RCC Chromophobe

RCC chromophobe
I was found to have a 14 cm kidney tumor and had a radical nephrectomy in march. My pathology showed chromophobe subtype, which is quite rare, only 2 - 5% of all RCC's. The good news is, it is much less aggressive than the other subtypes, and extremely slow- growing. The most important thing you need to do is get the routine follow-up scans. My doctor wants me to have PET scans & non-contrast CT scans every 6 months for 5 years. If anything recurs, which I pray everyday it does not, then treatment is surgical removal.

RCC Chromophobe
My Dad had a rather large RCC Chromophobe tumor (I cannot remember the exact size) in his kidney and had it removed in 2008. They checked on him every 6 months for any recurrence. I am sad to say that the first of January 2011, we learned that he now has 4 tumors that have spread (all RCC Chromophobe). He's currently getting radiation and taking Sunitinib. He has a small one near his spine, a large one encasing one rib, and another near his shoulder blade, and one other that I can't at the moment remember where it is. They are beginning treatment to the one by his spine in order to prevent paralysis. Then, moving on to the largest one encasing a rib. I try to remember this is a slow moving cancer and am praying for the best.

Hope all goes well for you, too!!

Cassie

BG said:

I just recieved my pathology
I just recieved my pathology report last week, chromophobe stage I grade 2 at 3.9 cm. As there is not information on this subtype I am trying to get an oncologist referral to get more information.

BG

If you im me with your
If you im me with your email, I can forward you some reports about chromophobe i got from acor.org

BG said:

thanks in advance for info!
Thank you Jona187,

My email is brentharpham@yahoo.com

Take care, and I wish you, your wife, and family the best.

Brent

sent from my gmail acct.

sent from my gmail acct.

Chromophobe

I had a right radical nephrectomy on March 1,2012, and the pathology report came back as Chromophobe. I just had my 3 month scan and it came back with the all clear.

Shannon

My dealings with multifocal chromophobe renal cell carcinoma
The first of September 2011 I had been having sinus problems and was scheduled for surgery the 5th of Sept. The week before I did all the surgery pre-labs and chest x-rays for the surgery. This surgery was done as an out-patient. When we were about to leave the hospital the ENT doctor mentioned that the chest x-ray showed some areas of concern and I should have a CT scan done of my chest. So while recovering from the sinus surgery, we had the CT scan done. A few days later my primary care doctor’s office called and told me that there were 3 small spots on lungs, but were so small that they were of no concern. But this scan caught a part of my abdomen and there was a concern of one of my kidneys. So we scheduled another CT of the abdomen. A few day later my phone rang and rather than on of the doctors nurses on the phone it was my doctor. He told me that the CT scan showed a 6.7cm mass in my left kidney and he would schedule me with a urologist. And he thought that I would have to have a laproscopic nephrectomy. On the 10th of October we had made a two page list of questions for the urologist and his recommendation was the same as my family doctor, a total nephrectomy of my left kidney. On Tuesday Oct. the 25th I went into the Rockdale hospital and had laproscopic nephrectomy surgery. My Urologist thinks all of mass was contained in kidney. The type of cancer is multifocal chromophobe renal cell carcinoma. My first post op cat scan was clear, the second 3 months later showed a 2 cm. mass on my right kidney. My urologist referred me to the radiology department at St. Joseph’s Hospital in Atlanta for a Cryoablation procedure on the mass. My doctors, wife and I decided that this is the least evasive procedure to preserve my remaining kidney. This procedure destroys less of the functioning kidney tissue. On May 16th they froze a 2.7cm. tumor. Last Fridays June 29th follow-up visit at St. Josephs Hospital was with mixed feelings. The CAT scan confirmed the Cryoablation (freezing) of the tumor last month was successful, it is gone!! But the CAT scan also showed 2 more masses that are approximately 1 cm each. We will go and have those suckers frozen too on July 20th. My radiologist will be my best friend for quite a while.

myboys2 said:

Rare variant
My son has mucinous tubular and spindle RCC which is supposed to parallel Chrom RCC. He is currently trying IL2 on his second week. He has had is left kidney removed, several skull mets radiated or removed replaced w titanium, and he has 3 small liver mets. The liver mets are the goal to tackle with the IL2. We also have hip and femur. But, we have not had any new evidence of disease since our original diagnosis. I was wondering what the treatment will be for your disease? I have studied some of the chemo regimes for this variant and it can be very successful which will be my next question if the IL2 is not successful. Thanks for you thoughts Gail N mother of Cody 21.

Rare variant
I'm not sure who you were addressing your question to, Gail.

Assuming it's wufmew, she has moved from Sutent on to Torisel and I hope she'll keep us posted on how she's doing and that she will draw extra support from us.

