provided you don't rush things. I had a slight bulge above the incision, but it seems to be diminishing & is hardly noticeable now- try to avoid lifting & stretching to hang out washing etc!
I found that a cocktail of antioxidant fruits & veggies with Vit C & acai berries really helped with the healing process- also, drinking plenty of water is a must, and will help the remaining kidney(s) to work more easily.
I hope this helps- please feel free to talk about your fears etc if you'd like!
Von xx

Happy Holidays everyone, had a CT right before Christmas and got the all clear, best present Santa ever gave me, I'm officially a one year survivor. I've been drinking more water and following a lower protein diet, the Doc says my right kidney is happy and healthy so it seems to be working but I am worried about one thing...I can chug contrast without thinking about it (always amazes the techs) I hope its not addictive ha, ha.

Iceman, I'm going to water-ski this summer at 60 and tie your record, any thoughts about setting the bar a little higher? I've got the boat, the rope and the skis. You are an inspiration, keep up the good work.

Garym,

Just do what I did. Stay up for the full run without falling. Ride the wake back and forth. Use 1 hand most of the time. Drop a ski at the end. It helps having done all of these things when I was much younger, like between ages 13 and 16.

Icemantoo

Von55, thank you so much. I appreciate the honest reply. I have done a lot of research about the surgery and it matched to a lot of what you said. My surgery is Jan. 26th and I've tried to anticipate everything but I'm realizing I can't control every outcome..which is scary on its own. I can do all the research in the world but I still can't expect and prepare for or control the unexpected. Now is just time to relax and get my rest.

As for getting the "good" kidney ready, well, I have been doing that already since I was told that it has been doing the work of both kidneys for a while. The "bad" right kidney masses have eaten thru the kidney. My lifestyle, thank goodness, is good. Don't drink coffee, sodas much, or tea. Don't smoke and never have been overweight in my life except for the past 4 years when other illnesses gave me complications which limited my ability to exercise. But I always walked and tried to work out on my Wii when this kidney allowed.

But now I experience a lot of flank throbbing and sometimes sharp pain in my rib area and just all around discomfort and pressure which is making the surgery a welcome blessing!

But all your experiences make me a stronger person because I realize there is light at the end of the tunnel and I can & will survive this. Thanks again for your helpful words and I'll keep you posted on my status as things progress.

All the very best to you, Kjackrascal! I'll be thinking of you on January 26th and praying for your full recovery. The experience may change your life for the good in ways you never expected, and I hope that this is so!
Von xx

I recently found this support page after trying to convince myself I was ok and didn't need support. I'm 40 yo and recently had a laprascopic radical nephrectomy (December 7, 2010) of my left kidney. It turned out to be rcc thankfully enclosed in my kidney, stage 1. Recovery has been very rough.
In some ways I feel extremely blessed that they found the cancer. I was 3 months pregnant when I was diagnosed with galstones. Through that process they found the mass in my kidney. I had my galbladder removed while pregnant, my son was born on October 8th. I had the CT scan to check the tumor the day after I delivered him.

I'm so worried that I won't be able to take care of my baby. Thankfully my mom has been able to help me since surgery. I am just now getting back to lifting him at night on my own. I pray I will continue to get better. I can't wear my normal pants yet. I'm still running around in pj's and sweats. The incision pain and swelling is extremely uncomfortable. I also tire easily.

I am struggling with the question of should I tell my older boys the tumor was cancer? I have 3 older boys (21, 18, & 15). I told them about surgery for the tumor but not the results .
Any advice is greatly appreciated. I'm very scared of the year to come and the risk of returning. Even though I'm told it's less than 5%.

God bless.

LonT_13,

What a bummer,having RCC Surgery right after delivering a baby. I had the same surgery back on 8.1.02 and I am doing fine. It is only natural that you feel a little tired 1 month after surgery considering the galstones and pregnancy. It may take a little longer for you to feel stronger and I have no doubt that a month from now you are going to feel much better than today. As for the recurrance rate that is something that the odds are strongly in your favor and any recurrance can be delt with at a very early stage. As far as telling your boys it is you that has to be the proper state of mind. You had RCC, you had the surgery, it was caught early and you probably will not have any further treatments or limitations for the rest of your life. Welcome to the club.

Best regards, Icemantoo

Thank you.
I think I am going to take sometime to deal with my emotions and get stronger. Then sit down with my older boys at once and talk to them.

Dear Icemantoo,
I started following this thread after my 76yr old father was diagnosed and within days had a nephrectomy for stage 1 RCC (clear cell).
He is currently 17 days postop, and doing very well psychologically and physically. However, I have concerns about the function of the other kidney. His blood urea flucuates between 40 and 60mg% and the createnine between 1.4 and 1.9. Today they were 55 and 1.9.

I need reassuarance on
1. how soon the other kidney is up and running. My father is a hypertensive (20 odd years) and a very recently diagnosed diabetic (both conditions very well controlled), and
2. How often does renal function have to be monitored.
thanks, Upreet

Hi! You must be a very special lady to cope with all of this! I can't imagine the stress of a new baby on top of your diagnosis and surgeries. I can relate to the dilemma of whether or not to tell your older kids though- mine were 29,25, 24, 22, 12 & 9 when I had my surgery last Sept (open partial, left kidney). That's a lot of years being a Mum and taking responsibility for the welfare of your kids. For me it was really hard telling them I was ill- however old they are they still see us as invincable & strong & there for them. The possibility that we may NOT be there is an unbelievable shock & like any Mum I hated to put them through it.
It's really important though to not shield your kids from life but to help them find their own inner strength to deal with realities- this was very hard for me, but it proved to be a very positive thing for them. My being vulnerable has allowed them to to be strong & supportive in ways that may not have happened otherwise- plus, it's a trust thing. Showing the kids that you trust them enough to be honest with them demonstrates that you have faith in their characters, and that's an amazing gesture for their self-esteem!
The other thing is that you're going to need support for quite a while, esp around the house, and if the kids understand the reasons for this they may be more cooperative! I've been doing a lot more than I can actually deal with and I'm still exhausted, although my husband is wonderful & very helpful. If people want to help- let them! If you can manage to put yourself & your healing first for a while you'll be so much more able to cope with everyone's agendas later.
All the best to you, and please let us know how you're doing!
Von xx

I just wanted everyone on this site to know how much reading all of the posts has helped me to cope and understand what I am going through. I went to the urolgist in July, 2010, for overactive bladder issues, had microscopic blood in urine - CT showed tumor in right kidney - not related to bladder. As for most of us, the kidney cancer was found when looking for something else. We are the lucky ones!!! Diagnosed on July 20, 2010 and had open radical nephrectomy on Aug 30. I was 53, 20 lbs overweight, but had been walking 30 mins most days. The surgery was rough, but I was kept comfortable. Had a WONDERFUL surgeon and my husband and family (sister!!) took excellent care of me. Spent about 4 weeks at home recovering.

