Is a radical nephrectomy worth it in stage 4?

Akamur

My husband, now 44, was diagnosed with stage 4 RCC in May 2020. First symptom was pain in his leg due to a fast growing bone met. He had an 11cm tumor removed from his leg with titanium rod to replace his femur and total knee replacement. His primary kidney tumor was also around 11cm. He had several small tumors in his lungs. He was started on Opdivo/Yervoy in late May 2020. The Opdivo/Yervoy has truly been a miracle drug for him but not without terrible side effects. His tumors are all gone except for the primary kidney tumor which has shrunk to around 3cm and one tumor in his lung which is about 2.5cm. Both of these tumors are currently deemed metabolically inactive and are mostly calcified. Anyway, as far as terrible side effects, my husband's adrenal glands were completely destroyed by the immune mediated effects of Opdivo and he now has to take daily hydrocortisone supplements to survive. His oncologist didnt recognize what was going on with him and he came very close to dying before another oncologist sitting in for her recognized what was going on. He also has pretty profound thyroid damage and immune mediated pneumonitis.

     For the past couple of months, my husband has been having random extreme pain attacks in his left abdomen (tumor in left kidney) that have forced us to go to ER.The pain is definitely a 10 and completely uncontrollable with his usual hydrocodone. IV fentanyl or morphine is the only thing to get it under control. Anyway, after discussing this with his oncologist, she said that maybe removing the kidney tumor will help with this and arranged for us to see a urology oncologist who would perform the surgery. The urology oncologist said that there is no guarantee that removal of the kidney will resolve the pain As it may not be related to the tumor (but he said that it could be as well). They have pretty much ruled out immune mediated colitis as the cause for pain because a couple of the times that we went to ER there was no colitis on CT and nothing found on colonoscopy a couple of weeks ago.

      My husband has put it on me to decide whether or not he needs this surgery. Frankly, I have no idea. He is the one who will have to suffer through the recovery. I hate to think about putting him through all of this for nothing if it doesn't help with pain and just weakens him. We talk about seeing another oncologist but since we live way out in a rural area and I also have health issues and do not really drive, we are kind of limited on options.

    

icemantoo

No one can make this decision for him

Speaking as someone who had the surgery 19 uears ago, there is no way to sugarcoat the surgery. Have a long talk withh the surgeon and Oncologist abd make yout decision. I waterskied 11 months after my surgery. May you make the right dececision.

 

 

 

 

icemantoo

cubsfan9

Good Morning, Akamur!

Good Morning, Akamur!

I'm sorry you and your husband are going through this.  I have no answers to your questions, but I do have some questions...

Your husband is very young to have kidney cancer...has he had genetic testing?  (This can affect treatment)

I note that you say "fast growing"...does he have clear cell or one of the variants?  (This also affects treatment decisions)

His situation seems rather complex...is he seeing an RCC specialist or local oncologist?  If I were you, I would seek a second opinion with someone who has a lot of experience with kidney cancer.  Where are you located?  If you are interested in more suggestions, I might recommend joining smartpatients.com.  Members of that forum are helpful in offering names of specialists in your area and might have other suggestions/answers to your questions.

 

John7022019

I did last year

Doctors talked about signals from the kidney of original primary tumor to help mets to grow in other locations. My shrank tumor is also 3" from original about 10" after Keytruda and Inlyta treatment. The pathology report said no cancer cell was found in the removed and damaged kidney. But what ever, I still like my decision. Now, the one healthy kidney helps me no different in daily life. So, radical nephrectomy may not be a scared thing.

However, I still think you need to discuss with your doctors. 

Akamur

cubsfan9 said:

Good Morning, Akamur!

Good Morning, Akamur!

I'm sorry you and your husband are going through this.  I have no answers to your questions, but I do have some questions...

Your husband is very young to have kidney cancer...has he had genetic testing?  (This can affect treatment)

I note that you say "fast growing"...does he have clear cell or one of the variants?  (This also affects treatment decisions)

His situation seems rather complex...is he seeing an RCC specialist or local oncologist?  If I were you, I would seek a second opinion with someone who has a lot of experience with kidney cancer.  Where are you located?  If you are interested in more suggestions, I might recommend joining smartpatients.com.  Members of that forum are helpful in offering names of specialists in your area and might have other suggestions/answers to your questions.

