6 years free and its come back

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  • cboone75
    cboone75 Member Posts: 43
    #22
    I know I should know this

    Sorry I've been a little absent.  This stuff is crazy to hear and it's taken me a bit to wrap my head around it.  I have gone to two different docs now, one at Dana Farber and one at Mass General.  They basically told me the same thing, but Mass General doc was a little more positive about the potential outcome so that is the direction I"m going.  I did find out that my original tumor was clear cell RCC, they removed the 21 cm tumor and the adrenal gland with it.  The mets I have now aren't that big yet and have remained stable from my set of scans in early August to my second set in late September.  The tumor on my adrenal glan is about 2 cm and I have 1 slightly bigger in my right lung and another a little smaller in another area of my right lung with "mutliple" nodules only mm in size.  They did say that since my two sets of scans showed not changes, that along with my age and the shape I've kept myself in, all put me in a very good prognosis catagory.  I have another set of scans in November and then after that will probably start Opdivio.  Surgery is not an option with the location of my lung tumors not allowing for it.  While this diagnosis had me a little depressed for a few weeks, I'm now determined to keep on keeping on.  I want to be the most in shape stage 4 cancer patient they have!  I'm back in the gym after a 4 week layoff and heading up to New Hampshire this weekend to hike up another 4,000 footer.  I've done 23 out of the 48 and I'm determined to finish this list!    

  • duster10
    duster10 Member Posts: 29 Member
    #23
    cboone75 said:

    I know I should know this

    Sorry I've been a little absent.  This stuff is crazy to hear and it's taken me a bit to wrap my head around it.  I have gone to two different docs now, one at Dana Farber and one at Mass General.  They basically told me the same thing, but Mass General doc was a little more positive about the potential outcome so that is the direction I"m going.  I did find out that my original tumor was clear cell RCC, they removed the 21 cm tumor and the adrenal gland with it.  The mets I have now aren't that big yet and have remained stable from my set of scans in early August to my second set in late September.  The tumor on my adrenal glan is about 2 cm and I have 1 slightly bigger in my right lung and another a little smaller in another area of my right lung with "mutliple" nodules only mm in size.  They did say that since my two sets of scans showed not changes, that along with my age and the shape I've kept myself in, all put me in a very good prognosis catagory.  I have another set of scans in November and then after that will probably start Opdivio.  Surgery is not an option with the location of my lung tumors not allowing for it.  While this diagnosis had me a little depressed for a few weeks, I'm now determined to keep on keeping on.  I want to be the most in shape stage 4 cancer patient they have!  I'm back in the gym after a 4 week layoff and heading up to New Hampshire this weekend to hike up another 4,000 footer.  I've done 23 out of the 48 and I'm determined to finish this list!    

    Great attitude

    What a great attitude......way to be a stud about all of this!  Im 43, and just had my 2 year NED.  Had a big tumor also (10.5 cm...but yours was a beast!).  Frustrating that you went 6 years NED, but sounds like you caught it as early as possible.  You are an insporation for me to continue to try and work on my health and diet.  Keep us posted!  Will be thinking and praying for you!

  • cboone75
    cboone75 Member Posts: 43
    #24
    duster10 said:

    Great attitude

    What a great attitude......way to be a stud about all of this!  Im 43, and just had my 2 year NED.  Had a big tumor also (10.5 cm...but yours was a beast!).  Frustrating that you went 6 years NED, but sounds like you caught it as early as possible.  You are an insporation for me to continue to try and work on my health and diet.  Keep us posted!  Will be thinking and praying for you!

    Docs said

    One of the more important things I can do is to keep workign out, nothing crazy like maxing out, but I'm beyond all that now!  Just try and keep in as good of shape as possible.  Lifting is easier...cardio is more difficult with having lung tumors.  When I initially had my kidney taken out, it took me almost 2 years to get back in the swing of thing mentally and physically...my opperation to take out my kidney, due to the size of it, resulted in a deflated lung and a lot of my insides being moved around to get it out. I have a background in personal training and managing gyms so it's not only important from the doctors perspective, but my sanity as well!  Good to hear you are 2 years NED.  

  • LMCRJB13
    LMCRJB13 Member Posts: 84
    #25
    Thanks for sharing and for

    Thanks for sharing and for the inspiration - I had two surgeries last year to remove a mass on each kidney.  I am just now, close to a year later, attempting to get back into a fitness routine...man, it's not easy but I know I can do it.  Cardio is a beast.  

