When someone new to the group posts, you very often see multiple members encourage them to seek an appendix cancer specialist. That was also the case when I found the support group after I was diagnosed in June of last year. I was actually misdiagnosed by my first surgical oncologist who thought it was ovarian cancer and told me that it was well behaved and that they would remove it and I would be fine…
Take your time, there’s no rush, go at your own pace and don’t feel pressured to be at a certain stage, just because someone else is. You’ll get there, in your own time, be happy still to be breathing and above ground……..
Those of us affected by pseudomyxoma peritonei and appendix cancer are amongst the millions of people affected by rare diseases around the world. As a community, we face huge challenges each and every day. Can you imagine going to multiple doctors who cannot diagnose your condition? Or being told that you aren’t a candidate for the gold standard of treatment for your disease? Or realising available treatment is too expensive? Or finding out that there are no surgeons in your country that can treat you?
I can’t say it enough… are you dealing with a PMP specialist? If not, I would say you must.
They are the ones that have seen this stuff and the weird things it does. They can give better ideas as to what to do.
In my case, waiting seemed the best option at the time but with the specialist’s input, I chose to go ahead and now, even with the debt, the new body norms and everything, I am sooooo glad I followed his advice! He would have told me to watch and wait if in his experience there was a low risk. And I would have done it.
Just over 18 months ago, I had a full hysterectomy because they thought I had ovarian cancer….
I didn’t have any related symptoms before my diagnosis. I went to the urologist for some UTI treatment. The doctor (my hero) ordered a CT scan. That was the beginning of my journey. PMP is so rare and the right treatment is so important. You have to do research just to find the right medical team that is experienced in treating PMP. My wife and family, of course, were there for me.