Post Full Left Nephrectomy for Chromophobe RCC on 10/21 - doing fine, but fear Recurrence

vfelty
vfelty Member Posts: 21
in Kidney Cancer #1

Hello all!
I am 39 and had a rare form of RCC, Chromophobe RCC, Stage 1 in my Left Kidney, and had a full nephrectomy on 10/21.  I am doing great, feeling great, and even back to work this week! I know it does NO good to worry about things yet to be, but I have read SO many stories about recurrence after 2, 3, even 7 years.  It is scary!! I am going to see an oncologist for the first time on Tuesday, and hopefully he can help me feel more assured that they will do their best to scan my lungs, bones, brain, etc. to watch out for any recurrence.  I also want to have genetic testing for Von Hippel Lindau and/or Birt Hogg Dube.  I meet some of the criteria from what I have read about them, and so if anyone out there can reply and let me know 1) how are you coping with fear of recurrence; and 2) do you know anything about genetic testing, I would love to hear from you.  Thank you for your support! I am happy I am now a bonafide member of this group now that I have had the surgery, haha! :)

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Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    Welcome

    v,

     

    I see from this and your other post you got thru the initiation with flying colors. Try not to worry about recurrance. You have a good prognosis. In a little over 30 years you will be my age and you will appreciate those younger years even more.

     

    Icemantoo

     

  • Djinnie
    Djinnie Member Posts: 945 Member
    #3
    Hi Vfelty, 
    I am so glad to

    Hi Vfelty, 

    I am so glad to hear you have made such a speedy recovery, that is great news! I don't know anything about genetic testing, although both my parents had cancer, we each had a different type. I do know something about reocurrence though. I first had kidney cancer in 2003 and my second occurrence was discovered early this year. I had a partial nephrectomy this time, the first time I had ablation, the tumour was found on the old site.

    Initially there is bound to be a fear of reoccurrence, but as time goes on you will become a little more confident. I honestly haven't spent the last ten years worrying myself crazy, the constant stress would have created a self fulfilling prophecy. There is always concern when the scan appointments come into view, but the rest of the time there really is no point dwelling on something that may never actually happen. I have learnt from experience there is no hard and fast rule when it comes to this disease, all we can do is take the necessary steps to try to negate a reocurrence, and keep a positive attitude.

    All the best with you appointment on Tuesday, I am sure you will feel much easier after speaking to your oncologist:)

    Djinnie

  • grnsammy09
    grnsammy09 Member Posts: 20
    #4
    Genetic Testing

    I have an appt with a geneticist on January 6th to be tested for the syndromes you mentioned and a few others. Pretty sure they are just blood tests. I had Stage 2 ChRCC at 29 years old (Had it for about 3 years before it was discovered and removed 2 months ago) so they are trying to figure out why it presented itself in me. I wish my appt was sooner but as soon as I go through it I will post about my experience! Good luck!

  • gingersnaps
    gingersnaps Member Posts: 67 Member
    #5
    hi v

    You can read for hours on this forum about chromophobe. I have been doing it for a over a year since my 35 yr old son had robotic surgery at Cleveland clinic for a 3.8 chromophobe.stage t1a grade 3. It will be 2years in August. He has his scans at Cleveland that are now a year apart. He recovered within 3 weeks and was back to work. In hospital 2 nights and took care of himself when he got home,his wife had to work. Some say if you have to have kidney cancer,chromophobe is the least aggressive.    What size was yours and grade?  If you read down I was a little worried about his shoulder pain but all was good. My life was changed the day he got the bad news ,I am only the mother. The doctor told him to never miss a scan and if it did recurr it would probably be in the kidney. Recurrence is unlikely.  Prayers for all with this rare disease. I'm glad to hear of your fast recovery,I think age has something to do with it.