I am a LUCKY one to have had a small (3.5 cm) tumor totally contained in the kidney, stage 1, clear cell, class 2. No further treatment needed. My remaining kidney is doing well!! I try to be careful - watch out for salt, eat much more healthily!!!

I used a back brace (puchased at drug store - wide elastic band with velcro) when having to walk and it helped a lot.

I went back to work as a legal asst the first part of October. I am trying to walk again each morning and I have lost that 20 lbs. I still tire very easily and I am still sore with a "stretching" or "buring" feeling near the incision on my side and my back. It doesn't go away - does anyone else experience this? It is hard to bend, reach, and i still can't sleep on my right side and the rib is sore. Just wondering how long it takes now that I am at 4+ months.....

I am encouraged by everyone who is doing so well after their ordeals. It is so inspiring to see the support offered to those who are newly facing this and the to each other who have come through it.

I am so blessed to have the diagnosis that I did. It really refocuses your life, changes priorities. I pray for each of you - for your surgery, your recovery and for your long term survival!!!

I would love to hear from others as to their experiences and how they are doing!! God Bless!!

Cheryl

I'm new to kidney surgery, but not new to open abdominal surgery. My tumor is small 1.3 cm on my right kidney, but the surgery is going to be the big slice open since the tumor is sitting on the main vein leading into the kidney. Doc thinks that eliminates the laproscopic option, unfortunately. I'm a teacher, and since tumor is small, we can wait until summer to remove it. Projected surgery date: June 13.

I've had an appendectomy, a hysterectomy, a hernia repair -- all open abdominal surgery. The hysterectomy was the easiest because they don't slice through muscle. The others took the traditional 6-12 week recovery time since they do slice through muscle. So, if your open surgery takes months before you are moving around and pain free, don't be surprised. Your mileage may vary, and laproscopic is reportedly easier.

For my partial or whole nephrectomy (won't know until they get there), my urologist plans to go through my back. Has anyone else had that approach?

No, I didn't get that approach. They went in thru my abdomen. We have similar histories..I too have had a hysterectomy, and hernia repair. Instead of appendectomy, I had to have a gall bladder removal.

With this nephrectomy, I also had a hernia repaired with mesh..all abdominally with the robot. Mine too was dragging on main artery and the Da Vinci worked just fine. I had 2 baseball-sized cysts and several ping pong balls wrapped on the artery!

Abdominally, the robot is one of the best options out there. I originally was told that I was to have an open surgery but at the last minute my surgeon said the robot would be so much better for my overall recovery that it would be a shame not to try it. I'm glad they did. I'm 5 days post-op and doing remarkably well.

Hopefully, that will be an option for you. Wish you the best.

Hi All,

You have been so supportive and helped me so much with my pre-surgery anxiety that I had to let you know about what has happened since my total nephrectomy on Jan. 26th. I'll try to make it as brief as I can.:-)

Surgery done by Da Vinci robot and was able to do my nephrectomy laparascopically with the exception of a 4 inch scar where the surgeon had to squeeze out the cysts. Still waiting on pathology - staying hopeful. Even if it was cancer, my doctors say that it was contained.

As for the Bosniak 3 cysts, originally I was told it was 13cm but turned out to be more than TWICE that size with multiple cysts invading the kidney. Hardly any kidney left. Don't know what caused it but it was totally the reason for the abdominal pressure,pain, and high blood pressure I had on a constant basis.

In hospital, I had complications with high white blood cell count, partial lung deflation, as well as extremely low potassium levels. Since I'm asthmatic, a respiratory therapist came in to work with me to help me breath better which helped a lot. Now, 5 days after surgery, I can take deep breaths without too much pain. I was able to get well enough to go home two days after the surgery.

Walking has been the biggest trial but also my biggest help. I'm walking more everyday but still stiffly but getting better everyday. I'm now able to sit up without pillows but still sleeping most of the day to recoup my strength. I just can't stress how much better I feel now that that monster is out.

Pain is tolerable with Vicodin. It has gone reasonably well.

Thanks to all of you who shared your words of wisdom with this "newbie" and your healthful prayers. Take care and I'll keep you posted on that pathology report. And for those recently dealing with this and surgery is to follow - listen to your medical team after surgery and don't panic. You can get through it. Each day will be better than the last.

Thanks again.

Glad to hear you are doing so well!!! Try using a back support (brace) that you can purchase at the drugstore. I used a 12" with velcro fastener and found it to be a big help, especially with walking!!! I had a radical open nephrectomy August 30 and am now walking on the treadmill each day for 30 mins!! You will get there - take it slow.

The biggest problem that I have had is a constant burning or a feeling of stretching along the incision, more in my back. My family doc thought it might be nerve damage and has just started me on neurotin, which may be helping some. I have heard that there is sometimes nerve damage and when you consider how big the incision is, it sure seems possible!!

I hope your pathology comes back favorable, or like your docs said, it was contained. I was one of the lucky ones in that the removal of the kidney was also the cure.

My best wishes to you and to everyone who is recovering from or waiting for surgery! Hang in there, it does get better!!

Cheryl

I've never heard of the Da Vinci robot! That sounds great for people who are candidates for laproscopic!

That is what my Doctor used to remove my Kidney. Amazing what they can do. I was first told they were going to cut me the old fashion way. But Edwards Hospital got the Robot so they changed the surgery using hand assisted robotic ot something like that. I am feeling great and 99% back to normal. 'for all you new people just getting the bad news hang in there it is rough the first week or so after surgery but it gets better. Trust in God and he will be with you always.

Hello Kjackrascal,

Well, I had my Kidney removed in August of 2010. Recovery in the first few months was hard. It has been almost one year now. I am walking sometimes 2 to 3 miles a day. At Work lifting and mving things again. Just like none of this ever happened. I praise God for all the Support that I have gotten from all of you all there. Just hang in there trust in God. That is my advice to you and any others having any type of Cancer.

