Stories
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I’m now on ‘watch and wait’ following a diagnosis of pseudomyxoma peritonei
For me, it all started with blood in my urine and an increase in the size of my stomach. In retrospect, I could feel the mucin moving when I walked. Now I’m on ‘watch and wait’.
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.
I was diagnosed with pseudomyxoma peritonei, but it wasn’t
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.
Dead Man to Iron Man
As I came to terms with the news, I understood that it would be important for me to get as fit as I could to face such an invasive operation ominously dubbed the “The Mother of all Surgeries” or MOAS.
Stacey’s Local Landmarks Challenge
I don’t like running. I never have! I find it quite dull, BUT, give me some motivation and a challenge and I’ll do it!
Annie and Jim’s Local Landmarks Half Marathon
Two and a half years ago, neither Annie or Jim had heard of pseudomyxoma peritonei (PMP). In November 2017, Jim was diagnosed with a high-grade appendix tumour that was the first stage of the disease.
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).
I’ve gone from 0km to 10km in just over 6 months!
In 2015, I had cytoreductive surgery and HIPEC for pseudomxyoma peritonei. To thank Pseudomyxoma Survivor for all the support I was given and all the friends I have made through the charity, I’m doing the Southend 10K to raise funds for the charity. I would have been so alone and desperate without the charity and I cannot thank you enough x
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
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…
Jill’s Book Review
I was really positive about my recovery after the major operation for pseudomyxoma peritonei (PMP). I took things really slowly and took good care of myself.
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.
This Illness Sucks but I’m Embracing the Moment
Just over 18 months ago, I had a full hysterectomy because they thought I had ovarian cancer….
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.
Are you an appendix cancer or pseudomyxoma peritonei survivor?
We'd love to read your story
Many people find it helps to talk about their experiences. This can be helpful for others who are going through the same. We always respect your privacy — there is no expectation for you to provide a story to fully participate in our support groups or buddy scheme nor to publicly share personal details such as your name or a photograph. We are happy to support however much, or how little, you want to share with others.
If you would like to share your story with us and with other survivors, we’d love you to get in touch with us!