6 years free and its come back

cboone75
cboone75 Member Posts: 43

Not sure how many are still on here since I was on last, but I had a 21 cm tumor on my Right Kidney.  Luckily it was encapsulated and didn't spread.  Well, wouldn't you know, it's come back on my left adrenal gland and in my lungs!  I have an appointment with an oncologist on the 19th of September at Dana Farber and a second opinion on 10/1 at Mass General.  

Anyone have this situation before and should I prepare myself for the worst?  I've maintained excellent health, work out almost daily and eat a generally good diet and am only 42 years old.  Hoping for the best, but with my family history, it does scare me a bit as both my grandparents passed from cancer at roughly 60 years of age and my dad passed a couple years ago at the age of 60 from cancer.  Always figured I had until then...but maybe not?  

Thanks,

Chris

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Comments

  • stub1969
    stub1969 Member Posts: 959 Member
    21 cm??

    That was a big tumor.  Sorry for the new developments, Chris.  I was wondering with your age and the size of your tumor, did you have any genetic testing?  

    Wishing you the best,

    Stub

  • cboone75
    cboone75 Member Posts: 43
    stub1969 said:

    21 cm??

    That was a big tumor.  Sorry for the new developments, Chris.  I was wondering with your age and the size of your tumor, did you have any genetic testing?  

    Wishing you the best,

    Stub

    It was the size of a football

    It was the size of a football...I only noticed I had it because it got so big I could feel it when I was laying on my back.  It would push through my abdomin.  Besides that, there was nothing that would have made me think I had cancer.  A little different this time as I have a presistant cough and my left side aches.  No, I never did have any genetic testing done.  

  • Hd67xlch
    Hd67xlch Member Posts: 151 Member
    edited September 2018 #4
    Happened to me......

    Read my profile for details but I went over 5 years NED after my kidney removal (4.5cm) before it came back in both lungs, I was able to have two lung surgeries to get it all out again. If my December 2018 scans come back clean that will be 2 years NED this time, good luck. 

  • cubsfan9
    cubsfan9 Member Posts: 69 Member
    Welcome back

    Good Morning, Chris!

    Yes, it can come back after several years!  It was 8 yrs from nephrectomy to discovery of large met on pancreas for my husband.  You are in good hands at Dana Farber and Mass General!  Is that where you had your surgery?  I think that with your age and family history it might be prudent to look into genetic testing.  NIH is where many patients go for testing. (National Institutes of Health, Bethesda, MD).  Talk about this when you go on Friday.

    There are many treatment options!!  My husband has been taking Sutent for about 5 1/2 years and is currently stable.  Challlenges ahead?  Absolutely!  But there is a great deal of hope!  Read some of the posts here and make a list of questions to take to your appointment.

  • JoeyZ
    JoeyZ Member Posts: 210 Member
    I'm not quite a year into

    I'm not quite a year into this game yet, so I'm no help. But I sure want to wish you luck and hope everything goes well for you. Don't write yourself off just yet, though. Hang tough and I'm sure there is help there for you. I am amazed and the different treatments and combinations of treatments that are helping so many people live a lot longer who ordinarily would not. I am trying to be one of these people! All the best to you, Chris.

  • JoeyZ
    JoeyZ Member Posts: 210 Member
    I'm not quite a year into

    Oops, my apologies for making a duplicate post...

  • CRashster
    CRashster Member Posts: 241 Member
    10cm

    mine was 10cm and not encapsulated. I could not imagine going through that at 42.

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    I can only imagine how you

    I can only imagine how you must be feeling to have a recurrence.  There is lots of hope and a number of different treatment options to carry you through the years ahead.  A number of people were diagnosed as Stage 4 and are still doing well.  My husband was diagnosed 6 1/2 years ago at stage 4.  Still doing well.  I wish you well.  Try to have good thoughts.  

  • rdoyd2
    rdoyd2 Member Posts: 80 Member
    Was your cancer clear cell or

    Was your cancer clear cell or chromophobe? Was necrosis or sarcomatoid factor present?

  • klj15
    klj15 Member Posts: 38
    rdoyd2 said:

    Was your cancer clear cell or

    Was your cancer clear cell or chromophobe? Was necrosis or sarcomatoid factor present?

    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. 

