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. I had the whole ovarian cancer scare… my oncological surgeon went in, realized what it was and removed all organs and mucous she could then sewed me up and advised me to get to a specialist.
My very well-meaning GP doctor referred me to a top oncologist. He said he has dealt with it before. He told me we’d do a port, 6 months of chemo and then see how it’s doing… He said he had good results from the three people he’s treated before. I was scared and he was very reassuring about doing it that way.
My partner said let’s go see someone who is listed as a specialist just in case. We spoke with a specialist who explained that he deals with this cancer every single day, he has seen hundreds of cases. The scans looked pretty okay and my first surgeon said things like she tried to get it all and even held my liver in her hand and saw nothing. The specialist said sometimes this stuff hides and or blends in a CT. So he did an exploratory look.
There was cancer on my liver, spleen, diaphragm and other places. My boss was threatening my job if I was out for another surgery. I wanted to wait about 4 months to rebuild some sick time and FMLA time. The specialist said he recommended I do it as soon as possible. I made it happen…
Just before the surgery, they marked me for an ostomy bag. I didn’t know that was a possibility but was told that sometime this cancer hides in the intestines and I may wake up with a bag. This scared me more than even death at the time. I went under, the specialist removed more organs, scraped what he couldn’t remove and burned what he couldn’t scrape or remove. He pulled out my intestines and scoured them because he knows this disease and has seen it hide in unusual places.
I woke up without an ostomy bag which was the biggest relief. I had to sue my employer to protect my job and ability to have insurance and a way to pay my bills, I have the lowest worst insurance because before this hit I was fairly young and super fit and no symptoms. I’m struggling with about $50k in debt because of all of this. I’m two years out, I have some new normals as how my body feels. And lastly, as of last week, I have no evidence of disease (NED) and will only have scans yearly now.
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 think I would be so much more stressed in some ways and feel it in there. I’m a weird health nut. … I wanted to not have chemo too….. but I followed the advice of someone who does this all day every day. I’m so grateful that I did. I feel ‘cleared’ and free now.
If I’d followed the oncologist’s advice, I probably would have gone through needless chemo and, as the disease was slow growing, I would probably be told “Chemo is holding it back, let’s continue the chemo course and hold off from surgery”. More needless chemo, with massive effects to my quality of life, all the while wasting valuable time.
All that said… each case is different and each person makes their own choice based on where they are. This is just my story and may have no relevance to yours but I do remember asking questions of the support group and so appreciating the responses there to help me gather many points of view. This horrific tough decision and actions are yours to make and whatever you decide is absolutely the right decision.
None of us truly knows the absolute right thing to do or what the outcome will be. We do the best we can with all of the information we have. Whatever you decide is the right thing at that time.
And the group will support the heck out of you
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 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.