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Recovering from radical nephrectomy

wendyleigh
Posts: 9
Joined: Jun 2009

I had a radical nephrectomy on May 06, 2009. I had renal cell carcinoma on my right kidney. The tumor was 7cm. My body is still not back to normal and I feel like I should be doing a little better than I am. I still find it very difficult to wear pants. I also feel like a lot of people think well she had the surgery to take out the kidney and the cancer is gone so she is fine now and it is all over with. Problem is I don't feel that way. Everything happened so fast. I am worried it will come back somewhere else. Does anybody else feel this way?

1luckyman
Posts: 1
Joined: Jun 2009

i had the same done on april 7, yes everything was very fast. i did have the same thoughts about it coming back. my doctor was very encouraged that we got it early and it did not spread. he told me i had a 90% chance i would be cancer free 5 years from now. i was lucky i healed quickly but it could take a few more weeks for you to heal. you will be back in pants very soon.
live your life to the fullest, you just got several years added on

wendyleigh
Posts: 9
Joined: Jun 2009

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.

donna_lee's picture
donna_lee
Posts: 398
Joined: Feb 2009

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

wendyleigh
Posts: 9
Joined: Jun 2009

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!

MandyBear
Posts: 14
Joined: Jan 2011

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!

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judyfain
Posts: 7
Joined: Mar 2012

My doctor didn't give me a percentage rate. The accidently found the tumor in the ER when they were looking for something else, and my tumor was about 5 cm, encapsulated, and cancer only in the tumor and not the surrounding tissue or lymph nodes. He said I was free of cancer and they would just monitor me every 6 months. I just want to know what to eat and drink now to improve the health of the remaining kidney.

A_New_Journey
Posts: 9
Joined: Jun 2009

Hi wendyleigh -

I was first diagnosed with cancer in early March, and after getting a second and third opinion, I felt comfortable in my decision to have surgery as soon as I could get everything in order.

My Urologist and Surgeon first performed a cystocopy 2 weeks before the scheduled nephrectomy. The purpose of the cystocopy was to look closely at my bladder, right kidney as well as the right ureter. He suspected that cancer had invaded my right kidney along with the right ureter even though the CT Scan showed the tumor actually positioned on top of my right kidney. His suspicions were correct and this decision really helped him fully plan out the surgery well beforehand. I had my surgery on April 6. The two anesthesiologists for my surgery recommended an epidural, and I agreed, because a friend of mine has a cousin who worked at Memorial Sloan-Kettering Cancer Center in New York City and he said to ask for one as recovery right after a radical nephrectomy can be quite painful without it.

My surgeon started the operation by once again performing a cystocopy to make sure that things had not changed from the March 20th procedure. It also gave him another chance to closely look at my ureter to determine how close to the bladder he was going to snip off the ureter. He had hoped to not touch the bladder at all during the surgery. The cystoscopy took about an hour and then he started the procedure to remove my right kidney, ureter, and adrenal gland. The nephrectomey took another 3 hours or so. The surgeon I found was highly skilled in laparoscopic procedures and has completed hundreds of them. He has also had a number or articles in published in various medical journals on this procedure, so I felt very fortunate that he was my surgeon. An open nephrectomy is highly invasive (as you can well imagine), and recovery is longer than if done laparoscopically. I have three small scars where they inserted the small tools and a camera and one incision scar where he removed the tumor, kidney and ureter. The initial plan was for the this incision was to be about 3 inches long, but because the tumor was much larger than he thought (based on the CT Scan), he had to use a 6 inch incision in order to get everything out without harming the bladder.

My recovery in the hospital was better than I expected and I was released after 4 days. My recovery at home went very well too and I felt "back to normal" after only another week.

After surgery, the pathology report showed the size of the tumor was 9.0 x 6.5 x 6.o cm. My cancer was determined to be Stage IIIa. The pathologist's report also showed that my cancer was not fully confined to the kidney and ureter. While there were no other tumors seen, cancer cells were found to be high grade and transitional. This meant that there was a high likelihood of recurring cancer within 3 years unless adjuvant chemotherapy treatments were started shortly (within 6 weeks) after surgery.

