Survivor’s Story (USA) articles

The top of the paper read “Carcinoma of the Appendix”

After my ruptured appendix was removed, the surgeon said the operation “took a little longer, it was messy in there.” For the follow-up, he called me in earlier to give me the bad news.

We thought it was nothing more than an ovarian cyst

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.

The disease was actually growing out of my belly button!

I do an exercise class and I was having trouble keeping up and my belly was growing with no changes to my diet. In my head, I was thinking that was just signs of perimenopause and that was my new figure. Some women just have a muffin top at 44, right? I was also going to the restroom for frequent urination. I was under the care of a urologist for that at the time of my diagnosis with pseudomyxoma peritonei or PMP.

I was misdiagnosed by my first surgical oncologist

The recommendations from the people in the support group are because they care. The decisions we make are literally life and death.

« Older Entries

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.

You have to do research to find the right medical team that is experienced in treating PMP

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 shortness of breath and my sides ached

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.

Being sick

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 knew that I didn’t have textbook appendicitis but does anyone really have “textbook appendicitis”?

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.

I was told it looked like ovarian cancer… but it wasn’t

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.

Janesa’s journey with pseudomyxoma peritonei

The most common question I get asked is “How did you know something was wrong?”. So, here’s the story.

Misdiagnosed with ovarian cancer

On November 30, 2009 Megan went to Northside Hospital, Cherokee, with severe abdominal pain. After hours of testing and exams, she was admitted to do further testing. Megan’s abdomen was swollen to the point that the doctors, had they already not tested for pregnancy, said that she looked to be about five to six months pregnant.

How shall I tell my children that I have appendix cancer?

Looking back, I think we were trying to protect our children from the reality of the disease. Initially, when we discussed my diagnosis, we used terms like death, dying, chemo and cancer. We thought we spun this into a very positive approach, but our “method” may have given our children a confusing and unrealistic message about survival instead.

« Older Entries