The Ann Edgar Charitable Trust
NEUROENDOCRINE TUMOUR SUPPORT
My 5 year journey with NETs
I was diagnosed with incurable metastatic Neuroendocrine Cancer in December 2015 - a rare type of cancer based on the hormone producing cells that line the small intestine and other cells of the digestive tract.
I thought it would be interesting to mark my 5th Anniversary by describing the journey I’ve been living with this strange and rare disease. Whilst it is incurable, it’s not terminal, and as other fellow patients tell me, ‘we’re living with the disease and not dying from it.’ I’m certainly getting used to living with it.
Apparently 5 years used to be the life expectancy prognosis for this type of cancer not so long ago, before some of the treatments we have now were developed. Lucky me that my disease started in the year when treatments were more advanced.
My diagnosis followed a few months of quite severe abdominal pain where something didn’t feel right. Apparently these type of neuroendocrine tumours (NETs) that originate in the digestive tract do not generally produce symptoms unless they have spread to the liver. I had no flushing, for example, an early symptom of carcinoid syndrome related to the disease.
An eagle eyed consultant at the Edinburgh Royal Infirmary identified lesions in my liver from a CT scan and took a biopsy. It was a NET primary of the bowel I later found out. At the time I was convinced I had liver cancer, such is the power of shock on one’s ability to listen and take in information… But I was fortunate that I got such a prompt diagnosis. Others, I’m told, can wait for years.
When I received the diagnosis, my initial reaction was shock and disbelief, and when I was told it was a rare type of cancer, I almost convinced myself that what I had wasn’t a “real” cancer. For weeks afterwards I tormented myself about what I had done to cause the disease. I flashed back to my younger lifestyle - years of smoking, my alcohol intake, the London environment I lived in and all its exposures to carcinogens. I speculated whether it was related to the heavy, painful periods I had during my 30s and 40s. However I soon found out that research on the origins of NETs is totally inconclusive.
A couple of weeks following my diagnosis, I had an operation (a right hemicolectomy) to remove one side of my small bowel and attach my small intestine to the remaining portion of my colon. The surgeons were not able to remove all the diseased tissue because the tumours were so close to a main artery. But I was grateful that I was spared a stoma - one of the identified risk factors for bowel surgery of this kind.
The post-operative time in hospital was grim. I was in the colorectal ward of the Western General Hospital and I believe (although no medic has confirmed this) that I contracted C. difficile - a contagious infection which can affect people who have been treated with antibiotics. I was sick. Like food poisoningly sick. Everyone around me was sick and I couldn’t get out of there fast enough!
I was discharged five days later - Christmas Eve, 2015 - and whilst so glad to be home, my wound became infected. As a result, the recovery from the operation took a long time, with various doses of antibiotics and regular visits to the nurse at my GP surgery to clean the wound and attend to the infection. It took some five months for the wound to heal, following numerous visits to my GP and some gloomy late night A&E visits to doctors at the Royal Infirmary. For what seemed like a long time, I was lethargic, lost my appetite and lost about a stone in weight. It took about a year to return to my pre-operation levels of energy.
Early in 2016, following the operation, I had my first appointment with an oncologist, Lucy Wall, part of the NET Multidisciplinary Team at the Western General Hospital. She confirmed that I had well-differentiated (i.e. slow growing) NETs and that I had Stage 4 (T4 - small bowel primary; N1 - lymph nodes; M1 - liver metastases) - bad - and Grade 1 - good - cancer. There were cystic lesions in my liver and disease in my retroperitoneal lymph nodes.
Lucy Wall recommended immediate treatment of a monthly injection of a somatostatin analogue, Octreotide, a serotonin hormone which reduces the rate of growth and controls the symptoms. She also suggested I contacted a local support group, the Ann Edgar Trust, and gave me the number of the local Coordinator.