  • foxhd
    foxhd Member Posts: 3,181 Member
    #6
    gingersnaps said:

    hi v

    You can read for hours on this forum about chromophobe. I have been doing it for a over a year since my 35 yr old son had robotic surgery at Cleveland clinic for a 3.8 chromophobe.stage t1a grade 3. It will be 2years in August. He has his scans at Cleveland that are now a year apart. He recovered within 3 weeks and was back to work. In hospital 2 nights and took care of himself when he got home,his wife had to work. Some say if you have to have kidney cancer,chromophobe is the least aggressive.    What size was yours and grade?  If you read down I was a little worried about his shoulder pain but all was good. My life was changed the day he got the bad news ,I am only the mother. The doctor told him to never miss a scan and if it did recurr it would probably be in the kidney. Recurrence is unlikely.  Prayers for all with this rare disease. I'm glad to hear of your fast recovery,I think age has something to do with it.

    We all fear reoccurance

    Don't let it be the anchor that sinks your ship. Know that you have dodged  a bullet. Smile, love, and live on!!!! Just stay up to date with all your appointments.

  • angec
    angec Member Posts: 924 Member
    #7
    I think one of our members

    I think one of our members might know more about this.. RON?

  • vfelty
    vfelty Member Posts: 21
    #8
    icemantoo said:

    Welcome

    v,

     

    I see from this and your other post you got thru the initiation with flying colors. Try not to worry about recurrance. You have a good prognosis. In a little over 30 years you will be my age and you will appreciate those younger years even more.

     

    Icemantoo

     

    Thank you, Icemantoo

    Thank you for your positive reply! I will try to not worry, but sometimes I do.  Thank you! :)

  • vfelty
    vfelty Member Posts: 21
    #9
    gingersnaps said:

    hi v

    You can read for hours on this forum about chromophobe. I have been doing it for a over a year since my 35 yr old son had robotic surgery at Cleveland clinic for a 3.8 chromophobe.stage t1a grade 3. It will be 2years in August. He has his scans at Cleveland that are now a year apart. He recovered within 3 weeks and was back to work. In hospital 2 nights and took care of himself when he got home,his wife had to work. Some say if you have to have kidney cancer,chromophobe is the least aggressive.    What size was yours and grade?  If you read down I was a little worried about his shoulder pain but all was good. My life was changed the day he got the bad news ,I am only the mother. The doctor told him to never miss a scan and if it did recurr it would probably be in the kidney. Recurrence is unlikely.  Prayers for all with this rare disease. I'm glad to hear of your fast recovery,I think age has something to do with it.

    Thanks for your reply:)

    That is a great story because it sounds like mine with the quick recovery time, except my husband took a week off to stay with me.  By week 2 I was feeling good, and by week 3 feeling closer to normal again. :)   I knew I was Stage 1 because of the size of the tumor and when I asked my urologist what "grade" it was, he just replied, Stage 1.  So I don't know my grade.  I see an oncologist for the first time on Tuesday at the University of Arizona Cancer Center.  I hope to learn more at that time.  I know my urologist is smart, but I worry that he is not a specialist in the places that I have read Chromophobe RCC likes to recur:  the brain, bones, and lungs.   I am happy that your son is doing well!! That is encouraging to read.  I did read there is a 20% - 40% chance of recurrence for RCC.  But I try to flip it and state, there is a 60 - 80% chance it "won't" recur. I hope because I am relatively young, that it will not come back. Let's hope!!:)

     

  • vfelty
    vfelty Member Posts: 21
    #10
    foxhd said:

    We all fear reoccurance

    Don't let it be the anchor that sinks your ship. Know that you have dodged  a bullet. Smile, love, and live on!!!! Just stay up to date with all your appointments.

    Thank you, Foxhd!

    That is great advice, thank you.  I will do my best to adhere! I am a pretty optimistic person, anyways, and will keep up with every appt. :)  

  • vfelty
    vfelty Member Posts: 21
    #11
    Djinnie said:

    Hi Vfelty, 
    I am so glad to

    Hi Vfelty, 

    I am so glad to hear you have made such a speedy recovery, that is great news! I don't know anything about genetic testing, although both my parents had cancer, we each had a different type. I do know something about reocurrence though. I first had kidney cancer in 2003 and my second occurrence was discovered early this year. I had a partial nephrectomy this time, the first time I had ablation, the tumour was found on the old site.

