My name is Debra, I’m 51, married with 2 gorgeous sons, and work as a Digital Adoption Specialist for Marks & Spencer. In February 2021 I was diagnosed with Neuroendocrine Cancer with a Rectal Primary. Now, twelve months later, I’m delighted to have been invited to become one of Neuroendocrine Cancer UK’s Ambassadors.
This is my story:
After years of discomfort, in 2019, I was referred to a Bladder and Bowel specialist who said I was having ‘Pelvic organ collapse’. He explained my rectum was pushing down on my pelvic area causing prolapse and the cramps I was experiencing.
Soon after this appointment, I started to notice red specs in my stools so made another appointment with the GP who asked me to bring in a stool sample. They confirmed what I had suspected – it was blood.
In 2020, I was booked in for a Colonoscopy. This was not the start of the new year I wanted but I was pleased it had been arranged quickly. I watched the whole procedure on the screen. The camera passed slowly up and down my colon. The doctor explained beforehand that if she found anything that might be causing my symptoms, it could be removed safely.
Then I saw her poking and sniping at a lump that looked to me like a pink mushroom. She explained that she had found ‘a tumour-like growth’ in my rectum and that she thought it best to take a sample before attempting to remove it. She put the test tube in the sample bag with URGENT marked all over it in red bold writing. This was my first ‘red flag’ that I should have paid attention to.
I came home and a couple of hours later, I got a call from a Macmillan Navigator nurse. This was my second ‘red flag’ that I did not acknowledge: why a Macmillan nurse was calling me when I only just had the procedure? She started to explain what would happen in the next few weeks.
I wrote all the information down and can remember her asking me several times if I understood. I read back all the information she had given me, but thinking back now, I remember being calm and emotionless, and she obviously thought I didn’t understand what she was explaining. In hindsight I think I was still quite sedated from the procedure – I was numb in thought as well as body.
I needed an MRI, a CT scan and more blood test in the weeks that followed.
But 22 February 2020 is a date etched in my memory forever.
I met with the Surgeon Specialist and Navigator nurse who proceeded to give me the results of my test. The growth that was discovered in my rectum was in fact cancerous.
I managed to ask one question: is it treatable? He answered yes. That is all I wanted to hear.
I needed more scans and a biopsy to identify the type of cancer I had. After another intense few weeks with two more scans and waiting for test results my prognosis was confirmed.
I had Neuroendocrine Cancer of the Rectum and it had metastasised to my liver, which was when all the worry and concern that I was keeping a bay hit me. While it was all being explained to me …. the only words that registered were ‘Stage 4 Cancer,’ neuro something, rare cancer, not curable’.
The specialist nurse gave me the details of Neuroendocrine Cancer UK (NCUK).
Overwhelmed with fear but trying not to show it, I started to read the information on the Neuroendocrine Cancer UK website, learning as much as I could.
I wanted to be prepared, informed and confident in understanding what was happening to me. Then I discovered – the Natter Support groups on the NCUK site. I signed up for my local group with London Hammersmith. My sons and husband attended the first meeting with me, and we were all made to feel so welcome and reassured. I had so many questions but was scared and shy to ask. The following couple of sessions were quite difficult. I was an emotional wreck, but it felt right to let go in this space. I started attending other sessions around the country and began feeling a different kind of support. I had found somewhere to share my fears and emotions outside of my immediate support network.
My family and friends were a great support, but I also felt like I had to support their worries and concerns by being constantly positive. I did not have to be that way in the Natter groups. I was attending meetings at least once a week during the summer months and with the information on the website and the conversations that I was having with all the new people that I was meeting, I started to feel in control with more acceptance of my condition.
Twelve months after being diagnosed, I am now the best advocate for myself. The mets in my liver are inoperable, but treatable. The tumour in my rectum is best left alone for now, as surgery could be more life changing than I need it to be.
I started Lanreotide monthly injections in March 2021, and at the time thought this was the only treatment available.
I later learned this was not the case (thanks to the Natters). After 3 Lanreotide injections, I was recommended for PRRT (Peptide Receptor Radionuclide Therapy) – a targeted radiotherapy treatment that delivers radiation to specifically targeted cancer cells, with a minimal effect on healthy cells, and to possibly shrink some tumours too. I’ve had all 4 cycles.
For now, things look good. I’ve been told there are signs of some shrinkage, but I still have a long road ahead of me.
It has been a rollercoaster of emotions, but I am mentally in control of my cancer now. The information on the NCUK website, Nikki, Kate, my fellow Natter participants, family, and friends, along with my spiritual beliefs have got me to this point.
I have cried, laughed, felt sad and happy. But always feeling supported. I know that this cancer is something I can live with, and I plan to continue to try and live my best life.
I hope by sharing some of my experiences it will help to make someone else’s pathway feel more positive… just like the stories and invaluable information shared on NCUK and Natter groups have helped me.
Debra