 

Hello

My husband has clear cell. I do not believe that his RCC is due to any genetic history. My husband knows over 100 of his relatives and several generations back (we are Native Americans). no one in his family has had kidney cancer but he has had definite exposure to carcinogens as a former federal wildland firefighter. There have been several cases of RCC among young Native American wildland firefighters. Our daughter will be screened for RCC starting at a young age regardless of the cause of my husband's RCC because my grandfather died of RCC at a young age and there is a possibility that my grandfather's RCC may have been genetic. (I asked my PCP to do a CT of my kidneys not too long after my husband was diagnosed). We will stay within our insurance's network of oncologists that they have treatment agreements with (we work for a tribal entity that utilizes Indian Health Service funds along with our insurance to make sure that we have $0 out of pocket expenses. My husband is in NED so I don't want to rock the boat so to speak).

  Anyway, I am kind of seeking personal accounts of what it is like to recover following a radical nephrectomy- how long before a person can feel comfortable doing daily activities like driving, sleeping on your back comfortably,etc. and if anyone had recurrence in the other kidney ( I am aware that this happens commonly in RCC caused by von Hippel-Lindau disease).  My husband is in NED so I am not quite sure if the benefits outweigh the risk to him. It was suggested by his oncologist only because he is having random intense left sided abdominal pain. We consulted with  the urology oncologist who is going to do the surgery and he told us that he wasn't sure if doing the nephrectomy would fix the pain but if it does, he will take the credit.

Akamur

John7022019 said:

I did last year

Doctors talked about signals from the kidney of original primary tumor to help mets to grow in other locations. My shrank tumor is also 3" from original about 10" after Keytruda and Inlyta treatment. The pathology report said no cancer cell was found in the removed and damaged kidney. But what ever, I still like my decision. Now, the one healthy kidney helps me no different in daily life. So, radical nephrectomy may not be a scared thing.

However, I still think you need to discuss with your doctors. 

Thanks for the info

We have talked to our primary oncologist as well as the urology oncologist. An ER doctor had suggested that we mention nephrectomy to our primary oncologist and when we did, the oncologist went from being sure that it wouldn't be worth it to reconsidering and telling us 5 minutes later that it might be a good idea but she didn't really elaborate as to why other than to say that maybe we can stop immunotherapy if we get the primary tumor out. Your information about signaling from the primary tumor is helpful. I appreciate you taking the time to talk about your nephrectomy.

Akamur

icemantoo said:

No one can make this decision for him

Speaking as someone who had the surgery 19 uears ago, there is no way to sugarcoat the surgery. Have a long talk withh the surgeon and Oncologist abd make yout decision. I waterskied 11 months after my surgery. May you make the right dececision.

 

 

 

 

icemantoo

Thanks for the response

When we talked to the surgeon, we were in his waiting room for hours before we got to see him and when we did see him, it seems like he kind of sugarcoated it- robotic surgery, small incisions, in and out of the hospital in a couple of days, etc. That is why I like real patients' input. By the way, congrats on being a long term survivor.

tgpath1

Akamur said:

Hello

My husband has clear cell. I do not believe that his RCC is due to any genetic history. My husband knows over 100 of his relatives and several generations back (we are Native Americans). no one in his family has had kidney cancer but he has had definite exposure to carcinogens as a former federal wildland firefighter. There have been several cases of RCC among young Native American wildland firefighters. Our daughter will be screened for RCC starting at a young age regardless of the cause of my husband's RCC because my grandfather died of RCC at a young age and there is a possibility that my grandfather's RCC may have been genetic. (I asked my PCP to do a CT of my kidneys not too long after my husband was diagnosed). We will stay within our insurance's network of oncologists that they have treatment agreements with (we work for a tribal entity that utilizes Indian Health Service funds along with our insurance to make sure that we have $0 out of pocket expenses. My husband is in NED so I don't want to rock the boat so to speak).

  Anyway, I am kind of seeking personal accounts of what it is like to recover following a radical nephrectomy- how long before a person can feel comfortable doing daily activities like driving, sleeping on your back comfortably,etc. and if anyone had recurrence in the other kidney ( I am aware that this happens commonly in RCC caused by von Hippel-Lindau disease).  My husband is in NED so I am not quite sure if the benefits outweigh the risk to him. It was suggested by his oncologist only because he is having random intense left sided abdominal pain. We consulted with  the urology oncologist who is going to do the surgery and he told us that he wasn't sure if doing the nephrectomy would fix the pain but if it does, he will take the credit.

