Hi, my name is Jemma and my story started back in July 2020. On July 1st, I was awaiting to go into theatre to have a planned c-section due to my baby boy being in the breech position. During the surgery, whilst I was lying on the operation table, I was told
“Oh, there’s an issue with your appendix. We’ll need to get another surgeon across to remove your appendix. There seems to be a tumour-like growth on your appendix and there is mucin leaking around your abdomen.”
Two weeks later, I receive a phone call to attend a appointment at the Belfast City hospital to meet Mr Lee, an oncology surgeon. During that appointment, I was told I had a low-grade mucinous neoplasm (LAMN) of the appendix, a type of appendix cancer. Mr Lee also told me that the surgeons had tried to remove as much of the leaked mucin as they could during the delivery of my baby boy. I was then told I’d have to go through various tests and CT scans to see if there was anymore tumours in my abdomen and that I would have to fly to a specialist canacer hospital in England to have an operation.
Fast forward to January 2021 and I got the phone call from The Christie Hospital in Manchester. I was told that they where finally able to arrange a pre-op appointment with me and book my surgery as I had LAMN and had developed pseudomyxoma peritonei (PMP). I was told what I would need to have removed during surgery. This included both my ovaries and gallbladder, peritoneum and omentum and stub of my appendix and belly button. I was warned to expect a big scar down the middle of my abdominal area.
In May 2021, during the coronavirus pandemic, I finally managed to fly to Manchester to my pre-op appointment and on May 5th 2021, I had my cytoreductive surgery with HIPEC.
I spent two weeks in hospital to recover before I could fly back home to my lovely 10-month old baby boy. This was the first time I’d spent a night away from him, not to mention having to fly to Manchester on my own due to covid restrictions and spending two weeks in hospital with no visitors but I got through it with the amazing help from the team at The Christie Hospital.
If it wasn’t for my miracle baby boy who decided to be stubborn as stay breech during my pregnancy, I might have never known I had LAMN/PMP and if it wasn’t for the amazing surgeons at the Christie Hospital I may have been a much serious way. Thankfully, during surgery there was no evidence of any mucin or tumours so they only removed what was planned at the pre-op — both ovaries, gallbladder, omentum, belly button, etc.
I’m now three months post-op and I’m still learning to live with my new scar and pains and backache from surgery. I’m still not being able to lift my son and I’m learning about the menopause at 30 years old but I’m glad I went for the surgery.
May 5th 2021 is the same day I had my CRS and HIPEC in Australia. I had a total hysterectomy, gall bladder removal, appendix of course, plus peritoneam and omentum removed. My diagnosis was also similar to yours in that my PMP was also found accidentally and I also faced it all during a pandemic. I wish you all the best with your recovery, It’s definitely a day by day thing but I am feeling better each day and able to do more and more.
I also found out I had PMP after an emergency c-section. And also dealing with it through a pandemic and having a new baby was extremely difficult. I’m a month post my surgery, I had extremely aggressive surgery, much more taken out then I could imagine but I was given a 99% chance of it not returning. All the best!
Keep a positive attitude, do things that foster happiness and contentment within yourself and those around you – these things keep your life motoring forwards. Keep strong and confident – it helps undoubtedly with all you do ….
Best of luck, Jemma and Virginia – life can be tough if you allow it that way.
I have had two HIPEC surgeries and have just learned the disease has resurfaced yet again – I have family living elsewhere in the world and with the pandemic we are unable to reunite. I could be living in war torn Afghanistan
When was your first diagnosis? I was first diagnosed in September 2019 and I am scared about what may be in store when I have a 2 year checkup next month.
I was diagnosed in 2014 with appendix cancer. Was found from a routine colonoscopy. A 2.5 centimeter tumor growing from the appendix. Had appendix removed & a bowel resection. Needed plasma & a blood transfusion. 3 & a half years later returned on the small bowel, the peritoneal wall,& the small bowel mesentery. Been on Bevacizumab (Avastin) & Irinotecan for 2.5 years. Was prepared for HIPEC surgery, but when opened up, the disease was too extensive to continue. Post op now six weeks, & ongoing chemo. Also was also told I had 2 years.
I don’t really know how to start, but here goes nothing. My ex-husband, my children’s father, was diagnosed just about a year before he passed. The first thing is he stayed sick, couldn’t hold down any foods. His stomach always hurt. They found the tumor on his appendix, and he had surgery to remove it. Upon opening the abdomen, they found numerous tumors. The doctors here still didn’t know what they were dealing with. Many, and I do mean MANY, surgeries later and ongoing Chemo treatments, they finally had some information for us. We have never heard of this cancer before and did not know what would be in store. My ex-husband tried so hard to remain strong. He fought so hard and wasn’t ready. But April 18,2022 he lost his battle. I wish I or someone would have come across this site while all this was going on. It would have answered so many questions. It is hard knowing my children lost their father. But I am so thankful to know that with the right treatment, there is progress. They told him 14 months. He fought hard for 18 months. Thank you all for sharing your stories. It all makes sense now.