Hello all,

Just wanted to tell all I had my 6 month check up and everything looks great. My Doctor tells me I have heal very well. I am back to work and doing everything I did before. My eating habits have changed tho. eating healthier now. but still sneak in a Pizza every now and then. I go back in September to have a CT Scan. I feel great. It was rough in the beginning but to all of you who have just had a Kdiney remove the most important thing I can say to you is trust God for your healing. My scar well you really can't even see it. Wonderful Doctor did a great job. I thank God for my appendix flaring up other wise who knows what would have happened. Has others have said hang in there. It gets better.

thanks for the encouraging words!!
I'm happy to hear you and others are recovering so well.
I have a quick question that I'm wondering if you or someone else might be able to answer for me. I'm 8 weeks post op(left radical nephrectomy)and am still feeling weakness in my legs. I'm 58 yrs young and before surgery I was very active with hiking and jogging and always felt in pretty good shape. I guess my question to everyone is: Is weakness at this stage of recovery normal. Any feedback/support would be greatly appreciated.

Hi Johnny,
I too am scheduled for a partial neph. using the DaVinci on June 2nd. It was good to read your post because it seems not many have had the surgery done with Da Vinci..My mass is 3.4 cm., hopefully, I pray to God it is encapsulated and only a partial is needed, but after my pre-op visit this Thur. I was told again that they really don't know what they're up against intil they get in there...I am in such a state of panic these last few weeks, and already I just want it done and over with...Mine was found by "accident"..had some back and pelvic/abdominal pain that my doc just couldn't nail down a cause. Had a CT this Christmas Eve and last June, both showed a CYST on my kidney..After having an ultrasound done in April, they called me back that afternoon for a CT , that's when I got the news that it was a mass. The "cysts" were 3.4 cm, so it's been the same for almost a year. Sorry to go on, but I find it so difficult to talk to my family about all of this. I try to act positive in front of them and it's getting so hard to keep up this front..I am scared to death...all I feel I can do is pray to God for a successful surgery and good outcome...Praying seems to be the only thing keeping me sane right now...I am so happy for you, you seem to be doing quite well. I pray things continue to go well for you...

Welcome,

I'm 18 months post op (left side, 5.0 cm)I lost a little over 20 pounds but mine was a lap which is easier on you than an open procedure. Your husbands age physical condition and type of procedure would all impact his weight loss but it is to be expected. Typical treatment following a pathology report indicating that it has not spread is follow-up ct scans every six months for up to 5 years and yearly after that.

Hang in there, the worst is behind you.

Gary

It is very likely that he just isn't eating enough as you don't feel like eating when you hurt. Or at least I don't. I lost weight following my nephrectomy as I just didn't eat much.

You could try and get him to drink smoothies if he doesn't feel like eating. Can he afford to lose the weight?

Hi all, glad to hear you guys are all so positive. I was diagnosed in April by a student doctor after being told by my G.P. that I just had trapped wind. After a C.T. scan I was told I had a 7cm tumor on my right kidney. Had a radical laprascopic nephrectomy on 25th June and came home 27th June. Only prob I had whilst in hospital was a slight chest infection but thats clearing up well now.

Just want to know if its normal to have muscle cramps around the surgery site if I walk round for more than a few minutes and to not be able to lie down flat or on soft surfaces without severe discomfort and pulling sensation around the surgery site.

Also my stiches are starting to itch and I am trying really hard not to scratch them, has anyone got any good ideas on how to releive this. It is worst when I have just come out of the shower. How soon will it be before I can soak in the tub without fear of causing problems to the wounds?

Nige

Nige,

Your aches and pains sound normal. Just part of your initiation to our little club. As for specific questions ask your doctor. Things do get better,. Day by day.

Best wishes,

Icemantoo

Hello Nige,yes I can appreciate how you feel,I had the last of the staples taken out four days ago,I changed my own dressings every two days and I found patting with betadine lotion took the itch away.I still get discomfort and have to change positions but things are getting easier.I am three weeks post-op radical nephrectomy left kidney for large encapsulated cancer tumor
My problem is my stomach is very sensitive to certain foods and I still get pains before opening bowels and sometimes before urination,also have an inguinal hernia which doesnt help
Is this all just a settling down process post surgery?Any advice would be gratefully accepted.My body feels totally out of sync.
George

Johnnyb,

The chest xray is a routine test given before and after RCC surgery to rule out metastisis of the RCC which first shows up in the lungs. Do not worry about it.

Best wishes,

Icemantoo

Thanks Icemantoo, I am sure everything is going to be fine. Glad your still doing great after all these years.

T.

I see you have done your homework and read some of my postings. I am not sure I can help with most of your questions. As to 1 and 2 I have never been aware of difference in RCC between the 2 kidneys. As for 3 my understanding is that the primary group is males between 50 and 70, but that the females are only slightly behind us ( I think they want to be behind us in this). I have no idea as to 4 and 5. As to 6 alcohol other than moderate use causes its own problems. In answering number 7 I reflect on a young mother in our group who went on a roller coaster 3 months after the surgery. That is fine, except wait a year for that. You are going to be able to get back to normal activities in 6 weeks or so, but do not push the extreme stuff for a year and until your body tells you it is ready.

Additionally you and I are no spring chickens at 69 and 68 years old. Your surgery at 69 is going to be tougher than mine when I was a youthful 59. Take that in consideration .

Best wishes,

Icemantoo

Thanks for the swift response iceman. I'm not a heavy drinker but am easing back on my daily consumption - from two glasses of wine to one with my evening meal. Thanks also for the guidance on recovery time. No risk of my ever going anywhere near a roller coaster!! As you say, you and I aren't spring chickens but I'm in very good health - obvious excepted - and have a BMI of 23.1 which should help, though I'm a bit concerned at the amount of weight some people lose since I couldn't afford to shed twenty pounds. Is weight loss likely to be significant? I never feel the cold normally but might that change? I have been sneezing a lot in the last year or two and am a bit concerned that this (and coughing) could be a problem in early phase recovery - is this daft?

The Grapefruit Effect is real and was discovered by chance (in the US) some 20 years ago. This short item gives an excellent sketch:

http://www.eurekalert.org/pub_releases/2008-08/acs-nrt072308.php

I don't want to start a hare (or a scare) but it's a fact that may be of interest to some patients.

Hi T,

We are alike in many ways. I'm a bit younger at 60, 2 years post op left side, I share your passion for golf and weight lifting, but I walk instead of run as it is easier on the knees. I also share your views on recurrence, refusing to worry about that which I cannot control and believing that surveillance will provide early enough detection to go back on the attack. Because I have only one kidney I watch my protein and sodium intake and monitor by blood pressure, but life is pretty "normal ' other than that.

