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Many thanks
Leah (BCC)
Community & Social Media Manager
Breast Cancer Care
I think I agree with Leah in that we’re in danger of straying away from the original topic - which is a shame.
I just want to say, the reason I posted this thread in the first place is that I belong to various cancer campaign and support groups, and as a result, meet women who seem to have blind-faith in the medical system - particularly if a doctor suggests that such and such is supported by research.
Of course many cancer patients are vulnerable and desperate and want to feel they can rely on doctors/regard them as an ally. But quite often, those who just accept things, seem to get a poorer service, while those who check the research, and are more informed and assertive seem to receive a better service. While most doctors are professional and have integrity, there are so many things at work in the background that impact on decision making (like managerial interference, funding issues, what’s available in their hospital, custom etc). There are also also other factors like who funds the research, and does that effect impartiality?
By the way India, I do agree with you. There are pressures to reduce costs in Britain, and in America health is profit driven. The point you make about uninsured Black African/American women having a much worse survival rate than insured White Americans is a real indictment in my personal opinion. I’ve seen many homeless people wandering around in the US, who look like they’re at deaths door. But again this just supports the view that decisions about treatment are not necessarily based simply on medical need - and we perhaps need to be aware of these influences.
Lemongrove I entirely agree with you. Prior to my diagnosis maybe I was a little niave in thinking that the medical system will support everyone to the same degree.
What has opened my eyes is when I had my ‘secondary diagnosis’ and basically told to go away and die… Like you say I was very vunerable at the time and intially I just did that and for two days curled myself into a ball. It took my sister to get me out of that stage and then I spoke to the BCC helpline who were magnificent and also posted on here and got some very good advice and did some research.
I then decided to ‘make a fuss’ asked or a second opinion and suddenly things changed. I got to see a consultant within two days, I had more scans to double check the results of the scan I had, my initial diagnosis was overturned, my case was reviewed by the MDT twice and I have an appt to see my original Onc next week to discuss further.
I think by being assertive, doing research and knowing what questions to ask and challanging the answers given makes a very big difference to the treatment you get. I don’t necessarily think you are respected for it (if fact I think they think you are a bit of a nuisence) but to be honest I don’t care and from now on I will be very different. I will not be a ‘good patient’ anymore and will find things out and stand up for myself with both consutlants and doctors.
It can be terribly hard to be assertive when you feel so vulnerable. I remember being very worried about being seen as too pushy and had a long talk with a counsellor about it. She said that no-one had the vested interested in my body that I did. She also said that there was no point sitting at home worrying.
It is a hard balance as we do have to trust our doctors to some degree. I find if they explain their thinking and rationales then I relax much more. Sadly even in this day and age some doctors still don’t explain - but then perhaps there are some patients who really don’t want any information?
Personally I don’t know where I’d be if I hadn’t gone for a second opinion right at the point of diagnosis.
I think many women find it difficult to be assertive, whatever the context, since we’re socially conditioned to be accepting and co-operative. But when we’re being treated for BC we need to stand up for ourselves, ask lots of questions, don’t be afraid to ask for a 2nd opinion and do lots of research. Doesn’t matter if the medical professionals think you’re a pain, you’re more likely to get decent attention if they know you won’t accept everything without question.
Sarah x