“Surviving Sarcoma” – Leeds Event, July 2019.

  • On Wednesday this past week, I was up in Leeds, representing GIST Support UK at a “Sarcoma Survivorship” event, hosted by the specialist nurses from St James hospital sarcoma unit – one of the specialist sarcoma units endorsed by NHS England for the treatment of sarcomas.

“Sarcoma” is a group of rare cancers, alongside the more familiar carcinomas, lymphomas, melanomas and others. The sarcoma group in turn, includes a wide range of different cancers, including GIST  “GastroIntestinal Stromal Tumour”, which has been part of my life the past five years. So, I was there to contribute – and also to learn.  I offer now some thoughts, on what I learned, or had not previously fully understood.

After cancer, life does not return to “normal”.

Right at the very beginning, I was caught out, in an opening ice-breaker quiz. One question asked something like, “Suppose you have been treated for cancer for some time, and the day comes when your doctor tells you that you are now NED (No evidence of disease), you no longer need treatment, and life can return to normal. Should you be pleased?”

My response was, “Yes of course. Who wouldn’t be pleased that treatment is no longer needed?”, but that completely missed the point. Of course it’s good to be NED – but life after cancer can never go back to “normal”.  There will always be some risk of recurrence, so regular physical monitoring may be required, and there will always be some emotional impact remaining.

For this reason, one entire presentation was devoted to a program run by St James for continuing care, after the end of formal “treatment” for cancer. Similarly, several speakers stressed that they exist to serve anyone who has been affected by cancer – ever, now or in the past.

Cancer Care Must Be Holistic.

It was notable that in the entire program, only one contribution dealt with physical care – and that was by a specialist sarcoma physiotherapist, on the importance of regular exercise (which contributes to mental health h as well as physical). Most of the remaining speakers, from Leeds Cancer Support, Sarcoma UK, Maggie’s Centre (and myself), spoke primarily about things like emotional support, quality of life interventions – and financial planning (which is important to ease anxiety).

Carers Need Support, Too.

As patients, we can usually access support and services from a wide range of specialists: GP’s, oncologists, surgeons, nurses, pharmacists and more – as well as our carers (usually, family and friends). Who can our carers turn to for their own care? They too, carry a heavy burden of stress, and do not have any obvious sources of help.

Here too, the speakers all pointed out clearly that their services are available not only to patients themselves, but also to their family or other carers. Even the opening quiz, right at the beginning, included this as a question: “Can patients’ family members who are finding things hard, get help from a sarcoma nurse?” Answer: Yes – they are there to help family as well as patients.

Specialist  Nurses are Awesome!

The evening reminded me once again, of just how valuable it is to have specialist nurses to draw on, especially when first diagnosed. I clearly recall how very thankful I was right at the beginning of my journey, to have access to two superb nurses, who were constantly present to offer reassurance and support, and information to guide me through the confusing and bewildering steps I was going through as I was beginning to navigate my way through the process and physical environment.  It was obvious to me, that St James have an equally valuable team of nurses available, both within the sarcoma centre, and also working in the various satellite support units.

GIST Support UK – Mission Accomplished.

I was there primarily to represent and promote our own charity, with a display table of our usual posters and booklets. I spoke with several GIST patients, some of whom had never heard of us, but also with some who are already on our Listserv email group and have attended a patients’ meeting. Others took leaflets or booklets without talking directly with me. I left some of the remaing flyers for our own Leeds meeting with the event organiser, who is hoping to attend herself, and promised to display and distribute them. I think we should have a good local turnout for our patients information day on Octover 4th.

In addition, I delivered a short presentation on my own GIST journey, which (as far as I can tell), was well received. Certainly, I had some good direct feedback – one person described it as “amazing!” My slides (in Power Point format) can be accessed by following this link:

My GIST Journey

Three Years With No Stomach.

Three years ago today, I was in the Royal Free Hospital for surgery to remove a massive GIST (“GastroIntestinal Stromal Tumour”), and with it, all of my stomach and spleen.  So – how has life been, with no stomach?

Prior to surgery, I had been warned that I would have to make substantial adjustments to how I ate (and drank). I was told, on all the websites I checked and on-line support forums. that I would be able to eat adequately, provided that I took only small meals at a time – preferably, six small meals instead of the usual three a day, I was also advised that it would be helpful to have a steady supply of something like nuts to nibble on between meals. Two different nutritionists suggested I should avoid drinking anything at all at the same time as taking my meals, and not to drink anything fizzy – no  carbonated drinks (eg, coke, or mixers), and no beer.  I was also warned that initially at least, there would have to be a gradual adjustment to eating at all – starting with liquid foods, going on to semi-liquids like smoothies, progressing slowly to soft foods, and taking time to get to the full range of conventional solids.

In addition, the standard advice is that after a gastrectomy, there is a real risk of something called the dreaded “dumping” syndrome if ever I ate too much, or too quickly.

In practice, it’s been much easier than that.

The first surprise was that the first week after surgery was even harsher tha expected. Instead of starting on a liquid diet, I was on nothing at all – “nil by mouth”. I was allowed not even water: the closest I could get, was a wet sponge to dampen my lips. Later, earnest entreaties got me permission to take some water into my mouth, provided that I spat it out without swallowing.  However, once I was allowed to start drinking from the eighth day, to my surprise I was told that I could immediately begin eating “soft” foods – and that did not mean semi-liquids, but included things like pasta, a bean and tuna casserole, mashed potatoes and scrambled eggs.