It took me about 2 months after seeing Lucy Wall to contact the support group. I plucked up the courage and arranged to meet with one of the Trustees and ‘NET Natter Coordinator’, Margaret Boe, and her husband, Norman, the patient, for a coffee. That was totally revolutionary for me in terms of how I was feeling about my diagnosis. Norman told me he had been living with NETs for 9 years and looked healthy and well and was even able to joke about his illness. It was like therapy. I was subsequently invited to the local NET Natter meetings and met a number of other patients with the same condition, and was able to share knowledge and experiences with them.
In late 2016 I was invited to join the Trust’s Board of Trustees, by Linda Story, the then Chair. Since then I’ve been privileged to help the Trust fundraise, disseminate their message to others and organise information days for patients, families and carers around Scotland. Some of us Trustees also host a stand at the Western General Hospital every two months for the specialised NET clinics that are held there (well, in pre-Covid days that is). This was always welcomed by patients and healthcare staff as we’re able to chat to people as they are waiting for their scan results and as they leave the clinic with their
It has been rewarding, inspiring and humbling to meet so many other people who are living with this condition and hearing their stories.
So, back to my own treatment since then.
In 2017, following my six-monthly routine scans, my consultant, Mark Strachan, phoned to say that some of my tumours were showing growth. Whilst it was nothing to be alarmed about, he said, he was going to put me forward for Radionuclide Therapy (PRRT - Peptide Receptor Radionuclide Therapy). He told me that this treatment was fairly new and had demonstrated very positive results from other patients. It could slow down the tumour growth and reduce some of the symptoms the tumours cause in certain patients. He said there was a chance I could get it done at the cancer hospital in Glasgow, the Beatson, which was trialling this treatment for the first time. I knew another patient who had the treatment in London - not ideal when the treatment is administered over the course of some 8 months at two-monthly intervals and you live in Scotland. Plus you have to self-isolate when you are discharged because of radiation contamination.
Mark Strachan called me some three months after that conversation, and told me that he’d finally got funding from the Lothian Health Board for my treatment in Glasgow. I would be under the Consultant there, Nick Reed. I met with Nick Reed in November 2017 and he outlined a time-table for my treatment over the following 8 months. The treatment consisted of an intravenous infusion over 4 separate sessions and I was scheduled to start the first treatment in December. My main concern about this timetable was that I had planned a trip to Hong Kong the following February for my nephew’s wedding (at the time the second treatment was due). I remember Nick Reed shaking his head when I told him (and me thinking, oh no, I’m going to have to cancel this trip) but he agreed to delay the second treatment by three weeks. I didn’t even consider that I might not have been healthy enough to endure a long-haul flight following my first treatment…
So, the PRRT treatment began that December 2017. When I first arrived at the ward in the Beatson, it looked eerie and very quiet. Not at all like the bustling hospitals I was used to. I later found out that I was the only patient there as the treatment was so new for them. The room itself was bare and daunting - it had a lead shielding wall to prevent radiation transmission, a small bed and tiny television.
The treatment itself was painless and lasted some 5 hours (with preparation, 30 mins for the infusion and then 3 hours for the amino acids). The staff were warm, friendly and funny and my only complaint was the food. When I was offered the evening meal I told the nurse I didn’t eat meat. She said “what, not even a wee bit of chicken?” I laughed and declined the offer. I walked out of there the next day, following my scan, feeling fine. I had few after effects from the treatment as a whole, apart from fatigue and slight nausea. I had to have blood tests every two weeks in between the treatments and I completed the treatment in June 2018.
Since then, my 2019 and 2020 scans have been good. There has been no progression so far and indeed my tumours are the same size or smaller than the previous scans. I live an almost normal life, eat more or less what I want, drink small amounts of alcohol, and am very lucky to have a great medical team at the Western General who I know I can call on any time the going gets tough. We even have our own specialist nurse here in Edinburgh, Katie Gibson.
So far so good. There are some days when I don’t feel 100% - mainly tummy pain and bloating and the fatigue so common to cancer patients. Sleep and paracetamol seem to do the trick. Oh, and the monthly octreotide injections, of course, keep the symptoms at bay.
I have no idea what the future holds, but I’m cautiously optimistic - for the development of new treatments, drugs, therapies and improved surgical techniques. Fingers crossed.