Peritoneal Cystic Mesothelioma

[Gillby1]

Hi,

My name is Gill, and I am 36 years old with a partner and two boys (4 and 5).

Following several years of abdominal discomfort which I put down to having had two pregnancies close together, one c-section, and forceps delivery of one large baby. Doctors then put it down to IBS, and I spent a great deal of time excluding foods trying to work out what was causing the problem! I also started noticing real hormonal changes - it felt like extreme pms for two weeks of the month. I genuinely had a feeling that something was wrong, and without being too dramatic, that the pain felt sinister, somehow. My doctor finally sent me for an ultrasound when I told him (untruthfully) that j was bleeding in between my periods. This showed up a large multi cystic mass on the left ovary, and when I went in to hospital to have it removed, the surgeon aborted the surgery when he found cysts spread throughout the peritoneal cavity. At that point I was told that I had a very rare condition that would require further treatment, and that I would need to be referred to one of the only two specialist centres in the UK that could deal with this condition. The surgeon suspected a rare cancer called Psuedomyxoma Peritonei(PPM), and I spent a frightening week looking into the condition and wondering whether it had been caught early enough to be treated! It's odd to find yourself if a position where you are genuinely, desperately hoping that you will be allowed to have massive surgery - Cytoreduction with HIPEC, otherwise known as the MOAS (Mother of all Surgeries).

I was quickly referred to Basingstoke, where my incredible consultant told me that the scans and pictures actually indicated an even less common cancer called Peritoneal Cystic Mesothelioma. It used to be considered a benign disease, but has been reclassified as a low-grade cancer. I believe it doesn't usually spread through the blood or lymph nodes, but does occasionally become malignant. The difficulty is that there are apparently less than 200 previously known cases, so very little is known about the disease! However, the surgery is the same is for PMP. Thankfully the consultant reassured me that it looked like surgery should be able to remove the tumours, and HIPEC (heated intraperitoneal chemotherapy) would be used to try to kill off any remaining cells that might be invisible to the eye.

On Nov 16th 2015 I was admitted for surgery, and during the six or seven hour procedure I had a hysterectomy, oopherectomy (both ovaries), omentectomy and peritonectomy. HIPEC was administered at the time. I was lucky enough not to require a bowel resection or ileostomy, as only the external bowel appeared to be affected. The surgery was deemed successful, as all visible rumours were removed. After three days in Intensive Care and seven days on a specialist ward, I was allowed home. The incision was considerable, but I felt very little pain and was off all pain relief by about day five. The physio team made sure I was out of bed and doing my breathing exercises straight away!

I am now ten weeks post op and moving around fairly comfortably. I will require annual MRI scans to detect any recurrence, as I believe this type of cancer has a high recurrence rate. In the mean time I plan to take good care of myself, get lots of exercise and rest, and eat lots of veggies!