I have no insight or information on no. 1, but I'm sure that if there were anything significant someone would have studied it. As for no. 2, the surgery on the right is a bit more difficult than the left, mainly because of the proximity of the liver and the shortness of the renal artery. I think no. 3 is spot on and as for the over-representation of ladies here, I think women in general are more comfortable sharing than us guys. Never heard of the grapefruit effect or problems with St, John's Wort. I've been told by both of my docs that alcohol is fine in moderation which they described as 2 drinks per day max., I didn't drink before surgery as I was recovering from injuries due to a motorcycle accident that led to the discovery of my rcc. No. 7, all I can say is listen to your body and recognize your need for R&R, I started walking the day after surgery, but to my standards not theirs. Their idea of a "walk" was a short distance down the hall and back, I did 4 laps (about 1/2 mile), surrounded by nurses sure I would collapse, without a problem and the day before I went home I walked the halls for 4 miles pushing my I.V. cart all the way, but I regularly walk in excess of 100 miles per month so I was in tune with my limitations. I started lifting weights (lightly) 2 weeks after I got home and could have played golf at about 4 to 6 weeks except it was the dead of winter here so I had to wait for spring. Your age will play a part, but it sounds like you take pretty good care of yourself and I think because of that your recovery will be shorter than average.

It won't be long before this is all behind you and things will get back to "normal", good luck and God speed.

Keep us posted,

Gary

Gary,

Hi. Thanks for the good advice. I've admired the philosophic approach you've advocated on this and other threads lately - look for the positive in any situation. (An ante-natal advisor encouraged her class:- keep walking while pregnant and best on soft ground, e.g. grass and suggested that the husbands present should join their wives. A thoughtful husband asked if it would be ok for his wife to carry a golf bag while they walked.)

I've started monitoring my blood pressure which has been rather high recently. The relationship between kidney disease and BP seems to be very complex so I'll study my patterns as best I can. What have you found out about your own? You're plainly a thinker so you might find the link I sent (above) to iceman on the Grapefruit Effect interesting.

I'm greatly cheered by your info. on your recovery. I've got an ergometer, an elliptical trainer, a Concept2 D rowing machine, a Nautilus Smith machine and free weights at home, though I've not used them much lately. I'll try to remember that I'm rather older than you are but, that said, I'm encouraged by your experience of exercise in your recovery. Mustn't be too cavalier though and will heed the advice to listen to what my body tells me.

I've just got home after finishing with a tap-in 4 on the 18th at Carnoustie. I had planned on another couple of rounds pre-op but it was bitter on the links today and snow is not far away so I might just quit while I'm ahead (need to finish gutter repairs and dismantle a scaffold tower after painting our exterior woodwork anyway - both things that, like bringing in logs, I soon won't be able to do for a while!). So I guess I'll have to pull out of our Winter League for the next couple of months :-(

Thanks again to you and to iceman and I'll keep you posted - this forum is one of the very best resources I've discovered.

T.

T,

What would Jean VandeVelde have given for your score in 99??? You have many great and historic courses to choose from and I envy you. Here in Michigan there are many fine courses as well, but they lack the history which is such a big part of the game to me. I did get to play a few courses in Ireland several years ago and it was a trip I will never forget.

I'm not much of a grapefruit lover, at least not without a little vodka, but I'll check out the link.

I have family history of high blood pressure, heart disease, and diabetes. I was overweight and taking low dose medications for both BP and cholesterol when I finally made up my mind to do something about it. I started eating right and walking, I dropped 50 pounds and no longer needed either med. Prior to my nephrectomy my BP was averaging a healthy 118/76, since surgery it has been around 130/80 which my doc says is as expected for a person with only one kidney and not to worry, I monitor it weekly anyway.

I believe those of us that are accustomed to regular regular exercise have an easier time with recovery because we have a better feel for needing rest vs. when it is okay to push it a bit, I think you will find this to be true. You are wise to spend your pre-op time finishing up the things you will not feel like doing post-op, if you don't you'll wind up paying a price for trying to do them later. You have great spirit and attitude on your side, that is half the battle.

Best wishes,

Gary

Thanks Gary. Have just received admission details for Monday.

Well done for having taken control of your life-style and maintained it so well. The changes you made sure paid off and the results are an object lesson for others. I'm a little concerned about my own BP and will monitor it frequently for a while to try to get a dependable overall picture. I've maintained the same bodyweight, within a few pounds, for the past 50+ years and I'm a non-smoker. I shall, however, trim back my modest alcohol intake a little and reduce my excessive consumption of espresso. The latter change may well make quite a difference to my BP and I'll talk to my Doc. about it also.

I'm not golfing again for now. Your comments are on the money. A course I play a bit is Montrose links which is the 5th oldest course in the world. I hope all goes on well for our golfing friend foxhd - another of the great people one comes across on these inspiring forums.
I have no doubt that the outlook for contributors to these threads is a lot better than it would have been if they hadn't discovered this invaluable resource.

Kind regards,

T.

T,

I'll be away from my computer for the weekend but I wanted to wish you well for Monday. You sound to be in great shape both mentally and physically so I expect to hear that you have played holes that were tougher than this when you return. When the weather allows and you get back on the links this this experience should be good for a couple extra strokes from your mates, but don't expect their generosity to last very long.

Aces to you,

Gary

Thanks for the good wishes Gary. It's reassuring to know Statesside golfers are like UK golfers - I give it about three rounds before someone says 'My sprained wrist trumps the fact that you used to have cancer'.

I hope to be able to confirm later next week that optimism on these forums has been vindicated yet again.

All the best,

T.

Texas-Wedge, I was golfing in a month and a half. I have speeded up our group because every time play slows down as someone looks for a lost ball, I tell them that my life is too short to waste time looking for it. What can they say? Friend says, "Playing the cancer card,huh?" We laugh and play on.

What an old fox! Thanks for the tip - I hadn't thought of milking it that way(and anything to combat slow play!!). It just goes to show you should always be ready to learn from fellow golfers.
A month and a half from now will probably see us under snow here but if not I hope I've recovered as well as you and Garym and can be contemplating a careful return to the game.
T.

One of my best golf buddies said "Damn, now I'll have to cross you off my list of potential donors if I ever need a kidney", what a guy!!

Got home this evening and now a legitimate member of the Club - fully qualified!

now just a gimme. Welcome home!

Try for a Mulligan.

Icemantoo

T,

"Normal" is just a nine iron away. Lay low for a couple weeks, you'll be your ol'self before you know it.

Good to hear from you,

Gary

To the 2 Gar(r)y s from Michigan: thank you for your messages which are much appreciated.

