I am going next week to hear my plan, am not worried about radiotherapy, but I am worried about having hormone therapy. From reading various posts about side effects, it seems one of the most common ones is losing bone density, which really worries me, as my mother suffered from osteoporosis in her spine & I have been building up my bone density for 15 years & don’t want to ruin it. I am going to ask the consultant what the chances of a reoccurence happening within five years, either with or without hormones?
I saw how much my mother suffered & lost 5" in height & I don’t want to do that.
I found out I have osteoporosis of the spine just before I was diagnosed with bc, I was supposed to be on letrozole because I am post menopausal, but my oncologist changed me to tamoxifen because of this as it is kinder on the bones.
Okay I am having hot flushes several times a day and a little bit of achy bones but it is really nothing that I can not handle and does not impact on anything I do, including playing lawn green bowls which is a passion of mine.
Like Fuertelover, I’m going in shortly to work out what my ho9rmone plane is with my doctor and I’m not sure I could feel more stressed. My family also has a history of bone issues, so I’m not entirely sure what my best bet is going to be, and I’m worried about side effects on top of everything else I’m going through at the moment. I’ve been reading a lot of posts recently - hello dr google! - and I sure as heck know I fit the symptoms, at the very least. Currently using the Predict site linked earlier and compiling a whole lot of questions to ask when I head in. Anything I need to ask? I’m woried I might miss something…
On Tam 2.5mths, noticed joints ache more, now old problem with hip and jaw returned, hardly able to chew food. Cold feet also a problem, they get freezing cold to the point of numbness. Feel palpitations, panicky, also I seem to get hypoglycemia regularly, breaking out in sweat, shaking with hunger and need to eat. Don’t think I can cope with being on Tamoxifen for 5 years.
Well girls, I think you are all very brave, & to have ms as well you are having to be very strong & I really admire you. I do hope some of your side effects get less as time goes on.
I am definitely going to ask the consultant to wotk out what happens if I take hormones or not. I have tried to do it, but unlike some of you, don’t have all the details of my tumour.
not long now, go on Wednesday to see oncologist.
Tuesday big day for my husband, he is having an eye op to remove oil from eye & cataract,let’s hope his sight is improved.
I was quite reluctant to start tamoxifen after reading all the posts on here, but agreed to give it a go. I only had a few hot flushes etc for the first month and since then have had no problems whatsoever, so it is possible to take it and be fine!
Also, I don’t know about other hormone therapies, but tamoxifen blocks oestrogen from reaching the cancer cells, it doesn’t actually change your hormone levels, as far as I understand.
Dear Meri,
Thanks for the suggestion to divide the tablet. I was thinking may be try to take one every other day. I have a bc clinic appt tomorrow will discuss with bs and nurse may be have to call oncologist too. I will try the predict test and see what it says also.
Hurrah Ruby for that appointment - at last! A quick chip in to the thread before I lose signal. However, I wanted to suggest auricular acupuncture, if you can access. It made such a huge difference to the flushes and anxiety when I first started anastrazole. I still have the odd top up session. Also I’ve just switched from anastrazole to exmestane - one week down and no nasty side effects …
Leanne, what you said about Tamoxifen stopping oestrogen from reaching the cancer cells but not actually changing the hormone levels in the body has really interested me.
My mum has tried both Letrozole and Exemestane for the past year and since starting has been suffering from severe anxiety and depression and is nearly unrecognisable from the person she used to be. She’s not been very responsive to mental health treatment and it keeps going through mine and my family’s mind that this might be down to the hormone therapy. She is still adament that she wants to carry on with hormone therapy as she has used the NHS Predict tool and the hormone therapy does appear to make statistically significant difference to her chances. However, I’ve been looking into both Letrozole and Exemestane and it appears that they are different to Tamoxifen as they actually reduce the hormone levels in the body.
So I wondered if you knew about this because you had experienced better side effects from Tamoxifen as opposed to some of the aromatase inhibitor type hormone therapies??
Snap - I’m on tamoxifen like you - have been for about 18 months - I’m lucky like you - no horrible side effects - only hot flushes ( could be my age ) feel so sorry for the others out there who are having a bad time x