    Initially there is bound to be a fear of reoccurrence, but as time goes on you will become a little more confident. I honestly haven't spent the last ten years worrying myself crazy, the constant stress would have created a self fulfilling prophecy. There is always concern when the scan appointments come into view, but the rest of the time there really is no point dwelling on something that may never actually happen. I have learnt from experience there is no hard and fast rule when it comes to this disease, all we can do is take the necessary steps to try to negate a reocurrence, and keep a positive attitude.

    All the best with you appointment on Tuesday, I am sure you will feel much easier after speaking to your oncologist:)

    Djinnie

    Thank you, Djinnie

    Thanks for your well wishes and your good advice.  I thought if you made it to 10 years clear/free that you were out of the woods, but I guess not.  However, I will just try to focus on feeling good and energized each day, grateful just to be here and on top of things should it ever recur.  

  • vfelty
    vfelty Member Posts: 21
    #12
    grnsammy09 said:

    Genetic Testing

    I have an appt with a geneticist on January 6th to be tested for the syndromes you mentioned and a few others. Pretty sure they are just blood tests. I had Stage 2 ChRCC at 29 years old (Had it for about 3 years before it was discovered and removed 2 months ago) so they are trying to figure out why it presented itself in me. I wish my appt was sooner but as soon as I go through it I will post about my experience! Good luck!

    Genetic Testing

    Congrats on being 2 months out from your nephrectomy! Did your urologist or oncologist order the genetic testing?  I asked my urologist about this the day after my nephrectomy and he said they could do the Von Hippel Lindau test (blood test) but that (his practice) didn't do the other genetic testing for Birt Hogg Dube.  He made it seem like no one had ever asked for that, ever! I called his office last week to learn the results of the test and his medical asst. told me that all she could see was that there was a miscellaneous blood test done and she had no results.  I asked her to ask the dr. to call me and a whole week went by, argh! I guess to know anything I have to make an appt. and will do that on Monday, but meantime I am hoping the oncologist will be more knowledgable and wanting to know why my ChRCC decided to present itself in me at a relatively young age too (okay, I am 10 years older than you, but still younger than the average person who gets it, which I was told/have read is in their late 40's/early 50's).   So, good luck on your test results too and please share back what you find out! :) 

  • I am alive
    I am alive Member Posts: 315
    #13
    angec said:

    I think one of our members

    I think one of our members might know more about this.. RON?

    The yellow brick road

    We all find our way to cope. I actually spent my first seven years post nephrectomy NOT READING MUCH OF ANYTHING ABOUT RCC!! I wanted to keep dancing in the sunlight - my exact phrase at the time. And what's remarkable about this, in retrospect, is that at five years post op I had a recurrence & surgery and yet I didn't consider myself metastatic or stage IV. I just figured "Yay!!! I'm cancer free again!"  and continued my dance in the sunlight. Ignorance being bliss, I guess. It was only at year eight when the second, third and fourth recurrences showed themselves in quick sucsession that I began to "own" my chromophobe. That's when I logged on here and began educating myself big time. My point being that we all take a different path to this place and whatever floats your boat floats your boat. You learn to deal with the uncertainty, and you realize that as the days go by you feel pretty darn good and life goes on and you don't want to give cancer a minute more than you absolutely have to. So you don't. And don't think that your chromophobe will be in anyway similar to mine. All our cancers are different and unique to us. That's something you learn here pretty quickly. Yea, it's scary stuff. But you're tough. Once you process your new reality - be gentle with yourself, that can take years, look at me! - you'll be surprised at how dispassionate you can be about it. Live long & prosper, my fellow chromie!

