RCC Chromophobe

Texas_wedge

keithafroehlichsr said:

new diagnosis not sure what to think

Hi Folks.

After reading some of your stories---I am a bit more concerned about my situation. First let me say I am sorry you are all experiencing this health crisis too!! I am wondering if anyone here has any suggestion for me about waiting for scans annually VS every 6 mo??? I just returned from National Institute of Health (NIH) from post Neph surgery follow up. My HX- incidental finding multifocal bilateral masses 9/12. I had 15 tumors --2- 8cm, a couple 6cm, some 4cm-one in the renal pelvis, and smattering of lesser sized ones removed from the left on 1/8/13. My current creatnine is 1.58-amazing!! I have 8 tumors in the right, 3 of which are 8cm plus. I was told that 14 of the 15 tumors taken from the left are Oncocytomas and that one was "marked nuclear atypia with focal extension into the fat" the doctor telling me this said probably some hybrid Chromophobe but that the "team was stumpped" as to what it really is. He also said what I presented with is incredably rare but I will die with it and not because of it. I am 62. The surgeons have decided that because bilateral masses are usually 'concordant"-- what's in one side is in the other-- they will do active surviellence annually on the right and not remove it as origianlly planned. 

Reading this site I can see that while chromophobe is low grade and slow growing it seems that it can and does spread and reappear in partial Neph. So what is concerning is why would this doctor have such a casual conversation with me about the risk??? I left very happy and feeling I would not have any other problems with my Kidney's!! Now I am not so sure.

I was also just DX on 3/18 with prostate cancer- gleason 9 --6 of 12 cores 7+. I have a persistant pain in my scapular (the reason I found the kideny masses back in September) which has never been imaged or scanned--I was told it is muscular skeletal pain and not to worry. The same doctor that shared the above kidney pathology news is handling my prostate problem soIi am hoping he will order a bone scan and not be so casual about the prostate problem.

Informed advice

Keith, there are a few members here who may be able to pass useful comments (alas, that doesn't include me)  but no-one with anything like the expertise of your doctor at Bethesda - presumably you are seeing a top RCC/prostate medical oncologist?  Yours is an unusual situation and there's unlikely to be anyone here with deep knowledge of the relevant issues.

Have either you or Judy joined Smart Patients (the successor in the making to ACOR's KIDNEY_ONC) where you should be able to tap into a range of professional opinions?

Have you pressed your doc for a thorough explanation of why watch and wait is being recommended for the kidney problems? Perhaps the thought is that the prostate dx is more urgent to tackle than the kidneys.  Oncocytoma must be a better dx than RCC and if you had the closely related chRCC in only one instance, small, and now removed, the prospect of metastasis seems fairly remote (I guess the statistical probability of concordance is high enough that they presume all contralateral tumors will be oncocytomas and therefore not too worrying).

CSN here also has a prostate cancer forum - have you looked over there?  Prostate is a cancer where there's been much better advance in treatment than in kc, which is also encouraging.

one putt

keithafroehlichsr said:

new diagnosis not sure what to think

Hi Folks.

After reading some of your stories---I am a bit more concerned about my situation. First let me say I am sorry you are all experiencing this health crisis too!! I am wondering if anyone here has any suggestion for me about waiting for scans annually VS every 6 mo??? I just returned from National Institute of Health (NIH) from post Neph surgery follow up. My HX- incidental finding multifocal bilateral masses 9/12. I had 15 tumors --2- 8cm, a couple 6cm, some 4cm-one in the renal pelvis, and smattering of lesser sized ones removed from the left on 1/8/13. My current creatnine is 1.58-amazing!! I have 8 tumors in the right, 3 of which are 8cm plus. I was told that 14 of the 15 tumors taken from the left are Oncocytomas and that one was "marked nuclear atypia with focal extension into the fat" the doctor telling me this said probably some hybrid Chromophobe but that the "team was stumpped" as to what it really is. He also said what I presented with is incredably rare but I will die with it and not because of it. I am 62. The surgeons have decided that because bilateral masses are usually 'concordant"-- what's in one side is in the other-- they will do active surviellence annually on the right and not remove it as origianlly planned. 

Reading this site I can see that while chromophobe is low grade and slow growing it seems that it can and does spread and reappear in partial Neph. So what is concerning is why would this doctor have such a casual conversation with me about the risk??? I left very happy and feeling I would not have any other problems with my Kidney's!! Now I am not so sure.

I was also just DX on 3/18 with prostate cancer- gleason 9 --6 of 12 cores 7+. I have a persistant pain in my scapular (the reason I found the kideny masses back in September) which has never been imaged or scanned--I was told it is muscular skeletal pain and not to worry. The same doctor that shared the above kidney pathology news is handling my prostate problem soIi am hoping he will order a bone scan and not be so casual about the prostate problem.

shoulder pain

Hi Keith,

 I had a radical rt nephrectomy 11-1-11 laproscopic and partial open. Initially my scans revealed it had metasticized only to my lungs. In late March 2012,      I began developing pain in my rt. shoulder that rapidly grew worse. I was scheduled for an MRI thinking it may be a rotator cuff issue. My oncologist ordered a CT scan of my shoulder prior to my MRI which revealed a tumor in my rt. scapula. I would urge you to ask your doctor to have the area scanned. Good luck !

RebeccaBenoit

Chromophobe

10cm, left kidney. Radical open nephrectomy, adrenal gland left. Clear margins. So stage II, Grade 3.

 

I am two years post op, last scans in April. Recently discovered that my left ribs (same side as the surgery) are easily twice the size of the right, and slightly sore.

 

I'm having both an abdominal CT as well as a chest.

 

Could this be mets to the ribs? Spleen? Anyone have this NOT be a reoccurence?

 

I have the worst scanxiety!

 

Oh, I am 34. I was 32 (F) at diagnosis, and who KNOWS how long I had, had it for before the incidental finding.

foxhd

RebeccaBenoit said:

Chromophobe

10cm, left kidney. Radical open nephrectomy, adrenal gland left. Clear margins. So stage II, Grade 3.

 

I am two years post op, last scans in April. Recently discovered that my left ribs (same side as the surgery) are easily twice the size of the right, and slightly sore.

 

I'm having both an abdominal CT as well as a chest.

 

Could this be mets to the ribs? Spleen? Anyone have this NOT be a reoccurence?

 

I have the worst scanxiety!

 

Oh, I am 34. I was 32 (F) at diagnosis, and who KNOWS how long I had, had it for before the incidental finding.

Could be

Rebecca, it is premature to speculate on what it could be. When is your scan? Good luck. I hope it is soon.

RebeccaBenoit

foxhd said:

Could be

Rebecca, it is premature to speculate on what it could be. When is your scan? Good luck. I hope it is soon.

scans

Tomorrow morning

Jimmy1925

loriks said:

RCC
I had a laproscopic nephrectomy in March and also chromophobe. I had a 3.5 cm tumor, Grade 2-Stage 1. It is considered a cure-but who knows. I have a 3 month check in early August. It was found incidentally which I am very thankful for.

I stayed home off of work for 7 weeks. Moved slowly but feel good now.

chRCC

I just recently had a Left robotic partial nephrectomy in August. My tumor size was 2.3 chRCC. The surgeon stated that is was a slow grade cancer. However no grading was on the report. What makes it a Grade 2 stage?  How are you feeling now?