Chromophobe RCC

dannyboy1969 said:

Chromophobe RCC

I'm a newbie to this site and I tried to post something earlier but must have done something wrong.  Shocker.  Last week my wife underwent a Left Radical Nephrectomy.  Tumors weren't too large, but (2) were present and turned out to be Chromophobe RCC.  What concerns me is the involvement of her lymph nodes.  9 nodes were removed and (3) were positive for Metastatic Chromophobe RCC.  Her surgery was at Mayo and went well and I'm trying to learn as much as I can about this.  I am still trying to process this and thought I'd find someone or somewhere to go to reach out for help.  We were told by her surgeon to follow every 3 months for the first 2 years and every six months after year 2.  During our first 3-month visit to Mayo, the doctor will get us connected to an oncologist there in Rochester.  It sounds like Chromophobe RCC is slow growing, but the metastasis scares me.  Also, since it involves the lymph nodes, it appears that our new normal moving forward is to be vigilant in our scans.  Prognosis is impossible to pinpoint, but I just want an idea of what might be ahead for us. 

Dannyboy, I had a 16 cm Chromophobe tumor, 3 positive lymph nodes, that was 5 years ago. I have had clean scans for five years now. There are no answers out there to be found about your wife's prognosi. Like me, she is very rare, metastatic Chromophobe without sarcomatoid features is a disease without a prognosis. That was hard for me to accept at first, I am at pease with it now. Your only answers for now, are best found right here on this network. I hope this helps.

dannyboy1969 said:

Wife Update

Greetings All.  Hope this note finds you well.  My wife continues to improve and goes back to work next week.  We have pretty much come to grips with this (as much as you can) and are looking forward to our first visit to Mayo post surgery.  We are scheduled for bloodwork, chest xray, and CT followed by a sit down with the oncologist to wrap up our trip to Rochester.  Hopefully things go well and I'll report back with the findings.  Have a great holiday season everyone.

So happy to hear she is doing well!!! Onward and upward! Have a great Christmas!!!

Hi... I am glad that I just found this thread while searching. Thought would give me some peace of mind...

So I was diagnosed with PT1bN0M0 ChRCCC 7 years back, had radical nephrectomy in 2011, have been following a follow-up plan ever since... first year 3 times CT scan of chest/ab/pelvis (3m/6m/1y),  2 times in 2nd and 3rd year CT scan of chest/ab/pelvis (6m/1y), then yearly on 4th and 5th year and 2 yearly after that.

Now all the time my I did CT, it came clear so far, save for perifissural lung nodules. They have been infrequent, one have been there since the first time, others coming and going. But everytime the CT reported benignity is favored.

Now I have done these CTs in 3 different locations over the last 7 years as I have moved frequently, but neither of these 3 places had any positive met outcomes.

Now, my concern is, during my CT in 2015, they found a 6mm perifissural nodule which they said is likely a benign peripheral lymph node. My pcp and urologist said no concerns and follow up in 2017. I did and this time in a different state, under different pcp. This time they measured it to be 8X3mm. Interestingly, the radiologist confirmed it to be perifissural lung nodule, likely to be benign subpleural lymph node and said there is no evidence suspicious for metastasis. They did not suggest any follow up for this. However, my PCP still forwarded me to a pulmunologist considering my history. Pulmunologist said, he finds them highly likely to be benign, but since my PCP forwarded me to him, he will follow it through and want a 3 month follow up and go from there. He said although 6 mm to 8mm in 2 years doesn't mean much, it could be measurement deviation in two different places, but 8mm is a cut off line.

Now I am torn apart. My experience so far says, radiologist gives a final call on the tumor type, and pcp/specialist acts on the basis of that. The radiologist here seem to be confident about it, but my PCP still wants to follow it up. I did some research which says perifissural nodules are not to worry about compared to pulmonary lung nodules. But am I missing something? Is 3 month too much? Anybody has any experience?

P.S. I was a former smoker, quit smoking after initial diagnosis.