I am now undergoing a treatment plan of 4 cycles of chemotherapy. After the final cycle of treatment in early August, I will go in for a PET Scan, and if no active cancer cells are seen, I will need to have a CT Scan and chest X-Ray every 6 months for a 3-year period. If after 3 years there are no cancer cells present, I will be checked every year.

I have heard the phrase "living with cancer" and I think this is what they mean. While I may not have ever have to deal with another tumor again, I still have the possibility of these cancer cells transitioning to some other part of my body for the rest of my life.

I hope this information helps you (and others who may read this) to make a comparison to your ordeal wendyleigh. One thing I have learned so far through this whole "cancer journey" is that every person's cancer is quite different. You need to become as "informed" as much as possible in order to ask the right questions of doctors. As you have already found out, renal cancer is extremely rare and accounts for about 3% of all cancers within the U.S. Therefore, there is very little published information out in the public domain.

I have found the Cancer Survivors Network and the American Cancer Society to be a very valuable resource to me for reliable and actionable information. The cancer center staff where I receive chemotherapy has also been a huge help to me in sorting out all the facts. The chemo nurses there are not only very compassionate, but have been on staff for over 25 years and have seen it all.

Good luck to you and all others in our unique "club".

wendyleigh
Posts: 9
Joined: Jun 2009

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

LisaJo
Posts: 13
Joined: Apr 2006

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

corey50
Posts: 73
Joined: Feb 2009

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

wendyleigh
Posts: 9
Joined: Jun 2009

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?

lily33
Posts: 27
Joined: Jun 2009

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

A_New_Journey
Posts: 9
Joined: Jun 2009

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

wendyleigh
Posts: 9
Joined: Jun 2009

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

LisaJo
Posts: 13
Joined: Apr 2006

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

benny61
Posts: 3
Joined: May 2011

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

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judyfain
Posts: 7
Joined: Mar 2012

Are you saying the hysterectomy is how they found your renal cancer? I have a complete hysterectomy in October 2011, abdominally. I got what I thought was a virus on Christmas, I was sick for a week and then on the 31st I woke up in severe pain. I went to the ER and while doing a ct scan they located a tumor on my right kidney. I was horrified but I am so happy that I was in the ER that day, as today, I am cancer free. The surgeon cut me front to back on my right side, and it has been hell trying to get over this. My nephrectomy was 26 days ago and the incision still leaks blood periodically, because it still hasn't healed. I find it difficult to make it through the day without pain medicine. Good luck in you recovery.

judyfain's picture
judyfain
Posts: 7
Joined: Mar 2012

I wish only the best for you as well. My cancer was found by accident very early, it was stage I. Although I was in a lot of pain when it was found, I am happy I was in the ER that day. I had diverticulitis and while doing test and ct scan to diagnose it, they found that tumor. Thank you God for letting them find it them, or else it would still be growing inside of me. Good luck to all of you survivors.........

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Hmtwncali
Posts: 6
Joined: Oct 2013

I have to get surgery because of the diverticulitis .. So they have to do open on the partial nephrectomy.. Hey was yours open and how long did it take to get back to work 4.1 cm here

plumeria
Posts: 2
Joined: Jun 2010

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

rockybatleboa
Posts: 1
Joined: Dec 2010

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.

RayG
Posts: 2
Joined: Aug 2009

The last 30 days are a blur. The tumor was found during an ultra-sound that was attempting to rule out sometime completely different. Surgery was performed last week and the malignancy was confirmed. I am very sore but able to move around slowly. I am emotionally shell-shocked as we have no history of cancer in the family. I feel extremely fortunate and humbled by the support we’ve received from relatives and friends.

