I mentioned in my first blog post that the only patient experience narratives of taking Rucaparib I had found were on US websites. It's been interesting making forays into this world as it is really quite different from the online support world that I'm familiar with - the Macmillan online community.
In Macmillan world, there is a lot of moral support. I am a community champion - a volunteer with some training and undertaking a role to support the moderators, making sure everyone who posts in the community receives a reply and signposting to relevant community groups. I also support the womb cancer community. We hear from a lot of women who are newly diagnosed and are understandably very frightened so collectively we sympathise, reassure, answer questions and suggest ways to cope. It's very human and very personal and I have lost count of the number of women who have said that they could not have got through the treatment without the community support.
There's an element of that in the US site I have been exploring at inspire.com. What strikes me though are two things. The first is how well informed are the users of this site, discussing in detail different chemo regimes, new trials, immunotherapy, research into carcinogenesis and who is the best doctor for which kind of treatment. This may reflect the difference between womb and ovarian; there is very little research into womb cancer so there is very little to discuss. That's partly because most women with womb cancer are diagnosed early and go on to achieve a full cure with just surgery. CRUK data show that 78% of women diagnosed with womb cancer survive over five years compared to 46% in ovarian cancer. So it is perhaps not surprising that research effort is concentrated in the more lethal cancer.
The second thing is the evidence of the difference between our health systems. The Macmillan online womb cancer group spends a lot of time supporting women through NHS waiting times, which anyone who has been through diagnosis will know is one of the most difficult parts of the cancer journey. The anxiety is indescribable. Women routinely wait over two weeks for tests having been referred for cancer investigation in the NHS. They then face another wait for diagnosis and then for treatment. It can take over six weeks from the first mention of "cancer" to starting treatment - and that's the best case scenario in which there are no additional delays such as lost tests, missing letters or cancelled surgery. Over on the inspire site I have seen women sympathise over a day's wait for a scan result.
The darker side is discussions on the US sites that simply do not figure for NHS patients: what will insurers pay for? One recent discussion talked about a medicine taken as a solution that was helpful in coping with side effects. One woman advised another that her insurers would not cover the commercial preparation - but if her doctor ordered the components of this treatment separately and had the hospital pharmacy make it up then it was funded.
I wouldn't swap the NHS for the US system. But I wish our current government would give the NHS the funding it needs and reduce the waiting times not just for women with womb cancer but for everyone. Living in fear is no fun.