Hi everyone.  I am new to all of this.  I was diagnosed with kidney cancer on 10/13/17 after a visit to the ER due to abdonimal pain following an IVF egg retreival procedure (we were trying for baby #2).  I had a right radical nephrectomy on 11/02/17.  My tumor was 9.8cm.  After the surgery i developed a pumonary emboli.  Patholgy confirmed it was Chromophobe RCC.  And I was classified as T2A N0 M0 grade 3 tumor.  I was not referred to oncologist but requested to meet with one for peace of mind.  It is difficult because there is little information on this sub type of RCC.  I am happy I found this fourm with others that have has similar experiences.  I am having a hard time with anxiety since my diagnosis.  I am trying to stay positive and live in the moment, but i am finding that very challenging some days.  I have a follow-up CT scan for the pulmonary emboli an Feb.  Initially my urologist wanted to wait 6 months for my first follow up scan but he agreed to do the first one at the same time at the chest CT so I dont have to have the contrast die 2x in 3 months.  

My chromophobe RCC was removed via radical nephrectomy on 12/1/16. I was age 41/male and have never smoked, non-drinker with a decent fitness level and low BMI, so my profile did not align very well with the typical RCC risk factors (which I'm sure is true for many of us). The right kidney was completely taken out, and the tumor was 9.2 cm, confined to the kidney, grade 2, non-sarcomatoid and no lymph node involvement. In June this year I had a chest scan at the 6 month checkup point which showed nothing of significance.

As it has now been one year since the surgery, I'll be getting a full thorax/abdominal CT scan with IV contrast in the near future. There is definitely a degree of anxiety despite the fact I don't have any visible health concerns at the moment and the surgeon was confident that he didn't leave behind any tumor cells. I haven't gone a single day without thinking about kidney cancer since my surgery so the mental battle has been worse than the physical one. Last year before the surgery the CT scan identified some minor lung scarring and a tiny simple cyst, so I don't expect a perfect report, but am hoping to never read the dreadful phrase "solid mass" again. The 'NED' reports other patients have received make me feel so much better and I sincerely hope there are many more of those ahead for as many of us as possible.

stub1969 said:

Hi, Sarah

Welcome!  I'm glad you found this site.  I was diagnosed almost a year and a half ago with surgery soon after.  I've had two follow-up scans so far and go for my third scans tomorrow.  As time passes, the anxiety does get better.  I think we'll always think about cancer, it just stops taking up all our thoughts.  I'm probably a little unususal in that during my baseline scans they also found a tumor on my thyroid.  Thankfully, it was a second primary rather than metastic activity.  A month after my partial nephrectomy I had a full thyroidectomy.  I was 47 and healthy.  Running, lifting weights, and eating right.  Cancer--me??!!  My belief of being indestructible came crashing down quickly.  The shock and disbelief I had did consume me--at first.  I guess you could say I went through a stage of mourning.  But, I made the decision that even though cancer robbed me of my normal life, it was not going to rob me of moving forward and living.  I've found a sort of peace with my new normal now.  Give yourself time to find and accept your new normal.  Trust me it does get better.

Sending and wishing you only the best.

Stub 

So kidney cancer is 2% of all cancers, chromophobe is 5% of that 2%, I was 29 when I was diagnosed, so that is some other 0.1% chance... and finally... i did not have a single cancer incident in either side of family... so all together had 0.0001% chance of having malignancy... may be winning a multimillion dollar jackpot has better odds... starting to find ourselves too special i guess... hang in there... that’s all we can do...

Welcome.  I'm glad your surgery was successful and your first scan was NED.  Certainly (at least I like to thinkg this) prior good health has to account for something in our long-term prognosis.  That mental battle that you talk about certainly is difficult to conquer, especially when you have aches or pains.  My first thought always turns towards cancer.  Fortunately, our cancer is considered less agressive and slow growing.  Although my tumor was a little over 5 cm my doctor thought I had the tumor for close to 10 years.  

Good luck in your next scans.  Please keep us posted.  As I said in an earlier post, we're a rare group.  Hopefully we stay in touch and learn from each other.

