I hesitate to blog on Sarcoma Awareness Week because I don’t want to become a cancer bore, but sarcoma isn’t much known about and the rarity and aggressiveness of this form of cancer means that many people are only diagnosed once the disease has spread and the ‘outcome’, as the medics cheerfully call it, is not exactly jolly.
There are about a hundred different types of sarcoma, but they fall into three main categories:
- soft-tissue sarcomas
- bone sarcomas
- Gastro-intestinal stromal tumours (GIST)
They can appear almost anywhere, inside or outside the body. Approximately 3,800 new cases are diagnosed in the U.K. every year — they make up just 1% of all cancer diagnoses.
In a way, it is this rarity that makes diagnosis difficult in the first place. The admirable sarcoma.org.uk web site provides a lot of background information, including a diagnostic pack for G.P.s with information about Lumps, Bumps and Sarcomas. You can obtain one for your own G.P. by following this link: http://sarcoma.org.uk/Awareness/ontheball. Please do so, if you can. When I first went to the Churchill Hospital, the oncologist I saw remarked that all her patients had been diagnosed ‘inadvertently’, following treatment for some other condition. That happened to me, too, so I know what it is like to be told by a non-specialist surgeon, ‘I have some bad news, I’m afraid.’ It isn’t the best way to get one’s head round the idea of a life-threatening disease.
One of the most distressing aspects of sarcoma is the way in which it affects young people. Ewing’s sarcoma is the second most common type of bone tumour in children and adolescents. The overall five-year survival rate for Ewing’s sarcoma of the bone is 68%. For extraosseous tumours, the survival rate is lower at 58%. These are not just dismal statistics, they are human lives, with so much potential and hope. If you look at the sarcoma.org.uk site, you’ll see that there aren’t many specialist centres in the U.K. for the treatment of sarcoma, and research is necessarily constrained by cost/benefit considerations.
I consider myself very blessed to have been treated at the Churchill Hospital, Oxford, and I’m grateful that, although my cancer cannot be cured, I’m still here to annoy you, months after we thought I might have ‘popped my clogs’. But I’m very conscious of those who are not so blessed: who are struggling with fear and pain and all the extra costs and challenges that cancer brings; who may not have supportive family and friends and who face an uncertain future with dread. Then there are all those involved in sarcoma care — think of the tiredness of family or friends acting as carers, doing their best in a difficult situation; the frustrations medical and nursing staff experience when they can’t help or have to watch their patients sicken and die; the going on, day after day, keeping hope alive, working for a better future.
Of course, it would be wonderful if you felt moved to donate towards sarcoma research. It would be even more wonderful if you were moved to find out more about sarcoma and spread the word, so to say. It would be most wonderful of all if you felt moved to pray for people affected by sarcoma, either as patients, carers or medical teams.
It is important to recognize that sarcoma is an illness like any other inasmuch as it doesn’t define those of us who have it. Sarcoma isn’t something we ‘battle’ or are ‘brave’ about. It is simply part of us, part of the normality of our everyday life. We live with it, knowing we’ll probably die from it (falling under ‘buses isn’t so popular nowadays) and have just got to get on with it as best we can, trying to keep as well as possible for as long as possible. I won’t pretend that sarcoma doesn’t make for some dark and lonely moments, but no one I’ve met with the disease has ever expressed anything but gratitude for the gift of life and the desire that others should be helped.
Sarcoma isn’t the worst thing that can happen to anyone. Losing hope or not caring about others is.