Vague Prognosis

FormerMember over 4 years ago

2 replies
12 subscribers
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Has anyone else struggled with getting a vague prognosis? Recently diagnosed with estrogen based breast cancer w/secondary bone cancer. Was told it was “not curable”.. I said....so it is Stage 4 then? Was told “we don’t use that terminology. It is not curable, but there are treatments that will keep you around for a good long time””. Am now receiving pain management work and 2 forms of chemo treatment. I guess my question is; is this kind of vagueness standard, or is it just me being afraid to not push too much? Sorry to sound vague myself; but this really new and scarey.

Gragon over 4 years ago

Hi ,

Just as all patients deal with things differently so do Doctors. The main difference is that the Doctors are the ones holding the knowledge. Regardless of what the doctor is comfortable saying they should be using terminology and language that you as the patient understand. Doctors are well trained in medication but are still often poorly trained in dealing with people. I'm afraid it might be up to you to "train" your doctor to use language and terminology that you understand. I have found the nurses are often much better at talking to me than the doctors are. You might want to call your cancer care nurse and get her to explain it. They are also good at letting you know about how to deal with your doctor.

It does sound like you have joined those of us in the increasing ranks of the "incurables" or "incorrigibles" as we are sometimes known. We are a rapidly growing group where new treatments have been developed which allow us to continue to live well for many years. You might want to consider joining the group "Living with incurable cancer". If you Click Here it will take you straight to the group. There are a couple of breast cancer groups which are very active and you might want to have a look at these. I am sure you will find others there who are going through the same things as you are and are coping with the same treatments.

You don't have to apologise about your feelings here. We have all been in a similar place ourselves and appreciate how confusing it all is. You have to learn a new language and medical procedures that you previously only vaguely understood. I don't have chemo but know that for those that do they tend to have a chemo kit of things that they always take with them, books, sweets, drinks, crafts, tablet and phone. You have to adapt your expectations of what you are going to do in the future. At first it seems to contract but then eventually it starts to expand again.

This group is not a bad place to start but I would suggest that the incurables and the breast cancer groups will be able to give you more support.

Wishing you all the best,

Gragon x

FormerMember over 4 years ago in reply to Gragon

Thank you so much!! This really helped me