22 year survivor

This could turn out to be the best site I have ever seen/posted to!! I am a 22 year pheochromocytoma survivor. I know, it's rare, and alot of people have never heard of it. I get that alot. However, it is very real!! I am post 6 surgeries to remove tumors, now surgery is no longer an option. Have had right adrenal gland, lobe of my liver, and right kidney removed. Present day radiation and chemo treatments have little to no effect on the tumors, so no option there either. There have been 2 clinical trials at Mayo, but neither showed any long term promise. Another is on the horizon, but still almost 2 years away. Now I have and 11mm tumor in my left kidney! Docs do not believe this is related to the pheo, I go back to Mayo to see kidney specialist next week. My doc there tells me they will probably do radiotherapy ablation to try and destroy the tumor. Did my studying on that and have my list of ?s ready for the new docs. Not that there is a good time for a diagnoses like this, but really poor timing here; my husband and I petitioned for custody of a 7 month old family member! Now so much is up in the air, not knowing what to expect..AGAIN!! Thanks for listening, and feedback would be so welcome! Anyone who reads this have a terrific day!


  • bluerose
    bluerose Member Posts: 1,104
    I am roughly same number of years out as you are

    Welcome to the site and to my way of thinking this is the best site on cancer support online. You will find alot of input from members here and alot of caring and validation at the same time too.

    I had non hodgkins lymphoma and know nothing of your type but I am fascinated by long term survivorship and all that goes with it - waiting, new cancers, side effects of treatments, emotional issues blah blah blah.

    I was just posting on an amazing potential breakthrough in treating tumours called the nano delivery system (delivery of drugs) straight to the tumours. Of course it's a long way from being available as a treatment but it's very interesting indeed. Your doc's idea of radiotherapy to destroy the tumours sounds similar in a way as it targets the tumours as well although I really don't know the details of the radiotherapy ablation, just sounds targeted as is the nano in a way.

    Just for interests sake here is the link to the story of the man and his wife who came up with the idea of how to deliver chemo without damaging too much other tissues.


    I am sure that in time you will find a post to this one from someone who has a similar cancer to yours.

    All the best.


  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Pontiac
    Sorry I don’t know much about your type of cancer, but I am glad that people like bluerose were able to help you some. So for now I will just say welcome to CSN my firend.