Have just been on the 'phone with my regular golfing partner who knocked a ball round by himself at Carnoustie today. Weather was perfect but fairly soon I won't be missing it too much since we've had a bit of snow nearby lately and more is on its way. I guess most of Michigan can get fairly cold and at a latitude of 57 here we also experience cold weather, especially when the wind blows and in the Cairngorms just north of us there were winds of over 165 m.p.h. a couple of days ago.

I went in before dawn Monday a week ago and was in for 6 nights. I was first on the theatre list for the day. My Wife and Daughter took me in for 7:30 a.m. for a laparoscopic that was expected to take around 2 hours. So, after waiting for a long while with no feedback, my Wife eventually asked around 3 p.m. for news of how the op. had gone and was told I was still in theatre which, as you can imagine, was pretty anxiety-provoking for them (I wasn't much bothered myself, still being happily unconscious at the time!)

Being the right kidney it was a bit trickier due to proximity of liver etc. Added to this, there was some degree of small bowel adhesion and I have a long narrow torso, making it more awkward. The consequence was that they had to switch to open surgery and go in higher than expected in order to safely get the whole tumour and kidney out intact. This involved an incision about 11" wide with a lot off cutting of muscle - internal and external obliques, rectus and intercostals. They hadn't anticipated much likelihood of a transfusion so I was glad I had repeatedly mentioned my being a universal donor. As I understand it (I guess I'll get a full account of all the gore details later) I got more than a litre of blood and a couple of FFPs. Later on I intend to research the implications of such transfusions but if anyone here can enlighten me I'll be grateful for the info.

For a few days I had difficulty getting anything much beyond clear soup down. However, whereas I had been anxious about the possibility of losing good weight, to my amazement I find myself 10 pounds heavier now. I have oedema manifesting in puffy feet and ankles (which are normally conspicuously bony and vascular) so I'm guessing that the surplus weight is due to water retention that will dissipate naturally before too long. I hope so.

I was grateful for iceman's frequent repetition of the fact that the first couple of days are likely to be rough. In my case it was more like 3 or 4 days. I'm not accustomed to thinking of myself as a wimp so it came hard to find myself asking for extra pain relief. I'm on max. dosage of slow-release morphine which I hope can be tapered off quickly now, since I'm more comfortable at home. I am also needing, for the first time in my life, to take a laxative to combat the constipating effect of the morphine. So, that's two meds that I won't be needing in the near future.

The big wound was looking angry and after due deliberation it was decided I should have a course of antibiotics in case it was an infection. However, it's continued to heal up a treat and the surmise now is that the appearance was due to the considerable bruising consequent upon the massive insult to the musculature, rather than to any infection. It was a conservative decision that made sense and I'm happy to complete the antibiotics course. The pain control of choice is paracetamol which I presume I'll be on for a while yet. It seems aspirin and ibuprofen are no nos.

I was on oxygen for a day or two post-op. and I guess this is usual after major surgery and anaesthesia. I don't yet know how long I spent in the High Dependency Unit but my oxygen level was returned to normal and I was able to lose the oxygen line after I started getting reasonably mobile. The lead anaesthetist said I was in very good condition for a near 70-year old, or, in fact, for someone of any age, and this would be helpful for recovery. The toughest thing for me was dread of coughing because of the considerable pain it would entail while knowing that I needed to breathe deeply to combat congestion on my lungs. I managed to get walking well and walked a mile or two around the various bays of my ward in our colossal teaching hospital, in the hours before my Wife showed up to take me home. At home today I've moved around the house constantly but it's not the same as walking in the hospital. Unfortunately all I can do here is walk around my garden or on the golf courses where we live which means being on wet or frosty grass and hilly terrain - a bit too dangerous to be an attractive proposition. Might be able to get a friend to drive me to a park where I could walk on safe hard surfaces for a bit.

I checked my BP this morning and it read 110/78 with which I was delighted and pulse was 70. My body temperature has been stable and all in all I'm feeling fine. During the day my BP has varied quite a lot with the systolic sometimes on the high side. This seems to be inversely related to my pulse rate which drops to around 60 when my systolic is up around 150-160. Can anyone throw any light on the patterns of relationship between BP (esp. systolic) and pulse rate? Well, I've just realised I've been up for more than 17 hours which is probably more than is sensible so I'll say goodnight.

T.

T,

That is quite a story, its a good thing you were is such good physical condition going into it or the recovery would be much worse. Don't fret too much about all the nuisance things like meds and body condition, for now just do whatever is necessary, get plenty of rest, hydrate, and let nature take its course. We have some snow on the ground here, but it is supposed to rain tomorrow, its probably a good thing that snow is moving in over there, you will need a little extra healing time before swinging the sticks, you should be able to work on your short game pretty soon though.

Hang in there,

Gary

Gary, thanks for your continuing good advice. I agree that prior condition seems to have a marked effect on recovery. Yesterday i took a stroll of a mile or so with my Wife around the golf course we live on. It's around -2C. but recent gales have blown out and so it's crisp but pleasant here - we've dodged the snow so far. I'm keeping hydrated but don't seem to be tired, other than finding myself getting a bit sleepy at times while reading. I'm sleeping pretty well for 6 or so hours (broken by the inevitable dash in the middle of the night) and most of the other 17 or 18 hours I'm spending writing at my Mac and doing research on the Web. On other threads I see advice that the second week of recovery is when one can get tempted to push oneself too hard so I'm going to be careful.

I'm not thinking about any short game work yet but plan to try some very slow, gentle mirror drills in a while.

Right now I'm bothered by a solid rash which started in my groin and has steadily spread up to my neck and is now extending down to approach the back of my knees. I'm still on sizeable doses of morphine with consequent constipation. I speculated that the rash might be due to the laxative I was put on in the hospital and my GP has changed that but the rash continues. After one dose of the new laxative I think I won't need any more of that sort of medication and my doctor's judgment is that the rash is most likely due not to the laxative but to the morphine.

The itching is not too troublesome and I don't fancy giving up the morphine in a rush! I'm hoping that the allergic reaction doesn't develop into worse symptoms.

I'd be grateful if you or anyone else who happens to read this could tell me if they've had this problem and if so what seemed the best way of tackling it.

T,

It seems like they should be able to give you something for the rash, perhaps benedryl, you shouldn't be left to suffer needlessly, ask the doc.

Other than constipation I had no physical issues with morphine, but I hated what it did to my brain. My first experience was in the icu after my accident where the push of a button administered morphine for pain. While it controlled the pain nicely, it also turned me into a blithering fool unable to answer even simple questions intelligently, although I thought I was pretty smart (my wife straightened me out on that). I expressed my desire to stop using morphine asap to the nurses, it made their job more difficult because they had to delivery pills every four hours, but they obliged.