jmtb
Posts: 2
Joined: Aug 2009

I had a radical nephrectomy of my right kidney 10 days ago, renal cell carcinoma. Also had my 2 ovaries and my tubes removed at the same time because of a cyst on my right ovary which, happily, turned out to be 100% benign. I think my recovery is going remarkably well but I'm not pushing myself. I am so glad that I found this board the day before my surgery and read about many of your experiences. When I was laying in that hospital bed, I remembered some of the comments and issues that people had faced and I didn't feel so alone. I will always be grateful for that. I go to see my urologist and my gynecologist next week for the first time. This has all been a whirlwind for me too. My only symptom was unexplained weight loss over 6 months. I went to my internist for a physical on July 20th and had a diagnosis of kidney cancer on July 24th after a pelvic and abdominal sonogram, followed by at CT scan. Surgery was August 14th.

tictic1
Posts: 5
Joined: Aug 2009

Yes, I feel the same way. I had my left kidney removed on May 11, 2009. I to still have trouble wearing my pants. My tumor was 9cm. My left side feels funny, it is very hard to explain. I have some people saying, I look to good to be having chemo.. What are you suppose to look like during chemo??? I have alot of side effect {I'm on Torisel once a week}. I just wish people could listen to me when I say I don't feel good or I'm tired.. My kids and husband are doing the best they can, will most of them anyway..

wendyleigh
Posts: 9
Joined: Jun 2009

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.

HSacklow
Posts: 3
Joined: Sep 2009

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.

DML0466
Posts: 1
Joined: Sep 2009

I had a radical nephrectomy of my right kindey on Aug 17th they had to go through my 10th & 11th rib and had to do it the old fashioned way resulting in a 10" inssion they also nicked my lung so I had a chest tube. I was wondering if you had the same procedure and how long it was before it felt like your ribs weren't collaping any more

wendyleigh
Posts: 9
Joined: Jun 2009

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.

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judyfain
Posts: 7
Joined: Mar 2012

oh, that's why my ribs hurt. The details of that type of surgery was not explained to me. I just couldn't figure out why they hurt so bad. And I had to remain on oxygen for several days as well. It's been 26 days and I am still having pain in my ribs and omg, the pain in the back muscles, and between my shoulder blades......How long does it take to feel good. I find it hard still to move around for very long, I get fatigued and hurt so bad I won't to cry. Did you have any discomfort in your remaining kidney afterwards. I have been using cranberry and trying to choke down water as I hate the stuff because of the ache at times.

diana j chicago
Posts: 8
Joined: Jun 2009

Hello Wendy:

I am now 2 months post op. I had my radical nephrectomy (right kidney as well) on 7/21. While I returned to work just Monday 9/21 I am not totally healed. healing will continue for many months for me. My Dr. indicated that my vody will continue to heal for 6 months plus.

My surgery was the "gold standard" way with a long 12 inch incision. One of my lungs were collapsed and a rib was resected. I also have collateral nerve damage to my left thigh from the pressure on being laid on my left side for the duration of the surgery. At first, I would have flare ups that felt like my skin was being peeled away from my thigh and that section of my leg was on fire. Now, there is only a slight burning sensation at times. The numbness still remains as well.

My mid-section is also still swollen inside and has that numb feeling as well. Often my midsection will feel "tight". I kind of relate this feeling to the feeling of a blood pressure cuff being squeezed too tightly around you; only with that odd numbness sensation as well.

I could not wear my normal slacks until only recently.

I can relate to some of what you are feeling as well regarding your hesitancy. After my surgery, it was like "Okay, we are done with you for now, Good-bye!". But I was like, "Hey?? wait a minute!?!?! I'm still leery, I'm still scared! I need more guidance on what not to do physically and when I can begin to do more!!... It was like a whirlwind... You have cancer! Good Bye, we are done with you!.

I have sometimes felt lost in that regard as well, or cheated or gipped by some extra kind of support.

I think we all worry it will come back. I know I think about it. And it might very well come back. Or maybe not.

So all we can do is hope, live life, find happiness, don't sweat the small stuff, and all that jazz.

I told my cancer to GET THE "F" OUTTA HERE!!!.. and I hope I sent it the message that I meant business.

If it does come back... that's out of my hands, and I cannot do anything until then, but I will start paying more serious attention to my "Bucket List".

i wish you the best in your continued healing. While so many of us have kidney cancer in common, our situations are unique. Try not to compare where you are with others, but do continue to address your concerns with your doctor.

