A recent study in JAMA Oncology revealed that around 10% of individuals diagnosed with appendiceal cancer have an inherited genetic variant that increases their risk for cancer predisposition. This is the first study to identify inherited risk factors for this uncommon type of cancer.
The treatment and curability of cancer of the appendix depends on various factors such as the type of cancer, the stage of cancer, and the overall health of the patient.
The question we’d all like answered!
So little is known about this cancer and I’m sharing my story in the hope that I can find someone else with the same diagnosis.
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I just re-found an article and while it isn’t specifically about pseudomyxoma peritonei (PMP) or appendix cancer, it is very relevant to everyone diagnosed with any cancer and I remember reading it and that it helped me with where my diagnosis (and two recurrences) put me and those around me.
Through Cancer 52, Pseudomyxoma Survivor has received a special invitation to view a multi-disciplinary diagnostic centre (MDC) in action. MDCs are being trialled here in the UK and they are set up so that patients who present with non-specific symptoms can go to a one-stop shop and have all of the tests they require to help with a diagnosis.
The BMJ defines evidence-based medicine as:
“the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients”
It’s a constantly evolving definition and at Pseudomyxoma Survivor, we always look for scientific evidence to back up suggested treatment plans for pseudomyxoma peritonei (PMP) and appendix cancer patients.
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.
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.
Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases and the theme for this year is research. Research is key as it brings hope to the millions of people living with pseudomyxoma peritonei (PMP) and other rare diseases across the world and to their families.
It’s tough being only 20 years old and an appendix cancer patient at that. Mainly because no one expects or even wants to believe you could even end up developing cancer, and the worst culprits are medical professionals. True, the odds are so low it’s a waste of time to even bother, but that ‘waste of time’ could have cost me my life!