  • vfelty
    vfelty Member Posts: 21
    #14
    I am alive said:

    The yellow brick road

    We all find our way to cope. I actually spent my first seven years post nephrectomy NOT READING MUCH OF ANYTHING ABOUT RCC!! I wanted to keep dancing in the sunlight - my exact phrase at the time. And what's remarkable about this, in retrospect, is that at five years post op I had a recurrence & surgery and yet I didn't consider myself metastatic or stage IV. I just figured "Yay!!! I'm cancer free again!"  and continued my dance in the sunlight. Ignorance being bliss, I guess. It was only at year eight when the second, third and fourth recurrences showed themselves in quick sucsession that I began to "own" my chromophobe. That's when I logged on here and began educating myself big time. My point being that we all take a different path to this place and whatever floats your boat floats your boat. You learn to deal with the uncertainty, and you realize that as the days go by you feel pretty darn good and life goes on and you don't want to give cancer a minute more than you absolutely have to. So you don't. And don't think that your chromophobe will be in anyway similar to mine. All our cancers are different and unique to us. That's something you learn here pretty quickly. Yea, it's scary stuff. But you're tough. Once you process your new reality - be gentle with yourself, that can take years, look at me! - you'll be surprised at how dispassionate you can be about it. Live long & prosper, my fellow chromie!

    Thank you, I am alive

    I like everything you wrote.  Made me feel better! Though, I am sorry to hear it keeps coming back to you.  I hope to live long and prosper like you! :):)  Thank you!! 

  • gingersnaps
    gingersnaps Member Posts: 67 Member
    #15
    vfelty said:

    Thanks for your reply:)

    That is a great story because it sounds like mine with the quick recovery time, except my husband took a week off to stay with me.  By week 2 I was feeling good, and by week 3 feeling closer to normal again. :)   I knew I was Stage 1 because of the size of the tumor and when I asked my urologist what "grade" it was, he just replied, Stage 1.  So I don't know my grade.  I see an oncologist for the first time on Tuesday at the University of Arizona Cancer Center.  I hope to learn more at that time.  I know my urologist is smart, but I worry that he is not a specialist in the places that I have read Chromophobe RCC likes to recur:  the brain, bones, and lungs.   I am happy that your son is doing well!! That is encouraging to read.  I did read there is a 20% - 40% chance of recurrence for RCC.  But I try to flip it and state, there is a 60 - 80% chance it "won't" recur. I hope because I am relatively young, that it will not come back. Let's hope!!:)

     

    chromophobe

    I don't think the recurrence rates are that high for stage1 chromophobe. I don't know about other subtypes. Maybe it's different if the words scarcomatoid or necrosis are in the path report. 

     

      

  • gingersnaps
    gingersnaps Member Posts: 67 Member
    #16
    vfelty said:

    Thank you, I am alive

    I like everything you wrote.  Made me feel better! Though, I am sorry to hear it keeps coming back to you.  I hope to live long and prosper like you! :):)  Thank you!! 

    i am alive

    what was your stage at diagnosis? I can't find it in the archives.

  • I am alive
    I am alive Member Posts: 315
    #17
    gingersnaps said:

    i am alive

    what was your stage at diagnosis? I can't find it in the archives.

    Stage 2 b/c of size - 11 cm tumor

    The tumor was fully encapsulated, though there was some necrosis noted.

  • gingersnaps
    gingersnaps Member Posts: 67 Member
    #18
    I am alive said:

    Stage 2 b/c of size - 11 cm tumor

    The tumor was fully encapsulated, though there was some necrosis noted.

    i am alive

    I'm sorry,stage1or 2. Are you in the US and where was your surgery?

  • I am alive
    I am alive Member Posts: 315
    #19
    gingersnaps said:

    i am alive

    I'm sorry,stage1or 2. Are you in the US and where was your surgery?

    U.S.

    I'm in the U.S. My nephrectomy was done at the Hospital of the University of Pennsylvania in Philadelphia. My surgery for recurrence and all followup - I'm currently in a clinical trial especially for non clear cell RCC - has been at Memorial Sloan Kettering in NYC.

  • HarleyMom117
    HarleyMom117 Member Posts: 27 Member
    #20
    Hi, V -- I'm Terri....