My best to you,
Diana

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garym
Posts: 1651
Joined: Nov 2009

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

Anita J
Posts: 3
Joined: Sep 2009

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.

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garym
Posts: 1651
Joined: Nov 2009

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.

annamania
Posts: 1
Joined: Sep 2010

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!

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

HI - and so glad your cancer was discovered. As all of us who've had it know, it's a sneaky disease and one that all too often is found when looking for something else. I had a radical nephrectomy in June of 2001. My urologist told me that it could take up to a year before I felt 'normal' again. He explained that the body undergoes a major shock and has to adjust to living on one kidney and not to push it. He also did my followups for 4 1/2 years with ct scans of chest, abdomen and pelvis. I switched to an oncologist at that point because of a very early breast cancer, although my urologist still wanted to touch base with me yearly. Listen to your body - do what you can or want to - when the body says rest, listen.

Time2luv
Posts: 27
Joined: Dec 2009

Although it is a scary time right before a scan it is very important to get them, insist on it and find another Dr if they don't want to do it. They told me I was cancer free after right kidney removed due to 4cm clear cell carcinoma in 01/06. Said I didn't need followups as they got it. Just shy of 4 years from time I was first told I had cancer they have discovered a small spot on my left kidney. It has grown from .5 cm to 1cm in 6 months. They say to wait till March, see if it has grown then maybe remove it. Want to keep my kidney functioning as long as possible and it seems they don't have a lot of experience finding small spots like this. I've been told they don't think this is connected with the first cancer but a NEW cancer spot. Didn't spread. I've had no problems with health, no pains, recovery went well first time around. Enjoy your life and visit with your friends. Try not to let this overwhelm you. Come to terms with it and keep a positive attitude! We will survive as we are fighters!

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garym
Posts: 1651
Joined: Nov 2009

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!!!

dianabquilter4
Posts: 25
Joined: Jan 2009

wendy i too had the radical kidney surgiers.....i had renal cell carsamonia on my left side.this kind of cancer is a slow growing cancer dr told me i could go 10 yrs before surgry is i had too....as i was sick with another problem when it was found and i had to wait 6 mos....mine was on top on the kidney half in and half out but it was containd in its own sac that surrounds the whole kidney...thats why they considered it cured....but i had a long recover peroid as well i found i could wear loose fitting strech pants and sweats pants....its been 3 yrs out and sometimes if i wear jeans it will still hurt...

good luck in the future and don['t worry too much with kidney cancer its take out the kidney and your cured unless it has spread to other organs before surgry

icemantoo's picture
icemantoo
Posts: 1510
Joined: Jan 2010

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.

1530jesup
Posts: 3
Joined: Jan 2010

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

crescent mei
Posts: 2
Joined: Jun 2010

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.

AndrewTeoh
Posts: 1
Joined: May 2010

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!

icemantoo's picture
icemantoo
Posts: 1510
Joined: Jan 2010

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.

crescent mei
Posts: 2
Joined: Jun 2010

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.

ltingle
Posts: 3
Joined: May 2010

Hello everyone. I just signed up on the website because what you all are talking about is exactly whats keeping me up at nights. Alot of you haven't mentioned your ages but those of you that have are older than me and i value the opinion of my elders....no offense. I have gone through many tests since January of 2010 and two weeks after my 26th birthday i was told that i have a rare form of renal cell carcinoma. This rare form happens in young females and is only seen in 5% of people and lucky me i got it. Luckily it is isolated to my right kidney so on May 24, 2010 im having my right kidney removed which they say should get rid of the cancer. Im scared, anxious, nervous and overflowing with questions. Can anyone give me any information about the length of the hospital stay or more of what to expect after? Also any tips on helpful things to do to stay healthy after my surgery. Any information would be greatly appreciated.
Thanks.

icemantoo's picture
icemantoo
Posts: 1510
Joined: Jan 2010

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.

NWKeith
Posts: 8
Joined: May 2010

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.

Beejay51
Posts: 3
Joined: Jun 2010

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.

ltingle
Posts: 3
Joined: May 2010

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.

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