Speaking to people affected by cancer on a daily basis I now hear more frequently about a ‘terminal diagnosis.’ There is a lot of confusion around this wording so for the readers I have taken some quotes from the wonderful Marie Curie. “A terminal illness is a disease or condition which can’t be cured and is likely to lead to someone’s death. It’s sometimes called a life-limiting illness. People with a terminal illness may live for days, weeks, months or sometimes years. It can be difficult for doctors to predict how long someone will live for. This can depend on their diagnosis and any treatments they may be receiving.”
I spoke recently to the incredible Matthew Dons who is currently living and receiving some of his treatment in Japan. On all counts extremely different to the UK and US, as you might imagine! His story was so different to anything I had heard before, I asked Matthew if he would share with us his own experiences. Which he has done very kindly below.
“Five years ago my life, as I had known it, was decimated by cancer. I was diagnosed with stage 4, terminal cancer. No warning. Just wham, you’re about to die! The cancer was in my sigmoid colon, my liver and lots of lymph nodes. But worst of all, it was in the membrane that covers your abdominal organs, the peritoneum. When cancer is your peritoneum life expectancy is measured in months, not years. Treatment outcomes are “abysmal”, according to the medical literature. Aged 36, fit and healthy, a terminal cancer diagnosis was the last thing I’d ever expected.
If the cancer hadn’t spread to my peritoneum, I’d have had a chance of living a few years, maybe 5 or more. A small chance, but a real chance nonetheless because I was young, fit and healthy. (except for having terminal cancer…) But the cancer was there and a realistic life expectancy was 7-9 months – that’s with surgery and chemo. So how on Earth am I writing this five years later, in 2021? And why have my medical reports for the past 19 months read “No evidence of disease”?(NED)
The answer is I’ve continuously been fighting hard to find better treatment options when it seemed there were none. I’ve spent hundreds of hours reading scientific papers and medical books. I’ve spoken to the best surgeons, oncologists, radiologists and immunotherapists I could find. And I’ve made a startling discovery:-
Living for a long time with stage 4 cancer, and sometimes even curing it, depends on four key factors:
1. Receiving the newest possible treatments.
2. The condition of your immune system.
3. The total amount of treatment you have.
4. The variety of treatments you have – more is much, much better.
These factors are tightly interlinked. For example, newer treatments tend to cause less damage to your immune system. And if your immune system is in a good condition you can often stand more treatment. So exactly how do you find options when none seem to exist?
Well, the first step is to take everything your doctors says with a massive pinch of salt, especially when he or she says something isn’t possible or wouldn’t work for you. Be extremely sceptical. Focus on the science and the data. Seek out specialists who are experts in their field. For example, my immunotherapist is also a scientist, and is considered to be the father of Japanese immunotherapy. He didn’t just write the book on the treatments I’ve been having, he actually developed them.
Get into the habit of translating everything doctors say. If a surgeon tells you “Sadly your liver tumours are inoperable” it really means “I can’t operate on your liver at this time, with this team, at this hospital”. Maybe another surgeon could. Or maybe this surgeon can operate on you if you get a good response from another treatment. If you are in the UK, receiving NHS treatment, your surgeon may work one day a week at a private hospital where they could have more freedom. When an oncologist says “Sorry, there are no more medicines to try.” it just means “I don’t know of any more drugs for you, but maybe you can find something elsewhere.”
Five action steps you can take right now
1. Get studying! There are many great online courses about cancer and cancer treatments.The most useful ones are aimed at university students, or non-specialists, such as general doctors who want a good overview of the lates cancer therapies. Take a look at http://www.futurelearn.com which has free online cancer courses 2-30 hours long.
2. Contact organisations that support cancer patients. You’ll be surprised at the range of free support available for you and your family. This can include home visits, financial help, telephone counselling, legal help and just about anything else you can imagine. Many of the organisations publish practical information on cancer, cancer treatments and living with cancer. The guides from MacMillan Cancer Support in the UK are outstanding. Always get the printed versions so you can highlight parts and take them with you when you see medical specialists.
3. Start crowdfunding right now. Even if you’re in a country with Universal Healthcare, cancer gets very expensive very quickly. Also, being able to pay for the best private treatment, or being able to travel for treatment abroad is a real game-changer.
4. Join online cancer groups including cancer Facebook groups and online cancer discussion forums. Join the most specific groups you can find. For example there are groups for patients with certain metastasis such as “Stage 4 breast cancer with bone mets”. Use Twitter to follow cancer hospitals, individual doctors, cancer conferences and cancer organisations. That way you’ll always get the most up-to-date news about the latest treatments and clinical trials.
5. Keep organised copies of all your medical notes and get your scans on DVD. It’s so useful to be able to refer back to your notes when you have a meeting with your doctor. Also, having your data is very important when you look for private care, clinical trials or special treatments.”
I feel really privileged to share this incredible story and would like to thank Matthew for sharing it with us. Despite my experiences I have yet to hear from anyone moving countries to obtain the best possible treatment they can. This also highlights the recent hot topics of health inequalities and limited availability. If you would like to hear more from Matthew in his own words you can in this incredible video below. Also you can donate to his funding page here.
Thank you Chris for sharing Matthew”‘s story and really helpful advice. We should all know these tips. Useful definition of terminal to adopt too.
Thanks so much for your comments. Probably like you I hear the words terminal cancer used a lot. It was used in my own case but here I am 14 years later. I believe most peoples perception is quite different. This is why I wanted to start that piece with a definition.
Matthews story is indeed a very different one to many I have heard. Which is why I wanted to share it. Many would also not think about looking at options outside the UK. I still don’t feel that there is enough awareness of this issue.
Very best as always, Chris
I went to different countries to get better treatment. If anyone wants, I can send them address of web pages that detail where I went, for what, and outcome.
Would be delighted to help, but what I really wanted to get over is that Matthew was not unusual in going abroad for cancer treatment – but we need to tell people in Britain that the
NHS is NOT the best, and to look out for opportunities for better treatment abroad.
One of my best friends was married to a top surgeon (household name, on TV etc). He took one look at facilities at The Royal Marsden and sent her off to their holiday home in France for her six months treatment.
So yes, let’s gently scotch this statement that “The NHS is the envy of the world”. I don’t know one country that has followed its example, and today the only major teaching hospital I know that regularly has trainee doctors visiting from abroad (obviously profitable for NHS) is The Royal Brompton (never saw a foreign doctor at Marsden despite all its boasting).
Thank you so much for sharing your own views and experiences. Most people don’t even think beyond the first offer of treatment they receive. Which is why I was delighted to share Matthews story. I believe it is a travesty that this sort of information is not generally available. The #NHS tends to stay within their own service, but these days as we are such a connected world patients should be told about other possibilities.
There is still so much inequality within the sector which seems to be getting worse.
Very best to you and your family, Chris
Thank you for sharing this article.. very helpful and indeed a good read about Cancer Diagnosis.. more power and stay healthy everyone! I am very much thankful to RAFI Eduardo J. Aboitiz Cancer Center for helping me survive..