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…
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.
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.
I was experiencing shortness of breath and my sides ached when walking around, nothing specific. I had an ultrasound which showed a large tumor which was confirmed by MRI. I had surgery at my local hospital to remove a tumor the size of a football and my diagnosis of pseudomyxoma peritonei (PMP) was confirmed.
In April 2016, my husband, Donald, was suffering from bad night sweats and severe belly pain along with a fever. He went to the doctor in April 2016 and was told to take some acetaminophen (paracetamol) and go home. Less than two weeks later, it was so bad that Donald went to the Emergency Room.
The last year and a half has been a profound and unmooring experience, and one I turn over in my mind with gratitude, disbelief, and amazement.