  • rdoyd2
    rdoyd2 Member Posts: 80 Member
    I thought my tumor was large

    I thought my tumor was large at 11.7 cm. I also had chromophobe. I see that unfortunatly these tumors can grow very large.

  • Manufred
    Manufred Member Posts: 241 Member
    Multiple options

    Chris,

    Tough call after so long!

    Treatment for mRCC has advanced in leaps and bounds over recent years, as you are no doubt aware if you have been following or reading the posts on this site.

    My own experience is outlined on my Profile Page - it may be relevant to you.

    Best Wishes, Fred

  • LeeAllen
    LeeAllen Member Posts: 40
    Chris I wanted to add this. 

    Chris I wanted to add this. 

     

    My Dad just died on Sept. 2nd of RCC. 65 years old. My Grandfather died of colon cancer at 68 in 1991. My grandmother died of lung cancer in 1997, however she smoked. I am 40. 

     

    When my Dad passed I emailed my Dad's onc and said "Well given my family history I'll be seeing you or one of your collegues in 20 years." 

     

    He said that there is no germ line  (genetically passed down) explanation for the cancers in my family and that most cancers develop due to somatic mutations (acquired mutations of the cells of the organ) and other than not smoking and few other preventative measures it appears bad luck random genetic events are causing most cancers.

     

    Also he goes on to say that he believes they are just several years away from much better long term treatment for folks. This was in reference to my Dad's stage 4 kidney cancer. Our oncologst founded the largest private research hospital in this country. 

     

    Hang in there. Gosh, that's such a generic thing to say. It's sucks but your treatment outlook appears to be very good. 

  • MizzouFan
    MizzouFan Member Posts: 10
    edited September 2018 #15
    Explore all options

    My advice to you is to fully explore surgery and drug therapy. It has been my experience that Urologist/Surgeons and Onocoligist offer two different perspectives. Many times the behavior of cancers in the past, is a road map in the future. Your tumor was 21 cm, and it took 6 years for it to metastasis, that is positive. Be careful and through in your decision making. Good luck!

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

    I know I should remember what type of cancer my original tumor was, but after 6 years, the only thing I remember was the size of the tumor (which I think I might win the prize for biggest!) and that they said it was stage II.  I'm going to be asking this wednesday when I have my appointment with the oncologist at Dana Farber.  I actually feel pretty good besides a small presistant cough and abdominal spasm that I keep getting.  A little pain in my side from time to time, but nothing to bad. Just curious to see what the plan will be once I meet with the doctors.  Waiting is the worst!

  • APny
    APny Member Posts: 1,995 Member
    Keeping your in my thoughts,

    Keeping your in my thoughts, Cboone. I'm sure the oncologist will have a good line of approach!

  • angec
    angec Member Posts: 924 Member
    cboone75 said:

    I know I should know this

    I know I should remember what type of cancer my original tumor was, but after 6 years, the only thing I remember was the size of the tumor (which I think I might win the prize for biggest!) and that they said it was stage II.  I'm going to be asking this wednesday when I have my appointment with the oncologist at Dana Farber.  I actually feel pretty good besides a small presistant cough and abdominal spasm that I keep getting.  A little pain in my side from time to time, but nothing to bad. Just curious to see what the plan will be once I meet with the doctors.  Waiting is the worst!

    You didn't give details on

    You didn't give details on how many Mets or size. Some were able to remove them or have them frozen. But they will definitely need to start you on meds. You did very well for 6 years and are young and strong. I know you will be fine.

    Make it a habit to get copies of all medical tests, and reports and keep a file. Very important!  Join smartpatients.com they have alot of  knowledge of treatments etc.  Praying for you! Hugs! Ps, my mom has done well since 2012 on low dose of Votrient. 

  • Deanie0916
    Deanie0916 Member Posts: 571 Member
    Hi sorry that it has recurred

    My tumor was 20 cm and I'm two years from surgery. I am sure you are going to have good treatment and do well. Prayers to you.

  • The same thing

    My was in right kidney, then 4 years later went to right Adrenal Gland.. So you will learn how to fight and fight you will do my friend...

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    Sorry to hear it is back. I

    Sorry to hear it is back. I hope it is early enough for them to take care of so you can move on with your life. All the best!