“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

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?