Your diagnosis madam – collateral damage

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.

Journal publishing – get rid of the pay wall

There is a situation which we, as patients, have been slow to challenge.

If I say that patients agree to enter clinical studies, which take data from patients, and reports on those studies are then published in medical journals after due review processes have taken place, and are then put on sale, I wonder if you see the problem.

If we as patients want to see the study result, review the data etc we have to pay – usually a fee around $30, sometimes more. We don’t buy because we do not have the resources. We cannot get free access because we do not belong to a body which licences access for its members through Athens or Shibboleth. So we are left with the abstract, at best. Fortunately a number of journals are Open Access, allowing anyone full access to published reports. Some also offer Open Access as a paid option but notably the High Impact journals will usually only offer Open Access if the study sponsor pays a substantial fee up front.

Patient advocates and those relying on understanding research are disadvantaged by the publications system. Some authors are generous and subject to keeping quiet about it let us have a copy of their study report. Sometimes we are able to find a print copy, take photos on a mobile phone and thereby have a reference copy, but that is getting silly isn’t it?

I started to wonder what the ethics of all this are. Patients freely enter studies, unpaid. Their data is gathered, analysed and written up under an ethical process. If it is then published and they cannot access it, is that ethical? The actual patients in that study may well get a copy of the report from the study team which might answer the direct question, but patient advocates and representatives who could use these data in their work for the benefit of patients do not have such access. Is that unethical, or just hard b***** luck?

What makes this worse of course is that patients and the public fund a lot of this research, whether through taxation or charitable giving.

We have to recognise that publishers have to earn a living and that there are various business models available to them in practical terms. We can only applaud those who have an Open Access policy.

It has to be better than this. I cannot see an easy route through but I hope someone can grasp this nettle and help patient representatives get better informed and become more effective.