Lorraine's pseudomyxoma peritonei (PMP) cancer experience

Living with a rare peritoneal cancer - Lorraine's cancer experience
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“Every single time I came into hospital I not only felt safe, but I felt that everyone went above and beyond to do their very best for me. ”

Lorraine Kingsley

Lorraine was diagnosed with a rare form of peritoneal cancer known as PMP back in 2017. Since then, Lorraine has undergone three operations at The Christie Private Care, part of HCA Healthcare UK, to treat her cancer, and is now living with stable disease. Here, she shares her story with us.

Lorraine's story

In June 2017, Lorraine, a 59-year-old retired paediatrics nurse from Manchester, went to see her GP as she had noticed consistent bloating around her abdomen. Despite her GP thinking it could be a hernia, she was persistent in asking for a referral to a gastroenterologist to determine the cause of the bloating. Her gastroenterologist expressed concern when she described her symptoms, and he referred her immediately for an ultrasound scan and then to Mr Chelliah Selvasekar, Consultant Colorectal and Laparoscopic Surgeon at The Christie Private Care in Manchester, part of HCA Healthcare UK – care she was able to access through her private medical insurance with Bupa.

The results from the scan were a shock to Lorraine and her family, as she was diagnosed with pseudomyxoma peritonei (PMP) - a rare cancer which often starts in the appendix and is slow-growing. This type of tumour can produce a large amount of fluid and was the reason why Lorraine felt so bloated.

Understanding her diagnosis 

During this time, Lorraine naturally had lots of questions as the cancer was so unexpected and so rare, but the team were there to support her. Lorraine adds: "Everyone at The Christie Private Care were amazing throughout. Victoria Little, my Clinical Nurse Specialist (CNS) was wonderful; she was happy to chat through anything and everything with me, as was Mr Selvasekar. After my diagnosis, she was able to answer any questions my husband and I had in a way which we were able to understand. Not only was she the person who joined up the dots between the different specialists and the care I received, but she was also my advocate throughout the whole experience."

Mr Selvasekar explained that the best course of treatment for Lorraine would be to first undergo an operation to remove the fluid and get a closer look at the tumour. One week later, Lorraine underwent a four-hour operation, called a debulking, where Mr Selvasekar removed two and a half litres of fluid from her abdomen. During this operation, he also removed the tumour from her appendix – the cause of the fluid build-up. Now able to see the area more clearly, he could confirm without any doubt that it was PMP, and that Lorraine would need another very long and complex operation to remove as much of the cancer as possible from her abdomen and internal organs.

Lorraine commented: "Right from the beginning, Mr Selvasekar was amazing. After my initial debulking operation, I was in hospital for eleven days, and each day he would come and visit me on the ward to check on me. On the last day before I was discharged, we talked through the second procedure, and he told me to get home and get my strength back, because the next surgery he would be performing was the biggest surgery that they undertake at The Christie Private Care."

Access to a revolutionary treatment option 

In October 2017, Lorraine had cytoreductive surgery with HIPEC – a procedure which is often referred to as 'the mother of all surgeries' due to the time the operation takes, the complexity of the operation and the number of specialist surgeons it involves. There are two specialist centres that perform cytoreductive surgery with HIPEC in the UK – one of these is The Christie.

PMP by nature can spread and stick to the outside of various organs in the abdomen, so this procedure involved specialists across multiple areas of medicine. The aim of this operation was to remove as much of the PMP as possible. In Lorraine's case, this meant removing her spleen, gallbladder and part of her bowel. Once all visible signs of cancer were removed, Mr Selvasekar put a heated chemotherapy liquid into the peritoneal space, to destroy any remaining cancer cells. This is called hyperthermic intraperitoneal chemotherapy (HIPEC). After 90 minutes, the chemotherapy liquid was then drained from Lorraine's abdomen. 

Specialist support to aid her recovery

Commenting on how she felt after this major surgery, Lorraine added: "After a 12-hour surgery I naturally felt incredibly drained – after all there wasn't much left of me as they had to remove my spleen, gallbladder and some of my bowel! But the care I received in preparation for the surgery, in intensive care and on the ward was absolutely outstanding. I had so many specialists who were there, ready to care for me. I saw my consultant, CNS and physiotherapist every day – as well as having regular visits from my dietitian and pain management specialists. When I came out of surgery, I still had an epidural to manage the pain, so it was so important that the pain management specialists were able to ensure that was working correctly and that the morphine was well-managed when it was introduced."

After spending a couple of weeks in hospital, Lorraine was discharged and recovered well at home. However, just a few days before her daughter's wedding in May 2018, she was experiencing severe discomfort and found it difficult to sit down. Lorraine commented: "I was so worried about the discomfort, which was caused by the stent which was fitted to widen a stricture in my large bowel, as I wanted to enjoy my daughter's special day. Luckily, Mr Selvasekar was able to remove my stent in time for my daughter's wedding, which honestly meant the world to me and the family. My daughter even created a banner thanking Mr Selvasekar and the team for making it happen!"

Undergoing a third operation

Whilst Lorraine was still being monitored with regular scans, she was able to get back to doing the things she enjoyed, like going on lots of amazing holidays with friends and family. However, in January 2019, following one of her scans, Mr Selvasekar broke the news to Lorraine that the PMP had returned. Lorraine then underwent another cytoreductive surgery with HIPEC, which took 10-hours. Mr Selvasekar and his colleagues were able to remove the majority of the PMP, but this meant removing a further portion of Lorraine's bowel. Unfortunately, not all of the cancer could be removed during the surgery, which means that Lorraine is now living with cancer, but cancer which is stable.

After Lorraine recovered from this surgery, she was referred by Mr Selvasekar to Professor Mark Saunders, Consultant Clinical Oncologist, to monitor her cancer with a scan every three months. Each time she has visited Professor Saunders the cancer has remained stable, and in October 2020, their check-ups were moved to every six months.

Living with stable cancer

Commenting on the fact that she is now living with cancer, Lorraine said: "At first it was quite a scary thought and I found it quite difficult having the check-ups every three months, as the build-up to the scans and the results would be incredibly stressful and would seem to come around so quickly. It was so wonderful to then hear that I have double of the amount of time in between those scans to get on with my life."

Lorraine adds: "Every single time I came into hospital I not only felt safe, but I felt that everyone went above and beyond to do their very best for me. From the healthcare assistant who provided friendly and compassionate care each day and the lovely receptionist who was courteous and kind, to the wonderful surgeons, physiotherapists and nurses – everyone has been amazing. I recovered so well from all three of my big operations, and I think that has a lot to do with the wonderful care I received."

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