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Neuroendocrine Cancer Community

Neuroendocrine Cancer Patient Story

Jun 17, 2021

Name: Deborah

Age: 60

Neuroendocrine Cancer Site: Primary to small bowel. Metastasis to liver.


Deborah’s story:

I was diagnosed in February 2016 with small bowel Neuroendocrine Cancer with liver metastasis.

For years I thought I was going through the menopause with horrific hot flushes and was given medication to help me. It didn’t work. Years later I started to have problems with my bowels. As I was working full-time this was so debilitating. I could be at the toilet 10 times a day.

My GP sent me for tests to my bowels but nothing showed up. A year later things were worse – the hot flushes were horrendous followed by more frequent visits to the toilet. My GP sent me for additional tests on my liver, bowel and also tests for IBS. The same day I was diagnosed with IBS (incorrect diagnosis) I was also told of my Neuroendocrine Cancer diagnosis (different hospitals).

At that time my world fell apart. Fortunately I was with my husband. I don’t think we spoke for a couple of minutes whilst our brains started to digest the information. We then had to go home to tell our daughter. That was one of the hardest things we’d ever had to do.

In my case, surgery was not an option as my liver NET was too large and therefore for me there is not a cure, however, there are treatments available depending on a variety of factors.

Fortunately for me I was referred to the Freeman Hospital in Newcastle upon Tyne. They now have NETS Centre of Excellence Status which is fabulous. From the first meeting with the consultants, NET Specialist Nurse and the other professionals working in the Team I felt I was so lucky. They were so knowledgeable and answered every question I asked with professionalism, respect and kindness. My treatment plan was discussed with me at every stage.

In April 2016 I was informed by the cardiologist all four of my heart valves would need to be replaced. As a result of carcinoid heart disease. As you can imagine that was a huge shock. Major heart surgery was carried out in August of the same year. I now have two mechanical and two bio prosthetic valves. At the time I was the 7th person in the world and the 3rd in the UK to have had this procedure. Once again I was under the heart team at The Freeman Hospital. Again, the surgeon was one of the best and his team were brilliant. In August this year I will be 5 years post surgery. Whoop whoop!

I have had 4 rounds of PRRT at Guy’s Hospital, a liver embolism, I visit my GP on a fortnightly basis where I receive Lanreotide injections by the health care professional although my husband will soon be administering the drug. I also take Creon which helps with malabsorption. I also have annual scans and see both the NET and Cardiologist team every 6 months.

In terms of where I am now, I have accepted to take one day at a time. There are times when I need to sleep and I listen to my body. I do find some days are better than others. I don’t analyse why I just accept it.

Do you have any useful hints and tips that you would like to share?

I am retired as is my husband and we are a close family unit with our daughter and our two miniature dashchunds Barney and Harvey. During lockdown I have kept myself busy completing crosswords, jigsaws, cooking – with help from hubby – reading and, when the sun shines, sitting in the garden. I am looking forward to meeting friends and family after the COVID restrictions lift in person rather than by phone or zoom calls.

I wish you all good luck. Remember never feel afraid to ask questions.

Oh and if you don’t already, access the Neuroendocrine Cancer UK website. It’s been invaluable to me. Also the online Neuroendocrine Cancer Natters Group offer you the chance to talk to other patients who understand what you’re going through

If you’d like to share your story, experience and advice then please join our campaign!