Support needed from health professionals during treatment and beyond
This discussion was created from comments split from: Early Days on Letrozole.
Forum Discussion
Coming up to the six month mark of taking Letrozole, so I don't think I'll class myself as 'early days' for much longer.
Read this in the paper the other day. It's about PMT, and how hormones affect it.
http://www.essentialkids.com.au/health/health-wellbeing/why-are-some-women-more-affected-by-pms-than-others-20181119-h183gw
Quite interesting to read it through the experiential lens of artificial menopause and AIs/Tamoxifen. But it was the last line that got me...
"Above all, it is important to recognise the links between hormones and mental health."
It's written by a professor of psychiatry at Monash University, so someone of considerable expertise.
One of the things that makes BC survivorship difficult for many, is that our ongoing medication messes with our hormones. And that messes with our heads. At no point did any medical person I've seen mention this to me. My oncologist spoke briefly about the aching joints. My BC alluded to difficulties but didn't specify what they were. I know they have to tread the fine line of encouraging you to take it but not scaring you too much, but broadly speaking, I would have felt better if someone had had a more candid conversation with me about this. Instead I feel it's often awkwardly ignored.
It makes me recall that study about how survivors were frustrated with the lack of attention paid to their CRCI by their doctors.
I know it's difficult, and doctors can't be all things to all people. However in my limited but sadly intimate experience, BC, despite being a physical disease, is an illness of the whole person. It seems to affect so many parts of our lives. Our physical selves, our sexual selves, our emotional selves. Our identity, our femininity, our energy, our self-esteem and our cognitive function. Not everyone of course, and not all of these for everyone. But nonetheless, a lot of us.
I'd like survivorship to be draped less in a triumphant pink cloak, and instead to be supported more. Wouldn't it be good if after finishing active treatment, that long gap before you see your onc & BS again was punctuated by a standard check up with someone whose job it was to enquire about how you were managing survivorship? What's aching/itching/swollen. What your mood is like, if you're struggling with anything emotionally. How your intimate life was going. How you're managing the hot flushes, and all the myriad of other issues that crop up. And then if you needed it they could point you in the direction of someone or a service who could help.
There are so many services on offer but they're disparate and you miss out on things if you don't hear about them. Some people are pro-active about seeking help, they have no trouble speaking up. But others need prompting. You might not be able to bring yourself to raise a sexual problem, but if asked, you may be able to answer.
It'd kind of be like that six week check up after giving birth. It could be with your GP, or breast care nurse (we'd need more of those).
You're thrown into a life that is so different that it gets called 'new'. It'd be nice to have a professional check in on you and offer direction and support as required.
I know it's a pipe dream but there it is. Wishful rant over!
Read this in the paper the other day. It's about PMT, and how hormones affect it.
http://www.essentialkids.com.au/health/health-wellbeing/why-are-some-women-more-affected-by-pms-than-others-20181119-h183gw
Quite interesting to read it through the experiential lens of artificial menopause and AIs/Tamoxifen. But it was the last line that got me...
"Above all, it is important to recognise the links between hormones and mental health."
It's written by a professor of psychiatry at Monash University, so someone of considerable expertise.
One of the things that makes BC survivorship difficult for many, is that our ongoing medication messes with our hormones. And that messes with our heads. At no point did any medical person I've seen mention this to me. My oncologist spoke briefly about the aching joints. My BC alluded to difficulties but didn't specify what they were. I know they have to tread the fine line of encouraging you to take it but not scaring you too much, but broadly speaking, I would have felt better if someone had had a more candid conversation with me about this. Instead I feel it's often awkwardly ignored.
It makes me recall that study about how survivors were frustrated with the lack of attention paid to their CRCI by their doctors.
I know it's difficult, and doctors can't be all things to all people. However in my limited but sadly intimate experience, BC, despite being a physical disease, is an illness of the whole person. It seems to affect so many parts of our lives. Our physical selves, our sexual selves, our emotional selves. Our identity, our femininity, our energy, our self-esteem and our cognitive function. Not everyone of course, and not all of these for everyone. But nonetheless, a lot of us.
I'd like survivorship to be draped less in a triumphant pink cloak, and instead to be supported more. Wouldn't it be good if after finishing active treatment, that long gap before you see your onc & BS again was punctuated by a standard check up with someone whose job it was to enquire about how you were managing survivorship? What's aching/itching/swollen. What your mood is like, if you're struggling with anything emotionally. How your intimate life was going. How you're managing the hot flushes, and all the myriad of other issues that crop up. And then if you needed it they could point you in the direction of someone or a service who could help.
There are so many services on offer but they're disparate and you miss out on things if you don't hear about them. Some people are pro-active about seeking help, they have no trouble speaking up. But others need prompting. You might not be able to bring yourself to raise a sexual problem, but if asked, you may be able to answer.
It'd kind of be like that six week check up after giving birth. It could be with your GP, or breast care nurse (we'd need more of those).
You're thrown into a life that is so different that it gets called 'new'. It'd be nice to have a professional check in on you and offer direction and support as required.
I know it's a pipe dream but there it is. Wishful rant over!