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. This scan showed a hot spot and four days later, the surgeon removed my app
endix and the cancer diagnosis was given. I am a rough and tough retired NYPD lieutenant. This diagnosis was such a shock and life-changing. I guess no one ever expects to hear the ‘C’ word but when you do it changes your life forever. I was a mess. I’m getting better now but I know I have post-traumatic stress disorder (PTSD).
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.
– Marty
*HIPEC – Hyperthermic (heated) intraperitoneal chemotherapy
In case you missed it...
Why you should see a PMP specialist
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 thought I had a hernia
John went into hospital for a hernia operation. Afterwards, he was told that it wasn’t a hernia but a ‘small, bloody mass’. The pathology came back as pseudomyxoma peritonei (PMP).
MOAS – It’s not a race
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……..