Nephrectomy complete; waiting on next steps

tiger09
tiger09 Member Posts: 9
in Kidney Cancer #1

Hello everyone,

I am 29 years old and was diagnosed with Stage IV RCC in May after an ER visit discovered a 13 cm tumor. Had a radical nephrectomy in June - removed right kidney, right adrenal gland, some surrounding lymph nodes and part of my IVC. I am recovering pretty well from the neph and am having a CT, MRIs and a bone scan done to see what my next steps are. I have already connected over on Smart Patients as although my tumor appeared to be type II pRCC, there were strong indicators that it is HLRCC. As far as I know, there's no family history however.

Looking for support and guidance, along with fellowship. I'd like to think my time isn't up just yet; I've come too far to throw in the towel now. Hope you all have a pleasant rest of the week!

Comments

  • Dutch1
    Dutch1 Member Posts: 152
    #2
    You can hold on to your towel

    You can hold on to your towel for a while yet.  I share a lot of your situation.  I was quite a bit older when my Stage IV cancer was found.  I also had my right kidney, adrenal gland and a bunch of lymph nodes removed.  My tumor was around the same size as yours.  That was 3 and a half years ago.  Certainly, you and I share difficult circumstances.  Get yourself a good oncologist and have another oncologist selected for second opinions (as the need for a 2nd will likely become necessary at some pivotal point regarding treatment options).  What's been successful for me was participation in an Everolimus test trial starting 6 weeks after surgery.  My cancer showed up again about 18 months after surgery ... but not to an overwhelming degree.  I've been on two different drugs and have gone through radiation since then and I have been pretty much stable for the last 9 months.  Diet (my wife is great about reading anything she can find on foods which are thought to be a help as we deal with cancer) and remaining active are important, in our view.  So, life has taken a turn for us, but we're dealing with it so far.  

    Hang in there.  I'm sorry to see that you were so young to get hammered by this disease.  Keep in contact with this discussion board and use it to gain reassurance (we all have ups and downs) as time goes by.

    Best wishes,

    Dutch

  • moon_29
    moon_29 Member Posts: 6
    #3
    Hi Tiger09,

    Hi Tiger09,

    I am also papillary HLRCC, diagnosed 4 years ago. I am sooo sorry you had to come here for this. If you want to talk, please send me a private message. 

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    edited August 2016 #4
    Hi Tiger!

    Stage 4 Grade 4 here. Diagnosed in May 2013. Kidney and part of vein removed, mets still in lungs. I know when you get diagnosed it feels like a death sentence but it really isnt, especially with the latest discoveries in immunology. I really believe that Cancer is on the same road as AIDS, changing from a terminal to a chronic illness.

    Having said that, its still a serious disease and you are far too young to be getting it! Next step is drugs. You'll take one until it stops working for you, then you'll change to another and so on...

    Anyway, its fine to be scared, we all were, I suspect most of us still are to a degree, but there is one certainty: This disease is never as bad as your imagination will make it.

    Oh, and you've come to the right place. Be very careful about the internet, most of the stuff about cancer is either very out of date or just bat--it crazy.

    Good luck Tigger

  • tiger09
    tiger09 Member Posts: 9
    edited August 2016 #5
    Dutch1 said:

    You can hold on to your towel

    You can hold on to your towel for a while yet.  I share a lot of your situation.  I was quite a bit older when my Stage IV cancer was found.  I also had my right kidney, adrenal gland and a bunch of lymph nodes removed.  My tumor was around the same size as yours.  That was 3 and a half years ago.  Certainly, you and I share difficult circumstances.  Get yourself a good oncologist and have another oncologist selected for second opinions (as the need for a 2nd will likely become necessary at some pivotal point regarding treatment options).  What's been successful for me was participation in an Everolimus test trial starting 6 weeks after surgery.  My cancer showed up again about 18 months after surgery ... but not to an overwhelming degree.  I've been on two different drugs and have gone through radiation since then and I have been pretty much stable for the last 9 months.  Diet (my wife is great about reading anything she can find on foods which are thought to be a help as we deal with cancer) and remaining active are important, in our view.  So, life has taken a turn for us, but we're dealing with it so far.  