When I checked in for my kidney removal, a different hospital, I told them I preferred not to use morphine and they agreed to disconnect it as soon as I was able to tolerate oral pain meds without any issues, I never had the nausea that many of our club members suffered with and was off the morphine quickly. I then had another surgery five days later to repair some of the injuries from my accident and they used an epidural (spinal block) which numbed my left chest completely for that, much better. I continued to take oral meds for only a short time once I got home.

Not sure if this helps,

Gary

Oh boy Gary, have you been through it!

Whatever my rash is due to, it has stopped getting worse and the allergic reaction doesn't seem to be throwing up any other nasties. I had PCA (I gather this is patient controlled analgesia) early on - must ask Wife and Daughter if I was raving like you. Rash aside, I've been lucky in tolerating the morphine.

Maybe it is affecting my thinking though - I just went out for a stroll in the twilight but turned back after a few hundred yards realising I was walking on black ice and not wanting to risk a fall in the dark with no-one around. As I got close to our gate I saw a branch from one of our trees had fallen in the lane outside. Ordinarily I throw such branches back, over our seven foot high stone wall, back into our garden. I took two steps in that direction before I said to myself 'What on earth are you thinking about?!!' I don't think I'm off my head. I just think I'm feeling so damned good that I'm at risk of forgetting my condition. Maybe I should stick a post-it note on myself or hang a notice round my neck, saying 'Do walk; don't lift!'.

Your info. on epidurals is interesting - they seem to be gaining more and more favour. Can you remember the drug they gave you in your epidural? On the topic of drugs, I hope foxhd does well on the MDX 1106 trial he's on - he sounds like a great guy.

Thanks again,

T.

Thanks foxhd and I 'm hoping you're right in saying it's now just a gimme.

I've an amusing story to tell on the golfing front but it will keep for another post, later, because I've been surfing and reading for the last six or seven hours and am getting a little sleepy. I guess I'll go and lie down for a bit before I have lunch. These forums are so helpful - I remember many contributors saying they slept/snoozed a lot in the early stages of recovery. I found myself feeling sleepy a couple of hours ago and was a bit worried (because I had a great night's sleep last night, on my first night at home). Then I remembered that sleepiness is to be expected so it's nothing to get concerned about. So, bye bye for now. T.

This bit of the forum seems to be where Lone Kidney Club survivors narrate their recoveries and compare notes. This often helps new members even though we're all different. Over the years I've been told more than once that I'm 'not normal' but there might be another oddball who can learn something useful from what I've experienced.

I somehow managed to get my above post of Dec. 12th out of synch. That was my first day home and I'm now into my 17th day from the op. and have been home for 10 and a bit days. So, here's an update from my postings on 16th Dec.

My patterns seem very different from the norm. I wonder whether this has anything to do with the pain control medication. I'm pretty fit but also 69 so a lengthy op. that had to be switched from lap. to open, with substantial transfusions and extensive muscle cutting, was likely to call for considerable pain control. I'm still on 60mg. of morphine daily and will have to taper this sensibly and not too fast. I was also on max. paracetamol daily but kicked that a while ago, wanting to ensure I preserve enough of the pain warning to alert me to any risk of overdoing things. I finished an antibiotic course and have only needed two doses of a laxative to get back to normal bowel function, despite the morphine. So, until I see my doc. on Wednesday, I'm just on the morphine, with an occasional single paracetamol capsule which seems to dampen the allergic reaction I've had (presumably to the morphine).

On that regimen, I've not needed any rest or any sleep beyond my usual. I felt whacked once and slept for an hour during the day but woke up disoriented and unsure that I'd gained much benefit. I'm having about 6 to 7 hours of broken sleep at night and for the rest of the time I'm up and about, walking and shopping (Wife does the lifting) but mostly at a computer. Normally I watch a lot of TV and play a lot of golf. For now, no golf and I'm watching almost no TV, except for the odd news report. I'm spending practically all my time reading on the Web, or books and doing a lot of writing.

With the pain relief I'm on, I have no problem getting in and out of bed and in and out of the bath easily. I've continued with our long-established practice of giving my Wife her breakfast in bed but she now shares the job of catering for other meals (whereas for the last 30 odd years I did all the cooking).

Before I left hospital I expressed concern about stairs because I was going to be alone for most of the first week home and our house is built into a slope with the result that every entrance involves steps/stairs. [Our main door is at what we call 'first floor' level (I just remembered that in the US you call it second floor) and is up some steps. The same goes for two other doors at that level and the fourth involves a long outside stair. At the lower, 'ground' floor level (in USA 'first' floor) we have a single door and also patio doors with no steps, but to reach the rooms we inhabit all the time we then climb a fairly steep inside stair.] Any way you cut it I might have a problem. So, it was decided to do a trial run. A nurse walked with me to stairs between the floors of our massive teaching hospital. To our great relief I was able to trot up and down the stairs comfortably without needing the hand rail so that dragon was slain and they decided i could go home.

We have a lovely antique brass bed which has proved a godsend. I've been able to sleep in it since the first night home, grabbing the top rail and lowering/raising myself and the vertical rails to drag myself horizontally to reach the top rail. I think trying to get as close to normal, without forcing it, has been therapeutic and I now have no bother. I can also sleep on my back or either side without undue discomfort.

My main problem has been the allergic (?) pruritis. A rash steadily progressed from my groin to my neck and down to my knees, then eventually to my face and ears and down to my feet. I experimented with treatments and it's now not so bad but I have numerous little lesions that I'll have to avoid getting infected - my skin began to flake off to the extent that my face looks like bad sunburn with showers of flakes coming off. However, if that's all the price I have to pay for the morphine relief I'm happy to take the deal!

My bodyweight has now stabilised. I'm eating well but have lost almost a stone since I got home 10 days or so ago. Abdominal bloating is away, swollen feet and ankles are back to their bony selves and I'm about 2 kilos down on the weight I've maintained for decades. This answers a question my Wife and Daughter (both of an academic cast of mind) were intrigued by - what would an 8cm tumour plus a kidney weigh? I have to assume I may have lost a little muscle mass, but probably not much, so maybe what was removed weighed around 3 or 4 pounds. This may be naive but I won't care about being thought eccentric if I ask the surgeon this on my first checkup which will be in about 4 weeks time, I think.

