This discussion was created from comments split from: Early Days on Letrozole.

Possibly one of the reasons I am here. I wasn't part of the network when I had treatment, I was well and truly over all that before I joined. As someone who didn't have an awful time, still has side effects that will stay with me but are manageable, I thought a relatively positive message might be useful. The mix of voices and experiences here are what makes the network helpful.

Thank you @Romla, that's a very interesting article. I particularly like the bits on coping and post traumatic growth. Post traumatic growth is significant to cancer diagnosis due to the potentially life threatening nature of the diagnosis. Individuals may be forced to consider their own mortality and may adapt by altering the way they relate to others, the world, and even themselves. That puts it very well. It's not the Pollyanna, all's right with the world approach, it can be immensely rewarding but it's not something you can do when depressed, fatigued and at a low ebb generally!

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-h183gwQuite 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!

I’d like to add to the list above that after all active treatment ends the vacuum we seem to enter where we have changed even though the world has not.I was distraught , lost and very low - thinking my life was over and this was before I started hormone therapy a couple of months later.There seems to be little done to check with our mental/ emotional state after getting thru surgery ,chemo and radiotherapy- you are left up to your own resources and dependent on your own resilience which is badly shaken. That to me was the big gap of which very little is written or spoken.

I think the last point is one to remember @kmakm. Often the health services offered are either not able to be offered, in the same way, in every region or may not be accessible, for a whole range of reasons, at the time they would be most effective. I didn't have a breast care nurse. I had a brilliant senior oncology nurse. Her great strength was seeing the individual not just the patient. So when not able to articulate exactly what was bothering me, she could add two and two and gave excellent advice. What's 'normal' also varies immensely - in one sense, I never left normal and in another a lot of things changed, but largely for the better. I imagine a close encounter with any mortal illness, and unwanted changes to one's body, are very likely to initiate a whole lot of thinking that may not have occurred, or occupied much time, before. Emotional counselling would seem important as a basic tool, not only when things get desperate.

Support needed from health professionals during treatment and beyond

36 Replies

arpie
Member
8 years ago
Wow! Good find, @Romla !!
Afraser
Member
8 years ago
Thank you @Romla, that's a very interesting article. I particularly like the bits on coping and post traumatic growth.

Post traumatic growth is significant to cancer diagnosis due to the potentially life threatening nature of the diagnosis. Individuals may be forced to consider their own mortality and may adapt by altering the way they relate to others, the world, and even themselves.

That puts it very well. It's not the Pollyanna, all's right with the world approach, it can be immensely rewarding but it's not something you can do when depressed, fatigued and at a low ebb generally!
Romla
Member
8 years ago
Thought you might like to know about this - just discovered today myself as is an interest of Professor Ian Olver .There is an area of oncology today looking at the matters we have been discussing called psycho- oncology and is apparently growing quite quickly.

https://en.wikipedia.org/wiki/Psycho-oncology
kmakm
Member
8 years ago
@"Patti J" I dispute it too as my sister was on it.
Flaneuse
Member
8 years ago
@Romla I'll kick one off.
Romla
Member
8 years ago
Hi all , Is a very valuable discussion above but wondering if I could suggest it be a topic in its own right instead of Early days on Letrozole as am conscious some people very keen for advice on the latter ? I digressed too so thought I’d raise it - if acceptable am very open to a header for a new one but out for a bit soon doing a Schoolies run.Happy if agreed if someone else gets it organised too.
Patti_J
Member
8 years ago
What can I say @Zoffiel? I don't want to be there either. I have no choice.
kezmusc
Member
8 years ago

I was nearly finished treatment when I first posted on here but I had been reading so much of the forum along the way.

There were posts fom a few people (some still posting some not) I had read a couple of days before chemo started that really helped me to stop thinking I was going to spend the next six months between the couch and the loo. @Afraser, yours was one of the first I read. I thought, wow, look at this lady, she has done it and kept working and doing her thing along the way. I can do the same. Those few posts gave me strength at just the right time and for that I say thank you. xoxx

I had a bit of an argument with my onc one day after being dismissed and fairly much told him they needed to speak to real people going through it. My appointments are very short these days LOL.

The only doctor that was receptive to the forum was my Radonc. She was very approachable, open minded, I valued her opinion and I really didn't care what anyone else thought apart from her by that stage.

She is from California and said that in the States a good number of doctors are now starting to crowd source on forums to get the patient perspective of side effects and emotional fallout that are common but not on the list so to speak. Sounded like a good idea to me. Easy to do and could give insight into where more study and support is needed.
Zoffiel
Member
8 years ago
That's the palliative stage. We don't want to be there.
Patti_J
Member
8 years ago
@Zoffiel. When will I get to the end of my active treatment?
@kmakm. I would really like to air my story to a breast cancer conference.
When I went to the NBCF pink ribbon breakfast in Sydney in October this year, we were i formed that Tamoxifen stopped recurrence. Well, I dispute that.