I was diagnosed in late summer 2014, when I experienced some sharp and persistent abdominal pain. This was initially diagnosed as a bowel problem, and was prescribed anitobiotics. When it did not respond to treatment, I was referred to RSCH Guildford for further investigation. A CT scan showed a massive stomach tumour, described as a suspected “Gastro Intestinal Stromal Tumour”.
As I had never heard of this, but noted the word “tumour”, I got onto the net to learn more – and found information on the cancer sites. Any cancer diagnosis is scary, so I set about setting up support systems and as much further information as I could. From the GIST Cancer UK website (and others), I signed up to our useful email group, and also broke the news to family and selected friends.
Further tests confirmed that it was a GIST, assessed at 26x19cm. As this was too large for surgery, I was put onto an initial course of imatinib to shrink it, with 3-month scans and oncologist meetings to monitor progress. I was apprehensive about what I had heard of the possible side-effects of imatinib, but found that I could tolerate it quite easily, with only minor issues.
The immediate decision facing me was whether I should request transfer to a specialist centre, as advised on our website. However, RSCH assured me that although not GIST specialists, they did have some experience with it, had specialist expertise in stomach cancers, and worked closely with the Marsden. As I had been impressed by the speed with which they responded after the initial scan, I decided to stay with them.
When shrinkage stopped after 9 months, it was time for surgery – but before taking any decision, I asked for a second opinion from a specialist centre (UCLH, Euston) where I saw Dr Beatrice Seddon. I was impressed by the thoroughness of her preparation and how attentively she listened, so I then transferred ongoing care to her, and scheduled surgery at the Royal Free for February 2016. This, I was told, would include removal of my stomach, spleen, and possibly more.
I had of course been very worried about the surgery and implications of life with no stomach, but in practice the delay between diagnosis and surgery had given me time to prepare myself mentally – including some serious reflections on mortality. I also found great value in the support of family and friends, which showed the value of having been open about my condition from the start.
In the end, I found the surgery experience not nearly as traumatic as expected, and the care at Royal Free excellent. I also found that the return to eating much easier than described in our guidelines, or elsewhere. I had expected to be on a gradual transition from a liquid diet, to semi-solids, to “soft” solids before the full range of food. Instead, after a week of “nil by mouth” in hospital (not even water), I was immediately able to start eating even soft solids (mash, pasta, fish, vegetables). Within a week of discharge, I was able to take short walks about the neighbourhood and some local driving. Quite soon, I found that my eating was almost back to normal, as long as I divided my main meal into two sittings, chewed well, and ate slowly.
Standard guidelines for life without a stomach include warnings of the possibility of “dumping” and diarrhoea – but I’ve avoided dumping entirely, and although bowel movements can be variable, they never quite amount to diarrhoea. I did develop a mild aversion (not quite intolerance) to milk and dairy products, but I have no problem with “lactose-free milk”.
A massive GIST and loss of the stomach are of course life-changing – but looking back four years after diagnosis, two after surgery, life does not in fact feel dramatically worse, just different. I’ve been lucky of course. I do have some side-effects from either the medication or surgery, but these are pretty mild and not disabling: fatigue and loss of energy, puffiness and watering around the eyes, cracked lips in winter, very occasional muscle cramps, some oddities with bowel movements – but it’s certainly been much easier than at first I feared. For this, I am grateful for the extensive support and information I’ve received from GIST Cancer UK, excellent care by NHS staff and infrastructure – and loving care from family and friends.
I’m satisfied with the important choices I’ve made along the way:
- To learn as much as I could
- To be open with friends and family
- To participate actively with GIST Cancer UK
- To stay with Royal Surrey in Guildford initially
- To transfer to UCLH/Royal Free later.
I firmly believe that these were right for me, and helped me to cope and recover. However, we are all different in our responses: others may find that different choices work for them.
UPDATE, Jan 2023:
The story above was written some years ago. Now, seven years after surgery, I’m still doing pretty well. Side effects of course continue, but some are easing – while others are getting a little more difficult (not really too challenging, but irritating. This applies particularly to eye difficulties, and heartburn). One new rare side effect I’ve had to come to terms with, is an occasional problem with bone pain. This was a result of vitamin D deficiency – itself a result of prolonged use of imatinib. However, once the cause of the problem had been identified, we were easily able to rectify it with vitamin C/D tablets, which I now take daily. In all other respects, life continues much as before.
I continue to be grateful to GISTCancer UK for the support and information I found with them in the beginning, and am pleased to now pay it back where I can. I’m particularly involved with direct patient support, including active participation on their Listserv email forum and telephone helpline, and always welcome the chance to meet with patients and hear their concerns at our regular patient information days. I’ve also been privileged to represent GCUK at local and international conferences, and look forward to joining a New Horizons/SPAGN combined conference in Dublin later this year.
COVID clinical trial.
COVID has impacted our lives in so many ways. One of the impacts on mine was quite remarkable. When COVID first struck, there were concerns that along with other cancers, GIST patients could be especially vulnerable. Accordingly, there came a time when I was notified that I was deemed to be at risk, and should be shielding. I complied, and spent an extended time barely leaving the house. Then, when the vaccine rollout began, there was some uncertainty about how effective they might be for people who are clinically vulnerable. Then on Boxing Day 2021, I came across a news report about a new approach by Astra Zeneca. In addition to their well known and effective vaccine, they had developed laboratory grown antibodies, for direct injection into patients. They were looking to sign up participants for a clinical trial. I immediately replied and was accepted.
Early in January I had that injection, and for the rest of the year made several trips up to UCLH for monitoring visits. Initially I did not know if I’d had the antibodies or the placebo, but was told that when I was offered my first vaccine, I should tell the trial administrators, and they would unblind me. I could then decide if I wanted to accept the vaccine, and if I wanted to continue on the trial. In the end, I had confirmation that I had the antibody, and also accepted the vaccine. Along wthith most of the rest of the population, I’ve now had the second vaccine, and also two booster doses. On top of that, at the conclusion of the trial, I was invited to enrol for a follow-up study to check the effectiveness of a second dose – which I’ve now had. The net result is that I’ve now had a total of four vaccines (with an invitation for another), and two doses of antibodies direcly injected. Two years on the trial have been quite an adventure, with numerous interesting tales along the way. The regular monitoring has on a few occasions thrown up useful information unrelated to COVID that I would otherwise not have been aware of, for which I’ve been grateful. I’ve been really pleased to have had the opportunity.
Best of all – I remain completely COVID free.
a panel discusson on living with
Terry W.