I was offered a new cancer patient review appointment by my Gp surgery and she referred me for the Dexa scan then. When the results came through she prescribed the alendronic acid and calcium/vit d. I didn't have calcium/vit d levels checked. I was a bit annoyed to have osteoporosis and osteopenia on top of breast cancer. The surgeon at the hospital wasn't in any hurry to refer me for the Dexa scan even though I had been on letrozole for four months by then. A Dietician said I should have my Vit D levels checked in the spring, will ask for calcium level check as well, I think.
Hi ladies, I was surprised to find myself with osteopenia ( I always called it osteopenis as it annoyed me to get it!!) Ha. If it is of any comfort to you, I did not take any calcium tablets after finding I had been prescribed double the daily dose by my gp!! Too much calcium is dangerous and apparently I should have had regular blood tests while on it but was never told or given any. When I stopped taking the hormone tablets (after a certain amount of time you are told to stop taking them) , my next dexa was completely normal and without any tablets I had gone back out of it, into the normal range and have no more dexas. I don't think it would necessarily happen that way to everyone but I thought this might relieve your worry a little that it can just return to normal. Take care all. Lily x
Thank you Sandpiper. I may try that phone number. Did you have to see the GP for alendronic acid or refer to your oncologist?
It might be worth ringing the Nurse Specialists at the Royal Osteoporosis Society on 0808 8000035 to see if there is anything more you can do to slow done your bone loss. so that you don't tip into osteoporosis. They have a very good website as well.
I spoke to a Nurse there not long after I was diagnosed with osteopenia and osteoporosis which was discovered by Dexa scan shortly after I started on letrozole. It had obviously been there before but I had no idea. The Nurse was very helpful.
I have been taking Alendronic Acid, Calcium and Vit D tablets since the summer and have not had any problems with side effects and same with the letrozole. Obviously you don't need treatment as yet as you don't have osteoporosis. Anything that you can safely do to try to avoid osteoporosis while you are on the anastrozole would be good.
So I have just had a telephone appointment with my Gp to discuss results of my latest dexa scan, the 2nd one since my dx just over 2 years ago. She said my blood tests results were fine as my vit D
levels were perfect. However my dexa scan indicated I had lost some more bone density, last time I was on the low side of normal, now I am osteopenic!! As I walk miles every week, do 2 pump classes at the gym and eat lots of all that good stuff I can only surmise it's down to the Anastrozole!!! I already take calcium tablets twice a day so I'm not sure what else I can do really.
Perhaps it depends on the health authority? I was certainly told in mine that I'd have one as a matter of course when I was prescribed letrozole ...
Hi Im new on here but i had a dexa scan last Monday. They told me that it isnt routine to get called and that i should book another in 2021. I am 11 days into letrozol and have a stiff neck so far and a little stiffness in my arm.
Ah, I expect you know more about this than I do ! I didn't realise that all bone scans aren't dexa scans, if you see what I mean ...
I'm no expert but, as I understand it, anyone being prescribed letrozole is put through a bone scan because osteoporosis is such a 'common' side-effect. I remember my consultant had mentioned it early on in my treatment, although I had to jog the system to get one done.
So sorry to hear about the hair loss ...
Many thanks for your informative post, ann-m. I've heard that, in some respects, tamoxifen is more problematic than letrazole/anastrozole ... though that's hearsay rather than informed opinion ! I obviously need to look into it further ...
Certainly sound like a good plan, I think your GP can arrange it as well as part of the fact that you are on hormone treatment.
Glad you are feeling better after the scare, thank goodness we have each other on here for the support.
I am doing ok, 5 weeks post op and not doing too badly, cant wait until Tuesday when I can finally dispose of these blooming compression stockings they are doing my head in 🙂 🙂 xxx
Ah thanks LB. makes me think I should probably chase up and ask for a two year scan then, as that makes sense to me.
All ok my friend, got over the scary re-call, which I can see on the site is a real issue for us alll. Very scary, but as always our community helped.
Hope you are recovering well my friend. Xx
When I was started on my hormone tablets I had already had a dexa scan a couple of months previous to being diagnosed withi bc, my oncologist then said that I should have it done every two years and when I went to see him for my first annual apt with him in April he said he would arrange for me to have one in July which he did. All good the Vit D and calcium tablets seem to be doing their job as my osteoporosis has not get worse.
Hope you are ok my dear?
Sending you hugs
Really interesting, about the balance of gain etc.
It’s made me think does anyone know how often you are supposed to have a dexa scan? I’m in the usual 5 years of letrazole and my initial dexa scan was ok. Should I be asking for a repeat scan at some point?
It maybe worth asking about tamoxifen as an alternative, as it is protective of bones. It works differently to letrazole/anastrozole &, so I've read, acts like HRT on bones.
I am now post menopausal & do have the option of going onto anastrozole which is similar to letrazole, but decided against it, as my risk is low, I've not had problems with side effects & I was concerned about bone health. Both the onc & surgeon were happy with this.
I have also read that in terms of stats, there is not a lot of difference overall in survival rates between the two, although the AI's are technically more effective in post menopausal women.
I've been taking Letrozole for nearly 5 months, following a double mastectomy (oestrogen-receptive cancer both sides) in August, and I've just had the results of the dexa scan which, I believe, they put all breast cancer patients on Letrozole through, given how common osteoporosis is as a side-effect.
Essentially, I'm just in the osteoporosis range (-2.8 T score on the lumbar spine: what a learning curve this has all been !) and accordingly, so long as I'm taking Letrozole, they'd want me to take biophosphanates (against osteoporosis). If I wasn't taking Letrozole, they wouldn't.
According to my consultant, I have a 2% greater chance of being alive in 5 years (aren't statistics wonderful!) if I take the Letrozole compared with if I don't. 2%, obviously, isn't that much, though someone did point out that perhaps there'd be a 10% chance of being still alive but diseased! ...
I've been reading up about biophosphanates and they don't sound particularly pleasant, and in any case I really don't want to get on that merry-go-round where you're taking one drug to balance off the side-effects of another, etc etc. As it is, I've upped my nutritional regime considerably since I was diagnosed, and will be doing another course at the Penny Brohn Centre next month.
I know it's only me who can make this decision - and my inclination at the moment is to stop taking the Letrozole - but if anyone has any comments/further information, I'd really appreciate the input.