After the appendectomy in my local hospital, my daughter and sister and my wife started their research to find a doctor who was knowledgeable about pseudomyxoma peritonei (PMP). That search found Dr Pingpank of the Hillman Cancer Center in Pittsburgh in Pennsylvania. We flew to Pittsburgh in early December 2016 to meet the doctor and have a consult. The doctor had studied with Dr Sugarbaker, who was one of the doctors that created cytoreductive surgery and HIPEC* as the treatment for PMP. The mother of all surgeries was scheduled for January 20th, 2017. To say the surgery was rough is an understatement. It was challenging. HIPEC was done during the 10-hour surgery. Resection and gallbladder removal and debulking. No other chemo was ordered.
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. Now I am searching for a way to get on with life including by joining the support group. It’s great to hear that I’m not the only one who feels the way I do. You always feel so isolated and the group and the stories of other survivors really helps.
I’m getting stronger every day physically. I put on a few pounds and the feeling of tightness in my abdomen has subsided. I did have a few infections in the suture line and needed same-day surgery to take care of it. Otherwise, I resumed exercising and feeling a lot better.
*HIPEC – Hyperthermic (heated) intraperitoneal chemotherapy
My journey started in October 2013 (I was 53 years old), when I had an ultrasound to determine if I had gallstones or an issue with my gallbladder. The results showed a small cyst and mild fluid in my lower right abdomen area. It was decided that we would monitor the cyst and fluid and have an MRI in one year. We thought it was nothing more than an ovarian cyst. I never thought it would lead to a diagnosis of Mucinous Appendiceal Adenocarcinoma.
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.