Belinda - I do hope it won’t offend you or anyone else reading this, if I try to clarify something… thinking of anyone who has maybe recently been dx with secondaries.
“a secondary diagnosis puts you in an entirely different place and your treatment is deemed palliative care only”
The word “palliative” can be confusing - I know that I was confused when first dx!
Those of us with secondaries are almost always able to have some treatment that actively targets the cancer cells - often this is chemo, others include surgery, radiotherapy, hormonals, Cyberknife, RFA, Herceptin and similar targeted therapies. In a few cases this is so successful that there is no evidence of secondary disease, but I would say that this is still uncommon.
Myself I think of “palliative” as referring to the care/treatment that I hope to receive when there are no more active treatments available for my cancer, e.g. symptom relief, pain relief.
Mrs Blue, I think you highlight the complexity of this disease, and that sort of picks up on why I started this thread in the first place.
From my perspective it is wrong for celebs to talk about cures, beating cancer etc (or at the other extreme regarding a secondary diagnosis as an instant death sentence). The reason I think that is because (a) i believe that if we are ever to get a cure it is important to raise awareness amongst the general public, so that they pressure the powers that be to invest in research, and (b) because burying one’s head in the sand and hoping all will be well is not the best approach. Rather, the more patients know about BC, the more likely they are to be assertive about their treatment (and treatment after all is their best chance at survival).
I’m quite sad that this thread has gone off track somewhat, and that two people have asked for it to be closed due to acrimony, because I do think it could help some (such as Dib), tofind strength from the posts. I regret to say I did rather respond badly to a provocative comment by one person, but in my defence there have been a couple of people making repeated postings which have been very provocative, and insensitive towards those with secondaries. Needless to say I will not rise to the bait again.
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With regard to the term palliative care. I think the distinction between palliative and curative treatment is rather blurred, and all boils down to intent. In other words, someone with secondry BC may receive exactly the same treatment as someone with primary cancer (for example many doctors perform MX on those with secondary BC, because they think it prolongs survival), and many secondary patients receive the same chemo and rads, as those with a primary diagnosis. The difference is that in those with a primary diagnosis, doctors hope it will save the patients life, and in those with secondaries they hope it will prelong survival. I do agree that the term palliative gets muddled with end of life treatment, which is really about providing a peaceful exit.
Hi all
We have taken the decision to close this thread. The conversation has gone off topic and despite reminders from moderators to focus on the topic, it has progressed into a different discussion. Many people have voiced their views on this discussion and it now seems the conversation is repeating itself so we have closed this thread to avoid further disputes. Thank you to all who contributed to the discussion.
Kind regards,
Jo, Facilitator
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