Chromophobe RCC

klj15
klj15 Member Posts: 38

This is my first post, although I have gained a lot of useful info from everyone else's posts over the past few months. I have my 2nd scan (6 months post-op) scheduled for next Monday. My first scan was clear, and for that I am very thankful. I pray the same will be true with the next one.

My question is this - does anyone else have experience with Chromophobe Renal Cell Carcinoma?

My tumor was found on 03/17/17 in the ER when they were scanning my lungs to see if I had a PE. The tumor was the size of a football, so the top could be seen on the chest CT. My entire left kidney and tumor were removed on 03/21/17 (it measured 17.0cm x 10.4cm x 18.9cm). The path report came back Stage pT3a with the Chromophobe RCC type. My doctor told me that Chromophobe RCC has a very low recurrence rate.

I had 2 follow up visits - 1 to have my staples removed, and 1 after my first scans. Oncology refused to see me because I did not have any mets. I follow up with the new/replacement Urologist in September. I'm not sure if I'm just lucky that I don't need more intensive follow up, or if something is missing. Any input from folks with the same diagnosis would be welcomed.

Thank you!

«134

Comments

  • stub1969
    stub1969 Member Posts: 959 Member
    Welcome klj15

    Good to hear from a fellow Chromie!  Click on my "name" to read about my cancer and journey. 

    For the most part, I would agree with your doctor about the low recurrence rate, but our type of cancer certainly can metastasize, especially when the tumor is large or has rhabdoid features.  I don't mean to scare you, but this is our reality.  We need to be vigilent in our scans.  If our cancer returns, we want to catch it early.

    Good luck with your scans on Monday.  I'll pray that Uncle NED visits you again.

    Stub

  • klj15
    klj15 Member Posts: 38
    stub1969 said:

    Welcome klj15

    Good to hear from a fellow Chromie!  Click on my "name" to read about my cancer and journey. 

    For the most part, I would agree with your doctor about the low recurrence rate, but our type of cancer certainly can metastasize, especially when the tumor is large or has rhabdoid features.  I don't mean to scare you, but this is our reality.  We need to be vigilent in our scans.  If our cancer returns, we want to catch it early.

    Good luck with your scans on Monday.  I'll pray that Uncle NED visits you again.

    Stub

    Thank you so much!

    Thank you so much!

  • sblairc
    sblairc Member Posts: 585 Member
    Check my "name" too for my husband (also Stage T3a) chromophobe

    Ditto what Stubs says. Best to you!!

  • Bay Area Guy
    Bay Area Guy Member Posts: 581 Member
    edited August 2017 #5
    I had a 1.7cm lesion on my

    I had a 1.7cm lesion on my right kidney that was determined to be chromophone RCC after a robotic partial in June, 2016.  Obviously, my lesion was nowhere near your size, but my surgeon told me that chromophobe rarely returns and rarely spreads.  The key word there is rarely.  In the year since my surgery, I've had two scan/chest x-ray sessions, both of which were clean and the surgeon has put me on an annual scan/X-ray schedule now.  Again, with the size of your tumor, I don't know if the prognosis changes or not.

    Here's hoping your scans on Monday are completing clean.

  • I am alive
    I am alive Member Posts: 315
    Fellow Chromophobe with metastasis

    I had an 11 cm tumor 13 years ago, fully encapsulated with some necrosis. First met appeared almost four years post nephrectomy, so I am here to tell you to STAY VIGILANT and keep getting tested at least twice yearly the first five years. But since yours was so big, klj, I would insist on testing three times a year - every four months - for the first two years at least. So yes, chromophobe does recur. The good news is it is usually - though not always - slow growing. I have been stage 4 for 9 years. Not a walk in the park, but I enjoy my life and feel very lucky. Since becoming stage 4 I've had four surgeries, radiation, spent 22 months in a clinical trial which kept me stable but I developed heart failure and Lymphedema from the drugs. The heart failure reverted to low normal after getting off the drugs, but the Lymphedema lingers, though improved. I have been drug free for almost 3.5 years while we "watched & waited" as slow incremental growth ensued - but also a kind of wave of slight increase followed by slight decrease that kept me technically "stable," if you define the word loosely. Have been told it is time to start another systemic treatment since the cancer is marching forward. "It's not a four-alarm fire. Not even a one-alarm fire," the onc said. So it goes. I hope he's right!

     But let me also add this: the best test is a CT with contrast of the abdomen, chest & pelvis. I'm not sure if they give you that if you are not metastatic, but I would ask the doc for the CT and see what he/she says.

     

    i don't mean to scare you, but this "doesn't usually reoccur" thing is a mythology that doctors with less chromophobe experience cavalierly tell their patients. Just stay vigilant. You'll be good. 

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    edited October 2017 #7
    I have joined you

    I also found out I am Chromophobe last week

    mass was 4.4  and I was told all contained but I don’t get the full pathology report  and follow up for another three weeks

    My surgeon sounded postitive but the scary thing is the lack of information and data on this rare cancer

    Unless  there is a worldwide central database  which we could access it is impossible to make any strong predictions on such small numbers

    It is very worrying to not have had a follow up oncology plan for masses of sizes mentioned above

     

    I am heartened by your stories and send best wishes to you all 

    I am alive   You sound as if you are one strong lady  I pray and hope you continue on your slightly bumpy road

     

    Annie

     

  • klj15
    klj15 Member Posts: 38
    Thank you!

