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.
We hope that we can help you by sharing stories both from pseudomyxoma peritonei and appendix cancer survivors. If you would like to share yours, to help those newly diagnosed, please click here.
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.
Even if your case is rare, do not give up…
Fertility treatment, ovarian cysts, miracles, hernias and crossed fingers.
I was diagnosed with an inflamed appendix
Before I was diagnosed, I experienced increased abdominal size and piercing pain which was diagnosed initially with an inflamed appendix. It took about four months and another doctor for me to get the correct diagnosis at the end of January 2014.
When you’re faced with life and death, you choose life
I was 35 and had only just embarked on what should have been the most exciting chapter of my life so far. I was living in Australia with my girlfriend Laura, and whilst working on making the most of the hospitality and weather.
But the care-free life we were just starting to enjoy wasn’t to last, and in a devastating turn of fortunes we were faced with a choice that no one should have to consider; life or death.
Feeling proud
My 10-year-old son has recently been to pioneer week where he goes to his new secondary school for a week to experience life there. He was asked to write about someone who inspires them.
I had flu-like symptoms and was diagnosed with PMP
Initially, I had flu-like symptoms with pain in all the joints in my body followed by bad abdominal pain that did not go away.
Lisa takes part in a photoshoot
Following the Loose Women Body Stories campaign, Lisa took part in a photo shoot organised by The Sun newspaper. We caught up with her and talked to her about the shoot and raising awareness of pseudomyxoma peritonei.
I had cytoreduction and HIPEC and now I’ve climbed Mount Kilimanjaro!
My local hospital happens to be the centre in Israel for treating this disease and two of the surgeons working there have extensive experience in performing cytoreductive surgery and HIPEC. To those of you have undergone this procedure, I don’t need to say more. If you are still recovering or about to undergo it, I wish you excellent care, strength, patience, and a complete recovery.
I had shortness of breath and my sides ached
I was experiencing shortness of breath and my sides ached when walking around, nothing specific. I had an ultrasound which showed a large tumor which was confirmed by MRI. I had surgery at my local hospital to remove a tumor the size of a football and my diagnosis of pseudomyxoma peritonei (PMP) was confirmed.
I was admitted to hospital with abdominal pain and operated on the next day
On March 1st 2016, I was admitted to hospital with abdominal pain and operated on the next day. The surgeon found a tumour in my appendix and mucin throughout my abdomen. My story is about what happened next, my surgery, coping with the stress and the positives that came out of it.
Both the appendix cancer survivors’ stories and the pseudomyxoma peritonei survivors’ stories contained in these pages contain the views and opinions of the individuals who have written them and do not necessarily reflect the views of Pseudomyxoma Survivor. The stories represent the experiences of the individual and should in no way be used as a guideline for your own experiences and treatment options. We are all individuals, everyone is different. We recommend that you take advice from your doctors for specific information.