Stories
Meet our inspiring survivors
Courage in the face of cancer and of treatment is a common thread running through all our stories, even though they’re all very different. Read how appendix cancer and pseudomyxoma survivors have fought through stormy times and misdiagnoses, and yet somehow found an inner strength. Overcoming fear and uncertainty to face treatment requires immense courage and perseverance.
You are not alone in this journey. Many others have walked this path before you and found inner resources they never knew they had. By sharing their stories of misdiagnoses, difficult symptoms and times of struggle, these survivors hope to give you hope and empower you with the knowledge that healing is possible. Your own story – of resilience, determination and healing – has the potential to inspire and uplift others just beginning this difficult journey. If you would like to share, to help those newly diagnosed, please click here.
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’.
I had abdominal pain and a small hard lump to the left
When I had abdominal pain and a small hard lump to the left, thought to be IBS playing up and that I needed to get it under control. It wasn’t that simple.
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.
Marilyn’s Story
When my doctor told me what he had discovered during surgery for a suspected ovarian tumour, I could barely pronounce the words let alone understand what it might mean for me.
The doctor suspected that I had kidney stones
I was 59 years old when I was diagnosed with pseudomyxoma peritonei (PMP) and it took me eight months to get a diagnosis. My scan showed a “fog” or liquid around my liver and my spleen.
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.
An ultrasound showed cystic masses in both ovaries
My initial symptom was a tiny pain (feel like pins and needles) from my lower abdomen, it only last a couple of seconds, it came and went. I was a healthy, active mum filled with energy and a busy lifestyle.
Sent for ultrasound for possible hernia
For well over a year, I noticed my belly steadily getting bigger though I didn’t seem to be eating any more than normal. I of course tried dieting a few times but when I didn’t lose weight I gave up pretty quickly!
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.
My stomach looked really distended
When we got home from a family holiday and I looked at the photos, my stomach looked really distended. After noticing this, it just seemed to get worse and felt quite hard. I went to see the Doctor and he said I probably had wind or had just put on weight.
My belly size surprised the doctor more than my hernia
He asked if I drank a lot, thinking it was a liver problem causing accumulation of fluid in the abdomen. He requested an ultrasound, which revealed the presence of intense ascites. There seemed no other abnormalities.
I was devastated at first as I am a single parent
Before I was diagnosed, I suffered from abdominal pain and tiredness. I felt full quickly after only eating small amounts. I saw various doctors who gave me a diagnosis between appendix, ovaries and bowel but no firm diagnosis.
The Waiting is Almost Over!
It’s just two days until my operation but how did I get to this point?
The call came out of the blue. When my gynae consultant’s secretary called, I thought she wanted to say the appointment I had changed was inconvenient. But no, she wanted to ask me to come back in! Even then I wasn’t particularly worried, didn’t really have a clue why…
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.
I had no outward sign that this mass was inside my abdomen
Following an abnormal smear, I was referred to my local gynaecological oncology centre where an ultrasound scan revealed a complex mass believed to be ovarian in nature.
My waist kept expanding over a period of seven months
I was working as a daybaker and would come home and fall asleep on the sofa soon after I got home. I was exhausted and, despite exercising regularly and when my mother asked me if I was pregnant I began to feel unsettled. I also experienced some back pain that felt like my muscles were torn apart (like Velcro).
Surviving with pseudomyxoma peritonei
When I was diagnosed in with PMP in 1999, there was no information, no glossy pamphlets, no specialist nurses, no web site, NOTHING.
Jennifer tells us about Jim’s diagnosis
Jim's surgeon's secretary (for his appendectomy) called him and told him they needed to make another appointment because they "had found something". Thank G-d I decided to go to that appointment! The surgeon came in and told Jim, "You have appendix cancer and I don't...
The patient stories shared on this website are personal accounts of individuals who have been affected by pseudomyxoma peritonei (PMP), appendix cancer, or related rare peritoneal surface malignancy (PSM). These stories are not intended to provide medical advice, diagnosis or treatment. Every person’s medical situation is unique, and what works for one person may not work for another. The stories shared on this website should not be used as a substitute for professional medical advice, and readers should always consult with a qualified healthcare provider regarding any medical concerns or questions. The views and opinions expressed in the patient stories are those of the individuals and do not necessarily reflect the views of Pseudomyxoma Survivor or its members.