    Hang in there.  I'm sorry to see that you were so young to get hammered by this disease.  Keep in contact with this discussion board and use it to gain reassurance (we all have ups and downs) as time goes by.

    Best wishes,

    Dutch

    Thanks so much, Dutch! I have

    Thanks so much, Dutch! I have already changed my diet and am doing physical therapy, but looking forward to doing more once I'm feeling better. I'm currently being treated at UCLA but I have reached out to NIH. I want to be sure I'm doing everything I can.

  • tiger09
    tiger09 Member Posts: 9
    edited August 2016 #6
    Footstomper said:

    Hi Tiger!

    Stage 4 Grade 4 here. Diagnosed in May 2013. Kidney and part of vein removed, mets still in lungs. I know when you get diagnosed it feels like a death sentence but it really isnt, especially with the latest discoveries in immunology. I really believe that Cancer is on the same road as AIDS, changing from a terminal to a chronic illness.

    Having said that, its still a serious disease and you are far too young to be getting it! Next step is drugs. You'll take one until it stops working for you, then you'll change to another and so on...

    Anyway, its fine to be scared, we all were, I suspect most of us still are to a degree, but there is one certainty: This disease is never as bad as your imagination will make it.

    Oh, and you've come to the right place. Be very careful about the internet, most of the stuff about cancer is either very out of date or just bat--it crazy.

    Good luck Tigger

    Thanks very much!! Yes, I was

    Thanks very much!! Yes, I was otherwise healthy - definitely not a diagnosis I was expecting, and I was quite the "rare bird" in the hospital after surgery. I felt a bit like a monkey on display in the zoo, what with all the med students and residents who wanted to see the 29 year old RCC patient. 

    I really like how you equated cancer to becoming more like AIDS. I can deal with chronic illness, but terminal is hard to swallow.

    I've learned my lesson on Internet research; trust me!

    Thanks again, and best of luck in your recovery too!

  • Allochka
    Allochka Member Posts: 1,072 Member
    edited August 2016 #7
    Tiger, welcome and get ready

    Tiger, welcome and get ready for a fight, not for throwing the towel :-) Look how many Stage 4 guys are here, years after after diagnosis, living lives, making plans! 

    It really turns into chronic illness nowadays. My husband was also young when diagnosed (36 years old). I also remember him being the youngest in oncological hospital. 

    Your age is your strength. Easier to deal with treatments, good physical shape, and so much to live for! You are here for a long run! And we are here to support you as much as we can!

  • Teashea
    Teashea Member Posts: 89 Member
    #8
    Far too young

    Very sorry to hear from someone so very young. One day at a time is all we can do.

  • Kangaroorex
    Kangaroorex Member Posts: 47 Member
    #9
    Welcome

    I can't say I am happy to see you here...  but you have found a very good support spot and one of the largest groups around that are willing to talk and share experiences.  I was diagnosed at 46 with stage IV RCC and they wound up removing a 10 pound tumor from my side, along with a kidney and adrenal gland.  this left me with a single tumor in my other adrenal gland.  Two and a half years later and I am still in the same condition i was then (well okay, i am a little trimmer and i like to think i am in a little better shape :)) and a lot wiser.  I have had good luck with immunotherapy although i am currenly on the classic Sutent.  I also am still working full time a director of Controls engineering at my company.

    there are a lot of treatments out there and more coming every day, including some that hold the promise of a cure and others that hold the promise of permanent stasis.  keep a good attitude and keep your friends close dont feel trapped by your disease.

    And please, feel free to contact me by private message if you want to talk.  its something I like to do (my friends and coworkers would say maybe a little too much) :) 

  • jason.2835
    jason.2835 Member Posts: 337 Member
    #10
    I feel you.

    Kang,

    I definitely feel your "lab rat" comment; I was 35 when I was dx'd and I got much the same sensation... Of course I was treated at a teaching hospital (Jefferson in Philadelphia), so I kind of expected some of that.  But it was definitely not something that they see every day; a person under 40 with RCC.  We are a rare breed.  I just look at it this way... we may be young enough to see the answer to cancer in our lifetimes.  

    - jay. 

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