Supporting the

Neuroendocrine Cancer Community


Name: Jane

Since my diagnosis seven years ago, after a long search for the reason for my pain, I have become a faithful diary writer, everything from what I eat – to see if it gives me an ‘episode’. Lanreotide injection dates so I know I have had 98, a party might be in order after 100! What treatments and when, and even the size of tumours in the various locations, and the changes, which has been very useful and I have been able to quote these back to the various consultants I have seen over the years if necessary. I reckon I have the most invested!

It was at a hospital event for neuroendocrine cancer patients at the Royal Free when a consultant who carries out research on NENs said that better-informed patients have better outcomes. That resonated with me, hence the diary keeping and my thinking that I have the most invested in my treatment and how I live with cancer.

So before writing this, I looked back through some of these diaries and it brought so much back. Abject pain so often, waking up feeling I was in a vice. Since my CNS put me in touch with palliative care before I started chemo last year, this is not now my primary problem, and I wish it had been suggested many moons ago!

Regarding decisions, there was one occasion over four years ago when I was given nine options and asked to choose. The options ranged from increasing Lanreotide to three weekly, sunitinib, everolimus, captem, another couple of chemo drugs or PRRT , or surgery to remove ovaries where new metastases had occurred.

I had not expected so many options and was glad I had already read up on most of them to know the side effects, possible outcomes, and efficacy. Especially as I cannot imagine what it would be like to choose had I not even heard of the options. That would be nigh on impossible.

My thinking was I would be a good candidate for PRRT, it had recently come back onto the NICE guidelines in England after being unavailable for a few years. I was relatively fit and to get the most benefit now rather than keeping it in my back pocket. I knew it would be over the best part of a year but with periods in between to recover and enjoy life. As it turned out it worked well for me, I had a reduction in tumours, it was the least troublesome of treatments and I tolerated it very well, my bloods improved between each cycle and I am happy it was a good choice. I did then go on to have the removal of my ovaries and increased Lanreotide to 3 weekly anyway. PRRT didn’t really interfere with much of what I wanted to do at all.

The other occasion I had a choice was more recently this year, I had had some progression and 6 chemo cycles of Captem were suggested, over 6 months. I found this more of a slog with the number of tablets, fatigue, lack of appetite, and taste. There was some reduction, especially in the first three months, So when it came to the offer of three more cycles I weighed up whether I wanted to continue. I had found chemo through the winter wasn’t as bad as it might be during the summer months, I could just sort of hibernate! Strangely being immuno-compromised, avoiding people and germs seemed easier in the winter months. The thought of 3 more months of lack of appetite, and forcing myself to eat would not be so beneficial for my general health.

There was also the issue that I had not seen my daughter who lives abroad, (as she would have to fly to visit), for seven months already. We had a family celebration arranged to fit around the 6six months of chemo and the thought of that not taking place would have been too upsetting or attending fatigued, no appetite etc. wasn’t something I would look forward to. I must not forget that chemo puts your life on hold and that affects partners too. My husband had gone through this chemo too really as regards the rigid meal times, eating solely what I could fancy, six months was enough. I said I needed a rest.

Three months later I am still stable disease with no growth so again I am happy with the decision I made even if it might seem cavalier. There is the possibility at a future date I believe.

I feel cancer isn’t just the physical aspects it’s being happy in yourself, staying positive, and living as best you can.

Jane Aylott – July 2023