For me there's 'no standard treatment'. So, I'm hoping surgery has done the job. Dr. Dutcher told me that, failing surgery, her regimen for sarcomatoid would be chemotherapy. Being with her, you are in the hands of one of the world's greatest experts on rare sub-types of RCC.

RCC Chromophobe
I was diagnosed in December 2010 with a 10cm Chromophobe RCC on my left kidney and had a laparoscopic radical nephrectomy. My first couple scans have been clear but last week my routine chest x-ray turned up some multi-node goiters on my Thyroid. I’m still waiting to find out if it is cancer (or not)…

I am alive said:

Chromophobe
Eight years ago an 11cm tumor was discovered in my right kidney. After the nephrectomy I was diagnosed with chromophobe kidney cancer. The tumor was contained within the kidney. I had clear MRIs every six months for three years. At the suggestion of my then urologist I waited a full year before having another MRI and wouldn't you know it - three cancerous lymph nodes had grown between my aorta and vena cava. (I regret waiting that year between MRIs - I could have insisted on the test at six months, but I didn't. Note to self: Speak up!) Happily I found a surgeon who felt confident he could do the tricky operation - a retroperitoneal lymph node dissection - and it was successful! Three years later a small lesion appeared on my L1 vertebrae and that was successfully treated with one session of targeted radiation therapy. That was in January. Since then the CAT scans have shown two tiny cancerous growths deep within my right groin area, and another deep within the chest. My oncologist at Memorial Sloan Kettering Hospital in New York City has started me on a clinical drug trial specifically targeting the very rare non clear cell renal carcinomas of which chromophobe is one. Every day I take an Affinitor pill (also known as Everolimus) and every two weeks I travel to NYC for a 20-minute infusion of Avastin (also known as Bevacizumab). So far I've gone through two rounds,been about a month. I feel great and I am incredibly grateful to have found my oncologist and this unique drug trial. I don't know yet if the drug combination is working its magic - a CAT scan down the road will determine that. But I am thrilled to be participating in the trial. At this point I'm amazed that I'm eight years out. I try not to think too much about that, or too far ahead into the future. But overall, I'm pretty optimistic. Stay positive. There are plenty of reasons to be that way. And good luck!

Aggressive chromophobe
I am alive, would you care to tell us your age, gender, stage, grade and whether your histology featured sarcomatous change and/or necrosis? Does your lifestyle involve high risk factors (e.g. smoking, surplus weight, hypertension etc)? We've seen above, on this thread, that chromophobe doesn't always follow the vaunted pattern of indolent growth with no metastasis! Have your recurrences all been confirmed as chromophobe?

Glad to hear how well you're feeling and hoping that the Everolimus/Bevacizumab combo is going to pay dividends.

May I also ask who the surgeon was who did the retroperitoneal lymph node resections?

Presumably the reason for the earlier MRIs was fear of excessive radiation exposure with the older CT technology and now that fear has dimished with the latest scanners?

I am alive said:

Chromophobe
Eight years ago an 11cm tumor was discovered in my right kidney. After the nephrectomy I was diagnosed with chromophobe kidney cancer. The tumor was contained within the kidney. I had clear MRIs every six months for three years. At the suggestion of my then urologist I waited a full year before having another MRI and wouldn't you know it - three cancerous lymph nodes had grown between my aorta and vena cava. (I regret waiting that year between MRIs - I could have insisted on the test at six months, but I didn't. Note to self: Speak up!) Happily I found a surgeon who felt confident he could do the tricky operation - a retroperitoneal lymph node dissection - and it was successful! Three years later a small lesion appeared on my L1 vertebrae and that was successfully treated with one session of targeted radiation therapy. That was in January. Since then the CAT scans have shown two tiny cancerous growths deep within my right groin area, and another deep within the chest. My oncologist at Memorial Sloan Kettering Hospital in New York City has started me on a clinical drug trial specifically targeting the very rare non clear cell renal carcinomas of which chromophobe is one. Every day I take an Affinitor pill (also known as Everolimus) and every two weeks I travel to NYC for a 20-minute infusion of Avastin (also known as Bevacizumab). So far I've gone through two rounds,been about a month. I feel great and I am incredibly grateful to have found my oncologist and this unique drug trial. I don't know yet if the drug combination is working its magic - a CAT scan down the road will determine that. But I am thrilled to be participating in the trial. At this point I'm amazed that I'm eight years out. I try not to think too much about that, or too far ahead into the future. But overall, I'm pretty optimistic. Stay positive. There are plenty of reasons to be that way. And good luck!

You Are Alive
And you have quite a story to tell.

I LOVE the fact that even though your journey hasn't been perfect(MRI delay), you emit no negative anger, pity, resentment. You sound completely at ease with your medical staff and are appreciative of what they've done and continue to do for you. I feel certain your optimism, confidence, and gratitude is playing a huge role in your success. You are an inspiration to all of us reading your trials. Please keep posting.