1. Hello hun hope you are well .

    I was just wanting some advise really see I to have phaeochromocytoma tumors one in my belly and a big one on your back in my 2 ribs. I also have a little bit on my spinal cord.
    I had one removed as well as my kidney in 2o13.
    Wondering how long you have had it and do I have a fighting chance kind regards Michelle x

    Liked by 1 person

    • Michelle, you can read about my first experience with this disease under ‘my very first pheo’ – that was the first time I had it when I was just 19 years old. I’m now 26, I was re-diagnosed with metastatic disease, a cancerous form of pheochromocytoma at 24, so coming up on almost 3 years now. I had a massive de-bulking surgery after I was re-diagnosed with mets, I had over 10 tumors removed from all over my abdomen, kidneys, liver, etc.

      I’ve been having various experimental treatments since that time, which I’ve been recording on my blog – and you can read about under the menu. Without it, I don’t think I’d have stood a chance. My disease is aggressive, and I can’t speak for anyone else, but I think the key is making sure you’re always advocating for yourself, researching, staying ahead of what’s available, and trusting your instincts of what’s right for YOUR own care.

      They give a lot of ‘stats’ as far as how long we will live and all that, but i have learned what’s important is making sure we beat the odds just ensuring our time is well spent having the best QUALITY of life possible, because all of us will die one day, but what this disease will take away from you is HOW you live. So, no one can tell you anything else, but I can tell you how important it is to control the quality of your live you’re living. That’s the only thing that counts πŸ’–



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