    Thank you all for responding. It is helpful to me to read your stories, and learn of your experiences. My 2nd scans were clear, so that was great news. My new urologist is concerned about some spots on my liver that may just be cysts. I was referred by him to an Oncologist for consult, so that is also comforting. The most important lesson I've learned to be way more proactive in my care. I have done more research in the past 7 months than I've done in all my years of schooling. If I don't advocate for myself and my health, no one else will (besides my great husband, of course).

     

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    edited October 2017 #9
    Great Great News

    From one Chromie to another

     

    Have these spots Just appeared since last scan.  They must be very small but slightly worrying nevertheless 

     

    How quickly do you think you will see the Oncologist

     

    Annie

     

     

  • Kidneylady
    Kidneylady Member Posts: 1
    New diagnosis

    Hi everyone. My 45 year old husband was diagnosed with a 12 cm kidney tumor on a CT done to look for a kidney stone on the other side.  He had a radical nephrectomy last month and was diagnosed with stage 3A chromophobe RCC. There was some vascular invasion, lymph nodes negative.  His follow up is going to be CT scans every 3 months for now.  Wish us luck! 

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    Kidneylady

    Sorry to hear about your husband. Glad all has been takin care of. I wish you and him all the best in the future!!

  • klj15
    klj15 Member Posts: 38

    Great Great News

    From one Chromie to another

     

    Have these spots Just appeared since last scan.  They must be very small but slightly worrying nevertheless 

     

    How quickly do you think you will see the Oncologist

     

    Annie

     

     

    The spots on my liver are

    The spots on my liver are very small, and have been consistent in size and number since my first scan post-op. Two of my doctors think they are just cysts. I am going for a second Oncology opinion to be more certain. I saw one Oncologist a week ago, he just wanted to lecture me on why I don't need to see an Oncologist. I see the Oncologist I actually want to see at the end of this month.

     

  • klj15
    klj15 Member Posts: 38

    New diagnosis

    Hi everyone. My 45 year old husband was diagnosed with a 12 cm kidney tumor on a CT done to look for a kidney stone on the other side.  He had a radical nephrectomy last month and was diagnosed with stage 3A chromophobe RCC. There was some vascular invasion, lymph nodes negative.  His follow up is going to be CT scans every 3 months for now.  Wish us luck! 

    Good luck to your husband! I

    Good luck to your husband! I hope all is well with his recovery and future scans. It took me much longer than I anticipated to recover from my radical nephrectomy. I have an 8" incision across my abdomen to my midline. I still have problems with certain movements that use the upper abdominal muscles, but generally do pretty good now.

  • dannyboy1969
    dannyboy1969 Member Posts: 20
    edited November 2017 #14
    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. 

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member

    New diagnosis

    Hi everyone. My 45 year old husband was diagnosed with a 12 cm kidney tumor on a CT done to look for a kidney stone on the other side.  He had a radical nephrectomy last month and was diagnosed with stage 3A chromophobe RCC. There was some vascular invasion, lymph nodes negative.  His follow up is going to be CT scans every 3 months for now.  Wish us luck! 

    Praying for you both

    You are on a tough road but  good signs so I pray that you stay on the good side

     

     there are a few people on here with similar sized tumours and clear after 3 to 4 years

     

    please keep us updated and best of luck

    Annie

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    edited November 2017 #16
    Hi Danny

     I am so sorry for what your dear wife  and you are going through

    Can I ask what size the tumours were

    Annie

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    edited November 2017 #17
    dannyboy1969

    I hope she is healing well. Sorry you two are going through this.

  • stub1969
    stub1969 Member Posts: 959 Member
    Danny

    Hi, Danny.  I too am a Chromie and had surgery a year ago at Mayo in Rochester.  Dr. Chow was the surgeon.  Can you look at her pathology report and give us some more information.    The added information will help us give you feedback.   FYI--Medic1971 is another member here that had two tumors (both small) and his were Chromophobe RCC.

    Take care--

    Stub

  • dannyboy1969
    dannyboy1969 Member Posts: 20

    Hi Danny

     I am so sorry for what your dear wife  and you are going through

    Can I ask what size the tumours were

    Annie

    Chromophobe RCC

    Thanks for the response.  There were 2 masses on her left kidney.  Tumors were located on teh middle and lower poles.  The largest tumor was 4.1x2.7x2.6cm and the smaller was .8x.7x.6cm.  Histologic Type:  Chromophobe RCC.  Histologic Grade: Grade 3.  Number of lymph nodes examined:  9.  Number of lymph nodes involved:  3.  TNM Descriptors:  Primary Tumor pT3a, Regional lymph nodes:  pN1.

    I'm so glad I found this site.  I'm still drinking through a fire hose trying to learn all I can.  Any help would be greatly appreciated.

  • dannyboy1969
    dannyboy1969 Member Posts: 20
    stub1969 said:

    Danny

    Hi, Danny.  I too am a Chromie and had surgery a year ago at Mayo in Rochester.  Dr. Chow was the surgeon.  Can you look at her pathology report and give us some more information.    The added information will help us give you feedback.   FYI--Medic1971 is another member here that had two tumors (both small) and his were Chromophobe RCC.

    Take care--

    Stub

    Chromophobe RCC

    Thanks Stub.  So glad I found this site.  I met with Dr. Chow last week and he referred us to Dr. Thompson.  Those doctors at Mayo are the best. I left some info with Medic1971.

  • dannyboy1969
    dannyboy1969 Member Posts: 20
    AnnissaP said:

    dannyboy1969

    I hope she is healing well. Sorry you two are going through this.

    Chromophobe RCC

    Thanks so much for the note.  I'm still trying to process this and it is nice to know I have some people to lean on for info.  So glad I found this site.