Hi Jules
I agree with your comments.
Interestingly, you mention faking some symptoms. I was told by another BC lady who isn’t in a very good place that if I wasn’t happy with not getting follow-up scans, I should fake hip pain. The hip is a good one to fake. It does seem immoral but goes to show it goes through one’s mind.
Regards.
Jeannie
This is a really interesting discussion and makes me think that it is so easy to just let things go and not be forthright about treatment. I would have thought that there is a minimal level of care that is expected - perhaps the moderator could tell us this?
I think there is a minimum level of care for diagnosis of breast cancer (thats if you get a referral) ie seen within 2 weeks of referral?
I think there needs to be a benchmark of minimum and then if we find out about the different levels of treatment we can compare as it is so easy to be isolated when told that the scan etc is not available.
Perhaps this is something the moderator could inform us about - does Breast Cancer Care know about treatment that is available - is there research on this and women’s experiences?
Would be really interested to know - it may get legalistic but hey - perhaps thats what it takes?
In reference to my previous comments - I have been told to make a complaint (even by the breast cancer nurse in the hospital where I was misdiagnosed). I have 2 solicitors who would take it forward, however, I need to gather my strength (post mastectomy 4 weeks ago)…
hi all,
such an iteresting and concerning thread. This has been something thats been on my mind constantly since the end of my treatment. I asked repeatedly about getting further tests - just had one mamm and one xray before chemo, nothing since, but was told that each case is decided on very individual basis. I’m quite young, 27, so was told that doing extensive scans and xrays would not benefit me, and as i hopefully have many many years of follow up, the long term radiation from various tests could pose a bigger risk than not being tested.
i had a couple of nodes involved, but was also told this wasn’t concerning enough to order tests. it worries me so much that something could be lurking and my senior onc has the deciding vote that i didnt need tests, and after reading about misdiagnosis it worries me even more!
my basic point is that i was assured its not about money, but about long term risk and also tests dont give a better outcome in the long run than the doctors examinations, so they have to rely on us reporting any changes… something i dont agree with AT ALL as post chemo, my body misbehaves in everyway and how are we supposed to know when pain is chemo related or when its something that needs looking into?? how do they know???
i was also told that in the US, its not that people pay for tests, but its that its much more litigatious over there, and they order tests to stave off future law suits as they can prove that everything medically possible was done.
anyways, not really sure what my entire point was just that i agreed with whoever said about campaigning, that it can be a positive way of using up energy when theres nothing more that can be done for our individual cases. i also think that dwelling on these things can be counter productive too, and i have also accepted that no test at this time can predict my future, which is all i really want when being completely honest!
best of luck to everyone with their situations…