Recovering from radical nephrectomy

garym said:

new guy
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
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.

Keep on keeping on!
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 said:

Insist on getting scans every 6 months to year
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!

My son
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 said:

wendy i too had the radical
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

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.

dianabquilter4 said:

wendy i too had the radical
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

Hello from Malaysia
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!

Very Nervous
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 said:

It is OK to be nervous
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.

In the same boat
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.

A_New_Journey said:

I too, recently had a radical nephrectomey
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".

Can I check in and see how you are doing
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

ltingle said:

Very Nervous
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.

Hello, I gather, you are
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.