Calling US patients: Do you have an upcoming surgery or an ascites drain scheduled in the United States?
If so, please consider donating your excess tissue for an important research project. The ACPMP Research Foundation has partnered with Pattern.org to enable patients to donate their excess tissue or fluid to the Cancer Cell Line Project at the Broad Institute of MIT and Harvard.
Currently, Dr Sugarbaker is the Director for the Program in Peritoneal Surface Oncology. His interests are in gastrointestinal cancer, gynecologic malignancy and mesothelioma.
The recommendations from the people in the support group are because they care. The decisions we make are literally life and death.
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 had an ultrasound which showed a large tumour which was confirmed by MRI. I had surgery at my local hospital to remove a tumour the size of a football and my diagnosis of pseudomyxoma peritonei (PMP) was confirmed.
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.
I cried as I was driving home from my doctor’s appointment. Then I picked myself up when I got home and googled “low grade mucinous appendiceal neoplasm” because I needed to know everything about this new enemy. That’s when I found the term pseudomyxoma peritonei.
Dr. Sardi is one of Maryland’s leading surgical oncologists who use Hyperthermic Intraperitoneal Chemotherapy (HIPEC) to treat late stage, complex cancers of the abdominal region.
Laura Lambert, MD is a surgical oncologist who specializes in treating peritoneal surface malignancies including pseudomyxoma peritonei.
After my diagnosis with metastatic, well-differentiated mucinous adenocarcinoma of the appendix, my doctor said I have a 72% chance of being alive in 10 years; those are great odds for a cancer patient.
The most common question I get asked is “How did you know something was wrong?”. So, here’s the story.