    I'm 46, and had an open radical nephrectomy of my left kidney on Oct. 2 -- stage 1B, grade 3, chromophobe.   I will be seeing my oncologist for the first time in January (around 3-months post-op).   And, honestly, I haven't given a lot of thought to my chance(s) of recurrence since my surgery -- in my mind, it's all over & done with, and I will go on to live a long and happy life (albeit with one kidney).  

    Your comments (and concerns) do give me pause -- that maybe I'm not taking this as seriously as I should?   Certainly, I want to be on top of things if I find myself experiencing a recurrence.  I'd like to hear more about the genetic testing, and why you have decided this is something you need to pursue (there is no real cancer history in my family except for my Dad's sister, who fought breast cancer on & off from age 30-something until she lost her battle in her 60's.  

    What I love most about this site is how much we can learn from each other.   I found this group 2 days before my surgery, and it was truly a Godsend.   I went from being terrified and completely unprepared to feeling knowledgable & prepared -- it was awesome.  :)

    I look forward to hearing more from you!


    Terri

  • vfelty
    vfelty Member Posts: 21
    #21
    HarleyMom117 said:

    Hi, V -- I'm Terri....

    I'm 46, and had an open radical nephrectomy of my left kidney on Oct. 2 -- stage 1B, grade 3, chromophobe.   I will be seeing my oncologist for the first time in January (around 3-months post-op).   And, honestly, I haven't given a lot of thought to my chance(s) of recurrence since my surgery -- in my mind, it's all over & done with, and I will go on to live a long and happy life (albeit with one kidney).  

    Your comments (and concerns) do give me pause -- that maybe I'm not taking this as seriously as I should?   Certainly, I want to be on top of things if I find myself experiencing a recurrence.  I'd like to hear more about the genetic testing, and why you have decided this is something you need to pursue (there is no real cancer history in my family except for my Dad's sister, who fought breast cancer on & off from age 30-something until she lost her battle in her 60's.  

    What I love most about this site is how much we can learn from each other.   I found this group 2 days before my surgery, and it was truly a Godsend.   I went from being terrified and completely unprepared to feeling knowledgable & prepared -- it was awesome.  :)

    I look forward to hearing more from you!


    Terri

    Hi Terri :-)

    I am back at work and also am a part-time real estate agent, and I have been so busy this week I haven't had time to log on here until now.  I am glad you are donig okay! I saw an oncologist today because I scheduled it in Sept. right after my Nephrectomy was scheduled.  I put a post up just now that discloses I have opted against genetic testing.  It turns out there is a webiste http://nomograms.mskcc.org/ that the oncologist shared with me where one can enter their variables, and get a recurrence result.  Mine was 0 - 2% chance of recurrence!! I am on cloud 9.  I think with Stage 1, like you, I wasn't in any pain and it was found on accident, therefore I thought...no biggie.  Then after the surgery, I had this strange fear about recurrence that would not leave me until today.  Going to the oncologist for a consult was the best thing for my peace of mind.  I had read that people with my subtype, Chromophobe RCC, should get genetically tested for Birt Hogg Dube syndrome.  If you don't have that subtype then it propbably wouldn't make sense.  In my post just now, I wrote all the reasons why I decided against pursuing the genetic testing.  I say focus on feeling good now and each day and that's all you can do!! Visitng with an oncologist was a good thing because I needed to know an oncologist's opinion.  Not that I didn't trust my urologist, who performed the nephrectomy, but I just needed to make sure I had all my bases covered, and now they are! We will both go on to live a long and healthy life with our one kidney, and I feel GREAT physically and mentally now that I have made it past the surgery and have resumed my normal life activities. :)  I was already eating healthy before but now I have become super strict about no red  meat and 2 liters of water a day combined with walking 2+ miles per day.  So far so good! I love this forum because, like you stated, I have learned so much.  I feel like now I need to pay it forward and post things that may be helpful to someone who is pre-nephrectomy and hopefully put them at ease and let them know, everything will be alright!!!:)  Stay positive and no need to worry about recurrence.  It is a waste of time.  Just focus on feeling good each day and don't miss your 6 month scans, and we will both be fine! :) 

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