We're supposed to drink lots of water during recovery. I'm not sure I'm drinking enough but how can I be sure? Has anyone had experience of drinking too little and if so can you tell me what to watch out for and what goes wrong when you get dehydrated? With cold weather and not much exercise I don't feel like drinking water and so I just tend to forget to.

T.

Hi Tex,
In addition to drinking plenty of water during recovery, you should continue to do so from now on ... forever! It's bad for the kidney(s) to become dehyhdrated. Your creatinine level can rise just from being dehydrated. I know when I have become mildly dehydrated when I start feeling thirsty. If you go too long without drinking water you will probably notice other more serious symptoms such as increased heart rate or fatigue. I used to be a big cola drinker because I disliked water so much, so I got accustomed to carbonated drinks. I've been drinking seltzer water instead of regular water. But I've read that this might not be very good for me either. So I guess I need to give that up too! There have been a lot of lifestyle changes in the past 16 months and giving up soft drinks and now seltzer and cutting back on pizza are some of the more challenging ones for me.
regards,
Mike

Dehydration can be hard to detect until or unless it becomes severe. In addition to what Mike has said it can also affect your blood pressure (low) and ability to make rational decisions. Symptoms may include sticky (cotton) mouth, low or no urine output, dry eyes (lack of tears) and disorientation in some cases. It is absolutely amazing how much water you need to consume under extreme conditions to avoid dehydration.

My urologist told me the best thing I could do for my remaining kidney was drink plenty of water. His rule of thumb was drink at least 1/2 gallon (roughly 2 liters) of water daily in addition to any other liquids I consumed and not to wait until I was thirsty. Drinking smaller amounts like 8 ounces at a time throughout the day is better than larger amounts all at once and to always drink extra during exercise. I've always been a water drinker so it hasn't been much trouble for me, but I know it can be for some.

That's very valuable advice Gary. I often struggle to eat and have got out of the habit of drinking water. I like temperatures of about 10-15 C. and start to get anxious when we get to 20 C. I avoid the sun and so there's not much likelihood of my experiencing extreme conditions and getting severely dehydrated. However, I'd forgotten that even moderate dehydration impairs cognitive functioning. I remember having great difficulty sitting exams on sweltering high summer days so I'm grateful that you've reminded me. I definitely find that my golf performance is better when I sip water all the way round.

I won't be seeing my own urologist for another 3 weeks, at my first post-op. assessment, so meantime I'll remember your urologist's helpful advice.

Thanks Mike. I'm going to try to develop a routine for ensuring I get enough water. I used to guzzle huge amounts as a kid but that was before becoming a tea and rocket fuel addict! You've done yourself a real good turn kicking the cola habit but I'm sorry your style is being so cramped on soft drinks. I'm drinking more tea and fruit smoothies and managing to limit the coffee somewhat. I normally enjoy a couple of glasses of wine at dinner and haven't been able to touch alcohol for more than 3 weeks now - can't wait to get off the morphine. When I do I'm planning to resume the red wine, but only one glass a day.

Consider everything from the living environment to the amount of daily activities, I'd get myself hydrated based on my urine output color and its amount.

If the color gets too yellowish, drink more water. And for a normal grownup person, the daily urine amount is in the range somewhere between 1000cc to 1400 cc.

Jon

First of all, thank you everyone for this wonderful board. It is so wonderful to read about everyone's experience and knowing that I am not alone. Here is my story/suggestions for anyone going through this:

I am a female, 31yrs old, and 3 weeks post surgery for stage 1 RCC. I had no side effects at all and like most, my cancer was discovered by accident. I do have family history of cancer (not kidney) so as soon as the doctor told me he suspected it was cancer, I agreed to the surgery without thinking it twice.

I had a hand assisted partial. I have 2 small scars (look almost like scratches by now) and a bigger vertical incission (about 4 inches) above my belly button. I was in the hospital for 4 days and have been resting at home since. At the hospital I was fine since I had a morphine drip, the only thing is that I became very nauseous to the medicine, so make sure they give you medicine for that. Also, Apparently I am allergic to the strips used to cover the incisions so I had huge blisters all around the incision, very nasty!

Once home, the first 3-5 days were horrible, not from the incision pain, but from the bloating and the cramps from the gas. This part hurt so badly that I was in tears. I recommend stool softeners, prunes, and lots of slow walking. At this point it hurts to do anything, so take it easy and try to sleep as much as you can. Get good pillows so it's easier to sit up at night.

After 3 weeks I now feel much much better. I sleep a lot because I feel like I am always tired. Also, if I walk a lot my lower back seems to hurt a lot, so I need to sit down often. My big incision is very itchy. I started using Mederma for the scar but stopped because it made the scar itchier. Lastly, I feel like my insides are being pulled apart, almost like my muscles are having a fight with each other. Very hard to explain- wondering if anyone else has experienced that.

Obviously I am scared that this will one day come back. My doctor said I was very lucky this was caught so early, but at the same time in 5 years I will be 36, so this is something I will have to get checked the rest of my life.

Good luck to anyone out there going through this! Luckily there are support groups such as this one that make it all a little bit better.

NewE2012,

Welcome to the Club. The surgery is not fun, but beats the alternatine. Sorry, but your complaints come the membership. You should be fine.

Best wishes,

Icemantoo,

NewE2012,

Welcome to the Club. The surgery is not fun, but beats the alternatine. Sorry, but your complaints come the membership. You should be fine.

Best wishes,

Icemantoo,

Jon, thanks for your additions to this discussion and I think it's good general advice.

I've also researched the subject a bit more online and found some items from the Mayo clinic site that are interesting. For instance, we get 20% of the fluid we need from our food. I read that it's common advice in The States to drink 8 x 8ounce glasses of water a day. It seems that most of us need more than that amount of fluid intake but that the recommended amounts should include all the tea, coffee, cola etc. that we consume. Coffee and cola used to be thought to be diuretic and therefore not helpful. Recent research, however, shows that to be false, at least until until you reach large amounts. That begs the obvious question how much is too much? After what I've read I've managed to reduce my coffee intake down to 'very heavy'.

I remembered the tip that one of the most astonishingly effective ways to lose weight/reduce calories is simply to use smaller plates. Apparently, for most people that works better than nearly all other weight-loss manoeuvres. I've adopted the same approach with my coffee - just making half a mugful each time instead of a whole one. I rarely need more and often I find it's cooler than I like before I've drunk more than half a mug anyway. So, with the same number of mugs I'm halving my daily intake and it's pretty painless this way.

T,

Never had your problem with coffee, I love the smell, but can't stand the taste. My wife is a coffee drinker and she used to say I'd learn to like it when I grew up, but she has given up on me on both fronts now.

