Chromophobe RCC

13

Comments

  • MizzouFan
    MizzouFan Member Posts: 10
    edited November 2017 #42

    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. 

    Chromophobe

    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
    dannyboy1969 Member Posts: 20 Member
    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.

  • AnnissaP
    AnnissaP Member Posts: 632 Member

    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

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

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    Great to hear Danny

    praying you have a nice Christmas and she gets the star treatment from Hubby

    Annie

  • en8236
    en8236 Member Posts: 30 Member
    Lung metastasis?

    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.

  • SarahD1983
    SarahD1983 Member Posts: 8

    Nerve Pain??

    Thanks for the help everyone.  It has certainly been appreciated.  My wife will be 2-weeks out from her surgery this Wednesday.  She is healing well and is off of her pain meds and getting around pretty well.  She has a nagging pain on her left side and seems to radiate down into her groin.  Could this be neuropathy?  Her surgery was pretty invasive and I'm sure some of her nerves are a little peeved about now.

    Hi Dannyboy.  I had a right

    Hi Dannyboy.  I had a right radiacl nephrectomy on 11/02.  I had horrble pain in my right groin for about 2 weeks post op.  I eventually went away.  Hope your wife is feeling better ;)

  • SarahD1983
    SarahD1983 Member Posts: 8
    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.  

  • dannyboy1969
    dannyboy1969 Member Posts: 20 Member

    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.  

    Welcome

    Thanks for the note Sarah.  Like you, I'm new to this Chromophobe realm and am so glad I found this site.  I find it very comforting to interact with people that are going through the same things we are.  I'm a bit of an outsider since I'm not the one with cancer, my wife has it.  But I'm doing my best to advocate for her by learning all I can about ChRCC.  You are correct, info is limited and this site helps me greatly.  There are plenty of people here that know far more than I do and their advice has had a calming effect on me.  All we can do is stay positive and live life between the scans.  I wish you well on  your journey.

  • jas75
    jas75 Member Posts: 11
    Another Chromophobe survivor

    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
    stub1969 Member Posts: 966 Member

    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

    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 

  • en8236
    en8236 Member Posts: 30 Member
    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

    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...

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member

    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

    Oh you have had a rough time  but you are on the other side

    I am also a chromie

    What advice did the Oncologist give you if you have been seen yet

    your little boy is beautiful... I sure hope that  the data says that we are unlikely to have recurrence 

    The data is so small  that we can only hope statistics are right on this

    I wish you all the best and hope  the lung problem is fixed

    Annie

     

  • stub1969
    stub1969 Member Posts: 966 Member
    edited December 2017 #54
    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

  • SarahD1983
    SarahD1983 Member Posts: 8
    edited December 2017 #55

    Hi Sarah

    Oh you have had a rough time  but you are on the other side

    I am also a chromie

    What advice did the Oncologist give you if you have been seen yet

    your little boy is beautiful... I sure hope that  the data says that we are unlikely to have recurrence 

    The data is so small  that we can only hope statistics are right on this

    I wish you all the best and hope  the lung problem is fixed

    Annie

     

    Hi Annie!

    thank you! My little one is my whole world and the reason i have to remain positive! the oncologist just kept saying i was a rare case. And there are little studies on chromophobe. He said there was no need for further treatment in my case because i didn’t show any risk factors. I have an appt at City of Hope to meet with a kidney cancer specialist to hopefully get some more insight or at least have them tell me they agree with the course of follow up as my current Dr.  i am praying statistics are right and this one and hoping there’s still a chance for us to use our embryos that lead me here... ❤️

  • jas75
    jas75 Member Posts: 11
    edited December 2017 #56
    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

    Thanks 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. 

  • stub1969
    stub1969 Member Posts: 966 Member
    That would

    be cool if they could do that.  I'd love to know when mine started.  I'm not sure what triggers those cells to go crazy--I believe there are environmental factors at play here. 