After returning home on the tenth day following surgery, I initially avoided things like toast and roast potatoes, but  it didn’t take long before I was eating the full range of foods.  I started out trying scrupulously to stick to the recommended six small meals a day, but soon found this to be impractical. Instead, on the basis that my usual breakfast and supper are in any case small meals, all I did was adjust my midday lunch, eating half at lunch time, and the rest at mid-afternoon.

I started out avoiding all drinks together with meals, and avoiding fizzy drinks completely. In time however, I found that this precaution was unnecessary. As long as I drink slowly and not too much at a time, I now find that I can easily take any fizzy drinks I like, and also enjoy a drink with meals.  With time, I have even found that on occasion I can eat quite a substantial meal at a time. Although when at home I divide my usual meal into two portions, when away from home and this is not feasible, I can eat something close to a conventional full portion (but still avoid having three courses).

I have also been fortunate in never having experienced anything like the dreaded “dumping” syndrome.  The only problem I’ve yet experienced on the rare occasions when I’ve eaten more than I can cope with, has been a lttle mild discomfort. All I’ve needed to at those times, has been to lie down  and rest for just a few minutes (no more) and that has invariably cleared it.

Other than the small adjustment I’ve made to eating, I have continued with daily imatinib tablets (a form of oral chemotherapy, taken with my breakfast) to guard against a recurrence. Because of the sheer size of my tumour (26cm x 19cm), I’ve been told I will likely remain on the medication for life, Here too, I’ve been fortunate. Some people have difficulty just tolerating the drug, others experience some nasty side -effects. I’ve never had any difficulty taking it, and although I do have a range of side-effects, these are fairly mild and do not particularly interfere with my daily routine.

So, my experience has been quite different to the warnings given in the relevant websites (GIST SupportUK and others). Does this imply that the standard information is flawed – or am I just an “anomaly”, as one respected GIST colleague has said to me? I don’t know – but I do suggest that for anyone else awaiting a gastrectomy, take note of the standard advice, make all the preparations and adjustments recommended.  Understand though, that we all respond differently to surgery and to medicaion. Your experience may turn out to be a pleasant surprise, as it has been to me,.


A “Trojan Horse” New Cancer Treatment

From The Independent:

‘Trojan horse’ cancer drug can extend survival where other treatments fail, trials show

Ovarian cancer among the types which responded to tisotumab vedotin treatment, though best effects in bowel and cervical forms
Ovarian cancer among the types which responded to tisotumab vedotin treatment, though best effects in bowel and cervical forms ( WikiMedia )

A cancer drug which uses an unprecedented “Trojan horse” approach to destroy tumours from the inside has shown promising results across six different forms of the disease.

UK researchers have hailed the results from early human tests of the drug, known as tisotumab vedotin (TV), after it stopped or shrank tumours in patients with no other options left.

The treatment combines a cancer-killing chemotherapy agent with an antibody, a biological molecule which binds to markers on the surface of cancer cells and causes the drug to be drawn inside.

The Myth of “Cancer”: Big Fleas, and Littler Fleas.

Big fleas have little fleas
upon their backs to bite ’em.
And little fleas have littler fleas
… and so, ad infinitum

-Ogden Nash

This is not to suggest that “cancer” does not exist – obviously it does, as I know very well from personal experience. However, it is a myth that “cancer” exists as a single syndrome.  A few weeks ago, I read a newspaper opinion piece by Simon Jenkins, arguing precisely this point: we should stop talking about “cancer” as a generic, and instead speak of a particular cancer.

The more I learn about cancer, with particular reference to my own variant, a GIST (GastroIintestinal Stromal Tumour), the more I am reminded of the above verse by Ogden Nash. Just as “big fleas” have “little fleas”, so “cancer” is an umbrella term for a range of sub-types: carcinomas, lymphomas, and more. Then just as “little fleas” have “littler fleas”, so these divisions in turn have smaller sub-divisions: sarcomas for instance, which I know best, include GISTs, but also bone sarcomas and other soft-tissue sarcomas.  As for “ad infinitum”, GISTs too have a range of variants, based on the specific mutations, such as the c-kit mutations Exon 11 (mine), Exon 9, Exon 13, Exon 17.  In addition, there are a range of mutations to the PDGFRA gene, collectively known as “wild type”, because they are not so easily classified, But this term is itself misleading, because “wild type” is not a single GIST type, but an umbrella term of its own.

“…… and so, ad infinitum”.

Can we now stop thinking in terms of “cancer”, and be more specific with our language?




Revolutionary New Cancer Treatment?

From “The Conversation”:

Cancer growth in the body could originate from a single cell – target it to revolutionise treatment

Cancer remains a frightening and largely incurable disease. The toxic side effects of chemotherapy and radiation make the cure often seem as bad as the ailment, and there is also the threat of recurrence and tumour spread.Cancer treatment still follows a practically medieval method of cut, burn or poison. If the growth can’t be cut out through surgery, it may be burnt away with radiation or poisoned by chemotherapy. As a result, cancer therapy remains a daunting diagnosis for patients and treatment option

Source: The Conversation