    I wish your much success in your next course of treatment.  Positive thoughts for you, brother.

    Ryan   

  • todd121
    todd121 Member Posts: 1,448 Member
    edited October 2018 #26
    klj15 said:

    Great question

    I was wondering the same thing. My tumor was large 17cm and was chromophobe. 21cm is huge! Because I am chRCC, low liklihood of recurrence, I fear that my doctors will loosely follow and release me at the 5 year mark and something new will appear.  Prayers that this episode will resolve itself quickly and without complications. 

    5 years mark

    I would love someone to chime in on this, but for RCC, I don't think there's a 5 year mark after which you are safe. This is taken from other cancers like breast cancer where the probability of recurrence drops to effectively 0 at 5 years.

    If anyone has different (scientific/studies) information, please chime in.

    I just don't want people to think they should stop surveillance after 5 years. I have several friends who have had it come back 10 years even 20 years out. You want to catch it early if you can while it's still operable when you have a chance to get back NED.

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member
    #27

    I'm curious how it was found. Was it on an annual CT scan or did you have symptoms? What kind of followups were you getting when it was discovered?

    I had Stage 3 Grade 3 6 years ago and lost my right kidney. Tumor was only 7cm, but it had invaded some of the small veins in the kidney. 2 years after I had it metastasize to the adrenal gland and had to have that removed.

    Will they remove your other adrenal gland? I had some symptoms when I had the tumor in my adrenal gland. They didn't say this, but I suspected it wasn't behaving properly with the tumor in there.

    Wishing you the best. I hope the opdivo works for you and I admire you keeping in shape as you have and also your good attitude. Those are gifts you can give yourself that I think will help you and your family out.

    You said you couldn't have surgery because of the location, but what about radiation? Some people have been using radiation on mets in the lungs with success.

    Best wishes to you. Please let us know how it's going.

    Todd

  • cboone75
    cboone75 Member Posts: 43
    #28
    HI Todd121, it was only found

    HI Todd121, it was only found because I had a sinus infection that turned into pnemonia.  They gave me meds but it didn't seem to help.  I went back to the doctors they said my lungs sounded fine, but they wanted to confirm with a chest x-ray.  That shoudl some abnormal spots...which then, due to my RCC history, they ordered a CT of the lungs and abdomin.  That more or less confirmed what was going on.  Then came the MRI and then the biopsy.   At this point, there are no plans to remove my only adrenal gland left.  I have asked them about it not performing correctly, but they said it shoudl be fine for now...not sure how long before it's not?  Also, no talk of radiation at this point either.  Should know more next month when I go back in for another set of scans.  

  • Bryn1108
    Bryn1108 Member Posts: 97 Member
    #29
    Praying hard for you my friend

    Taking care of our mind, body and soul are so important.  Praying hard for you! 

  • cboone75
    cboone75 Member Posts: 43
    #30
    Bryn1108 said:

    Praying hard for you my friend

    Taking care of our mind, body and soul are so important.  Praying hard for you! 

    Thank you.

    Thank you.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #31
    Hey Chris, I think you are

    Hey Chris, I think you are amazing~ Glad you can share your journey with us. Remember, WE WILL BE ALONG SIDE YOU, ALL THE WAY!

    You can FEEL whatever you need to feel. Do not let others talk you out of your feelings, as they are YOURS~and feelings are not good or bad, they just are our emotions!

    Glad you have an optimistic doc giving you the best direction on your path. I look forward to yourr reports and updates~

    Sending you a healing hugs and this prayer: 

    (God) Grant me the  SERNITY to accept the things I cannot change,

    the COURAGE to change the things I can and

    the WISDOM to know the difference~

     

    Healing hugs, 

    Jan

  • Limelife50
    Limelife50 Member Posts: 476
    #32
    I Remember

    I remember when you were first diagnosed.Sorry you are having to deal with this disease again.

  • APny
    APny Member Posts: 1,995 Member
    #33
    Your great physical shape due

    Your great physical shape due to working out and your age are huge factors in your favor. Not to mention your attitude. I'm sure your physicians have a good line of attack and that the Opdivo will kick the mets' butt. All the best to you!

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