    Today all went well; everything came back clear.  I did find it interesting that the doctor I saw today talked about possible genetic testing for me.  With my age at diagnosis (47) and this rare varient, she through it may be a good idea.  At my next scan in May/June I'll get to visit with the surgeon and get his opinion on the topic.  Until then I'm going to live life and make memories.  Good luck to you Jas!  I'll be waiting for an update on your scans.

    Stub 

  • Bay Area Guy
    Bay Area Guy Member Posts: 618 Member

    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

    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.

  • MizzouFan
    MizzouFan Member Posts: 10
    New to the Chromophobe group

    August 2013 a 16 cm tumor was discovered on a CT scan, after I passed blood in urine. I was 45 year old male, with no symptoms prior to blood in urine. I have a thin build, the doctor looked for a visual sign of the tumor, he tried to feel for it. I remember him saying wow I can’t believe that I cannot detect a 30 kidney. RCC is really the silent killer.  They removed my right kidney, the finding was that distant metastasis was present, the tumor was mainly low grade Chromophobe, but a small portion was nuclear grade 4. They concluded that all known cancer was removed with clear margins. The diagnosis at the time was Stage four RCC, distant metastasi, no lymph node envolvement, without Sarcomatoid features. I was refeferred to an cancer doc. My first 3 month scan revealed cancer in my lymph nodes. The doctor wanted to try targeted therapy, I declined on the grounds that it would jeopardize my chances of survery. They kept me on three month scans, the cancer doc grew increasingly frustrated with my refusal of his plan of treatment. Two years past the three lymph nodes grew steadily. No other signs of cancer, showed up. I told the doc it was time for surgery, he chewed me out, called an internet doctor, told me good luck finding a surgeon that would go after a cancerous lymph node wedged between my remaining renal vein and inferior vena cava. He was right, I was turned down by three surgeons. I was very frustrated and losing hope, then I found an angel that made a 2012 post on CSN, the post led me to Doctor Richard S. Foster, Indiana University. I fedexed all my medical records to his great assistant, I saw the email from FedEx that Dr. Fosters office had received it. 30 minutes later, my phone rang it was an angel with a deep southern accent saying how does April,the 12th work for you, I said that will be great. I had a very successful RPLND surgery, which revealed that the cancer was contained to the three lymph nodes, the good news was still no sarcomatoid, bad news I had reached nuclear grade 4 again. Its been been over 2 years with clean scans! 

  • rdoyd2
    rdoyd2 Member Posts: 80 Member
    Mizzou fan , Im glad you are

    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.

     

     

  • Kidneybeans
    Kidneybeans Member Posts: 39
    I had a partial robotic on 10

    I had a partial robotic on 10/12/17 to remove my walnut (4.4 cm tumor) My sister named it Felipe. Apologies to anyone with that name. I find  humor to be a big help with stress and anxiety.  Naturally, as everyone here has, I've been reading everything I can find about chromophobe rcc. Two things that I have read recently (I check the dates on the studies and articles I read because the research does change now and then) seem to contradict people's experiences here and 1 contradicts my own as well.  One thing I have read repeatedly is that chrcc doesn't respond to treatments other than surgery. Thats obviously not  true based on the experiences of people here. Thank God I say to that. The other thing has to do with the Furhman grading of tumors. I have read several studies and have been told by other people with this type of cancer(as well as the papillary if I recall)  that they don't grade it because the cells look so completely different. Yet, my pathology report says Furhman grade 4. (My pathology was stage 1).  I was treated at MD Anderson Cancer Center, in NJ. They're not exactly idiots over there. I'm not very happy with my grade 4. 

    One last thing I'm curious about. My surgeon told me my tumor was really hard. He said he couldn't cut with a surgical knife.He said he's never seen that before but he said that all that mattered was it was stage 1 the margins were clear and he see me in March 2018. Has anyone else had a similar experience. The pathology report said only partial calcification.