I do share your fondness for wine however,

Gary

I live in Scotland. I discovered and joined this site exactly a month ago after researching UK resources. The UK equivalent is less busy and vibrant than this site. I'd never heard of the American Cancer Society (it's good, isn't it?!). I got here by Googling "recuperation from radical nephrectomy" and promptly found the thread 'Recovering from radical nephrectomy'. Bingo, but that way I started in the middle and had not explored other parts of the ACS site.

I've now started delving into the site a bit more and been surprised to find how much of what we discuss has been well dealt with in other parts of the site. On the topics listed in my 'subject' line, there is superb treatment to be found. To get to this, click on the ACS logo at the top left of this page -> the Home page. Then go to "FIND SUPPORT AND TREATMENT' in the menu at the top of the page. From there, go to the "QUICK FINDER" menu (on the right, in purple) and select "Survivorship, During and After Treatment". The second item from the top is "STAYING ACTIVE' that will take you to "PHYSICAL ACTIVITY AND THE CANCER PATIENT" and "HOME CARE FOR THE CANCER PATIENT: EXERCISE" both of which are worth reading.

Maybe, as newbies come on to these threads, we should point them to those articles as starting points after which they can benefit from the sense of community and friendship here, having got off to a fast start by reading those articles. I'm guessing I'm not alone in having found those items only after being on the threads for a while.

T.

I've been on morphine since op. on 5th Dec. I'm now down to just 10mg of slow release and considering stopping today. I've been lucky with it so far. I tolerated it well and it gave me great pain relief (but didn't stop the first 2 or 3 days from being very rough). However, it didn't make me sleepy - full of energy all the time - and no side-effects other than a non-allergic rash that spread over my entire body and caused a lot of itching due to the histamine release that it often causes. (Incidentally, don't take anti-histamines with morphine. The best thing I found for the pruritus was moisturiser.)

Feeling fine on morphine is all very well but there can be a downside. A quick look on the Web reveals that a lot of people have a terrible time trying to get off it. It seems to be somewhat similar to nicotine addiction in having psychological sequelae that can last for donkey's years. I think I am one of those patients who gets euphoric on morphine. Since running it down I've had return of some aches and pains - in the fingers and thumbs arthritic pain from old sports injuries and a few lower-back muscle twinges. I can take Co-codamol for the pain so no problem. However, sometimes in the last couple of days I've felt a bit flat. I don't intend to allow this to make me stay on the morphine and I'd be glad of thoughts from anyone who's had any problems getting off it.

Naturally I'm hoping my good luck holds and I can just stop taking it today without becoming depressed but any advice would be appreciated.

I've been on morphine since op. on 5th Dec. I'm now down to just 10mg of slow release and considering stopping today. I've been lucky with it so far. I tolerated it well and it gave me great pain relief (but didn't stop the first 2 or 3 days from being very rough). However, it didn't make me sleepy - full of energy all the time - and no side-effects other than a non-allergic rash that spread over my entire body and caused a lot of itching due to the histamine release that it often causes. (Incidentally, don't take anti-histamines with morphine. The best thing I found for the pruritus was moisturiser.)

Feeling fine on morphine is all very well but there can be a downside. A quick look on the Web reveals that a lot of people have a terrible time trying to get off it. It seems to be somewhat similar to nicotine addiction in having psychological sequelae that can last for donkey's years. I think I am one of those patients who gets euphoric on morphine. Since running it down I've had return of some aches and pains - in the fingers and thumbs arthritic pain from old sports injuries and a few lower-back muscle twinges. I can take Co-codamol for the pain so no problem. However, sometimes in the last couple of days I've felt a bit flat. I don't intend to allow this to make me stay on the morphine and I'd be glad of thoughts from anyone who's had any problems getting off it.

Naturally I'm hoping my good luck holds and I can just stop taking it today without becoming depressed but any advice would be appreciated.

Off morphine now for a week. No post-op. pain and now taking no meds. After a month plus with no alcohol, great to be able to take a glass of red wine with a (modest-sized) fillet steak at dinner! Slight problem now sleeping - restlessness, probably due to morphine withdrawal - everything feels too heavy, too tight, too hot. Last night spent two sessions on computer during the small hours, just in pyjamas until I felt my bodily machinery had cooled to 'correct working temperature'.

Awaiting call from GP later because a little concerned about bodyweight - left hospital a month ago at 162 lbs and now 142 lbs. Appetite fine and eating ok. Read that kidney only weighs around 1/4 lb so even adding in weight of 8cm tumour only gets to about 1lb, at most, so cause of loss of body mass not obvious.

Glad to hear you are able to partake in a glass of wine, finally! I was not on morphine at any time so I don't have experience with it. I do know I mainly took painkillers (percocet) in order to sleep for a couple of hours. I was extremely restless after surgery and even developed restless leg syndrome which made it difficult to sleep. I actually struggled with sleep issues for months after surgery and I have no reasons why.

As far as weight loss, I am not sure what is normal. I lost twenty pounds after surgery, but I also caught a nasty stomach virus ten days after surgery that I wound up in ER because of and lost 13 pounds in three days. I had a good appetite but found I could only eat very small portions- so the weight came off. I gained it back down the road.
I hope all is well
Rae

Rae, many thanks - that's reassuring. No part of your experiences seems to have been exactly easy, making you one of the inspirations on these threads.

Am seeing my doc. in a few hours time to give blood samples for analysis so with luck we'll soon know if there's anything amiss. Generally I'm feeling pretty good so it's probably nothing.

T.

Rae, it must have been hard to have sustained problems sleeping. I'm now almost 6 weeks post-op. and 2 weeks off morphine. The last two nights I've slept well for the first time in the past six weeks. I had many of the side effects of morphine (but not badly) and have had many of the withdrawal effects. I figure the hydrophilic propensities of morphine and the histamine release problems it gave me caused much of my weight loss and i'm beginning to regain a pound or two. I'll see my GP on Tuesday and get bloodwork results and hope to get path report soon.

In the hope of finding helpful info. for my Wife's cousin (terminal liver cancer) I've been spending more time combing through the liver cancer threads but, as Jamie found in her brief sojourn there, it's a heart-breaking place to go. My Wife has asked me to stop going there because I find it so emotionally draining. It has, however, reinforced for me how comparatively lucky we are here.

I see some posters put their own recovery stories out in their personal blogs. I feel they're better here because newbies are unlikely to find and make their way to an individual's blog whereas on these threads they can get a conspectus of the experiences of many different people all within a particular topic. Any views on this anyone?