I had stage 3 RCC of the left

I had stage 3 RCC of the left kidney and had a radical nephretomy.  I was told that it "jumping" to the other kidney is highly improbable and that if there is a recurrence, it would be a differnt location or the empty cavity where the kidney was.  My treating doc is Dana Farber and assures me that I do not have to worry about cancer in my right kidney.  

As for recovery, my personal account was that it was a very tough recovery for a few weeks.  But by week 6, physically, it's like it never happened.  I was able to sleep on my back but only because I had an adjustable bed.  Laying flat was pretty uncomfortable and not condusive to sleeping.  I'm a side sleeper and that was really tough unless I used a body pillow between my legs...that put me in a better position for sleeping.  I also struggled to shower for about a week.  I didn't have much strength and standing for too long made me lightheaded.  So the two things I wish I had known to have were a body pillow and shower chair! I was not recovered enough to really move about comfortably until about 4 weeks post op.  Everyone says to walk and that helps but it's a struggle for a bit  My husband was home with me for two weeks to cook for me and that was hugely helpful.  By the end of two weeks, I could fend for myself but did not feel comfortable returning to work until after four weeks (mostly becasue of fatigue).  Everyone is different and your husband may have an easier or more difficult time...but that was my experience.  I am now almost five months out and feel no different than I did pre surgery.  I didn't have a choice on the nephrectomy but honestly, knowing it was cancer, I wanted it out!   

stub1969

I'm afraid you'll get a lot of different opinions to your question, Akamur, simply because of the number of variables that can be present.  Two of the biggest variables (IMO) are the health of your husband and, second, the type of surgery.  Will they do an open or laparoscopic nephrectomy?

I'm sorry your family is going through this, but I'm glad you are reaching out and asking questions and opinions.  I don't think you can go wrong with an informed decision.

Wishing you only the best!

Stub

Supersum

Good opportunity

His response so far has been excellent a large primary tumor reduced to a small tumor of a size normally removed with a partial nephrectomy.

How long do you want to continue with level 10 pain taking you to ER?

It's a great opportunity to get the thing removed. An added bonus is if you have a highly competent and skilled surgeon they can have a look around and see what is going on if there is anything that needs attention not showing up on the scans.

Recovery is not that bad I think you are overdramatizing the recovery process. Sure there is pain but it is a pain we know is going to go away, we know the patient is going to improve as he starts walking and moving around. In some ways it is probably more bearable by most males who might have a higher pain threshold plus more of a warrior spirit to get them through these things. This does not apply to all males of course, it is only a stereotype, but maybe it applies to your man I don't know.

Separately to that, as a couple you can rejoice in his recovery process, you can appreciate what he accomplishes as he extends how far he can walk each day. You can drive to a park on a sunny day and have a walk and a sit. 

You are currently repeat visiting ER with recurring level 10 pain. It is rare for anyone to attend ER with unbearable pain caused by a nephrectomy. I cannot understand why you think a nephrectomy would be so bad when it would not be as bad as what you are currently experiencing.

If there was absolutely no pain in the abdominal area it would be an interesting discussion regarding whether the thing should come out or not. With this extreme pain he is experiencing you are really being pushed to get it out. Even more so if you have a highly competent surgeon lined up.

If you head down the nephrectomy path you can do a lot of things in the prepararation phase and planning for the recovery. Make sure you start this early so everything is in place when the time comes.    

All this is my opinion and not medical advice, other people will have different opinions which might be better informed than mine.

AliceB1950

Mine was only stage 1 at

Mine was only stage 1 at exactly 7 cm. I had a laparoscopic nephrectomy in September of 2018 when I was 68. I was sent home the day after surgery, and the first 3 days took a lot of effort to get moving around. After that, it was a gradual improvement. I walked around a lot in the house, and a little over a week later, I was walking on short trails in a local park. IF the surgery takes care of the pain he's experiencing, his recovery should be smooth barring complications. But since they haven't pinpointed the source of his pain, that's harder to predict. Hoping for the best for him and you!

donna_lee

Stage 4 and my response

Click on my user name to read what I went through 15+ years ago.  That's faster than me retyping it.  This was what I wrote when I first joined this group 10 years ago. Not much has changed except I'm older, still see Oncologist or his PA every 6 months, still have a CT about once a year

I realize your husband's issue is more complicated; and trying to keep the expenses down may be limiting you from seeking a referral to an Onc. specializing in Renal Cancers.  I'm glad the drug cocktail worked for him. Sending all best wishes and hoping for the best to both.

donna_lee