Blessings

Stub

stub1969 said:

Hi Jas

Welcome.  I'm glad your surgery was successful and your first scan was NED.  Certainly (at least I like to thinkg this) prior good health has to account for something in our long-term prognosis.  That mental battle that you talk about certainly is difficult to conquer, especially when you have aches or pains.  My first thought always turns towards cancer.  Fortunately, our cancer is considered less agressive and slow growing.  Although my tumor was a little over 5 cm my doctor thought I had the tumor for close to 10 years.  

Good luck in your next scans.  Please keep us posted.  As I said in an earlier post, we're a rare group.  Hopefully we stay in touch and learn from each other.

Blessings

Stub

My scan with IV contrast is scheduled for next Tuesday 12/12. The urologist had said previously that it's best if I only get the abdominal scan with IV contrast once a year, so the midyear scans are just basic chest x-rays and thus the abdominal area (including the remaining kidney) were not in scope at all. Getting some more substantive reassurance in the midst of the holiday season would go a long way towards reducing my anxiety.

It would be great if there was a means to calculate the age of a tumor in pathology, so maybe we could trace the beginning of the cancer to a particular period in the past. Perhaps it started when I had a bout of pneumonia or during a time when I was careless about food choices. But I have to accept that there will probably never be any clear answers. Hopefully research will reveal more about chromophobe RCC in the future since as it stands right now, there is so little known about the cause of this rare variant and treatment options beyond surgery. Reading about others' experiences certainly helps, and I appreciate your kind words. 

SarahD1983 said:

New Chromophobe to the group!

Hi everyone.  I am new to all of this.  I was diagnosed with kidney cancer on 10/13/17 after a visit to the ER due to abdonimal pain following an IVF egg retreival procedure (we were trying for baby #2).  I had a right radical nephrectomy on 11/02/17.  My tumor was 9.8cm.  After the surgery i developed a pumonary emboli.  Patholgy confirmed it was Chromophobe RCC.  And I was classified as T2A N0 M0 grade 3 tumor.  I was not referred to oncologist but requested to meet with one for peace of mind.  It is difficult because there is little information on this sub type of RCC.  I am happy I found this fourm with others that have has similar experiences.  I am having a hard time with anxiety since my diagnosis.  I am trying to stay positive and live in the moment, but i am finding that very challenging some days.  I have a follow-up CT scan for the pulmonary emboli an Feb.  Initially my urologist wanted to wait 6 months for my first follow up scan but he agreed to do the first one at the same time at the chest CT so I dont have to have the contrast die 2x in 3 months.  

Hi Sarah.  I'm a little bit late to this thread as I just returned from a trip to Asia (that was great!).  I'm a Chromie as well, but my lesion was a little guy, measuring only about 1.7cm.  I was diagnosed in December, 2013 with the lesion, but since it was so small, the urologic oncologist I had said the standard of care was wait and monitor.  We did that with six month scans and in April of 2016, an ultrasound indicated the little guy had grown a tiny bit, so he suggested having it taken out.  I did that with a robotic assisted partial in June of 2016 and I've had two NED X-Rays/CT's since then and am now on an annual X-Ray/CT schedule.  I'm not bothered by the annual CT as I've had some pretty severe abdmoninal issues over the years and CT gets a peek at that area as well as my aorta, an area that has had some pretty bad episodes for my paternal grandfather and my dad.  So getting those areas checked regularly gives me a little peace of mind.

Both the urologist and the surgeon who sliced and diced me told me that chromophobe RCC rarely spreads, rarely returns, and grows very, very slowly.  In my case, I was told the chances of mets and the chance of recurrence were almost zero ; almost, but not quite, so the thought still crosses my mind from time to time, which is why I don't mind at all going through the hassle of the scans and x-rays.

So, the anxiety will always be with you.  It will diminish over time as you rack up some scans that show no evidence of disease, but I would be less than honest if I told you that you'll one day lose all anxiety about it.  With the abdominal issues I've experienced, I had to go through two major abdominal operations and two "minor" ones and I had to wear an ostomy bag for three months while my intestines healed from one incident.  So every time I get a stomach ache, the first thing that crosses me mind is "Oh no, not again".  So, be vigilant, but try to make sure you live your life and enjoy your family and friends as well.

Mizzou fan , Im glad you are doing well.  You had a rough way . Im very glad you have been ned for last two years.My tumor was also large but not as large as yours.