No cancer patient should be seen as collateral damage after a clinical procedure which diagnoses otherwise unexpected cancer.
That is what happens with most uterine leiomyosarcoma and some other gynaecological sarcoma diagnoses. These patients are among the worst treated cancer patients because not only are they usually diagnosed after radical surgery, many are subjected to inappropriate adjuvant radiotherapy with consequential long term side effects, and some are given adjuvant chemotherapy which has no evidence of benefit – except perhaps to assuage the guilt of their gynaecologist.
The gynaecology community has been challenged over these issues yet takes few steps to try to answer the problems. In the UK we are moving forward by requiring all these patients to be referred for joint care at diagnosis by a specialist sarcoma team. Hopefully this will reduce the burden of adjuvant therapy, improve follow-up and open up access to appropriate new sarcoma treatments. This has met consistent resistance but the NHS is enforcing it. Elsewhere in the world it does not of course apply.
Gynae sarcomas account for less than 1% of all gynae cancers. Many are hidden by uterine fibroids and are only discovered after surgery. Sometimes that surgery breaks up fibroids and distributes sarcoma cells around. As far as gynaecologists are concerned that is ‘tough luck’, nothing they could have done better, disease spreads, patient dies (eventually), collateral damage.
Where there are problems in healthcare there is usually research. Around gynae sarcomas the only research is with drugs for post-operative adjuvant therapy or advanced disease, valuable but not enough and nothing yet found to make a significant difference. Gynae and sarcoma specialists collaborate in these studies. There is no research into trying to identify a biomarker from blood or imaging to try and achieve a diagnosis before surgery where fibroids are concerned. There must be other ideas. No-one is ‘thinking outside the box’. Sarcoma clinicians cannot do that research, they don’t see the patients until they are already collateral damage.
I first met gynae sarcoma patients online in email support lists. I have known several personally and I know some survivors. Of course for some the journey has been supported by good and caring clinicians and its not all bad news. But it is a hidden issue, no-one talks about it. There are so few of these patients to start with that creating a campaign has been impossible. We need to energise this in different ways, its not enough just to be shouting from the sidelines.
The first step is for healthcare systems to openly recognise this problem. In the UK we are slowly moving forward. The NHS is taking steps because of pressure from the sarcoma community. NICE needs to recognise that it has failed these patients. NIHR and other research funders should identify and fund a priority. NCRI should be encouraging researchers. Women’s cancer advocates need to wake up to this challenge. But that is just the UK.
Lets care about collateral damage, research could solve this.