Letrozole and osteoporosis

[Alibobs]

I automatically had one allocated when I started anastrozole and was advised I would have them regularly as long as I was on the tablets.

[rose_wilts]

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 ...

[youngatheart]

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. 

[rose_wilts]

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 ...

[SallyG63]

I've had two bone scans, before and after my surgeries to check for spread but a dexa scan is not the same.

[rose_wilts]

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 ...

[SallyG63]

I've recently been started on letrozole, 3 weeks ago. I've never had a dexa scan and not had one mentioned to me by anyone?. No aches or pains that I didn't have before but I've lost half of the hair I managed to keep all though nearly 5 months of chemo with the aid of the cold cap

[JessieCat]

I have been taking Letrozole for two weeks. Haven't had my Dexa scan yet but my oncologist said it would be repeated in 2 years.

[Amina1957]

Hi rose, my poor nan God rest her soul was on her cancer medication for 20 years when she was only supposed to be on it for 5 years. Not one person who is in the medical profession picked up on this.
My breast cancer was hormone based and I was told that the letrozole will block cancer hormones and hopefully will kill any cells left lurking around the body, but I am not sure about the consequences that would come if you stop the letrozole. Peace and blessings x

[ann-m]

Well, tamox suits me fine, Rose & best wishes with it all.
ann x

[rose_wilts]

Really hope the bowel's OK, Amina ... This is one of the things with taking the letrazole: it's only going to be effective against oestrogen-receptive cancers in any case ...

[Amina1957]

I was told every 2 years to make sure that the bones are not deteriorated taking the letrozole medication.
I am thanking God as I have been clear 4 years, but I have been told since that they are now keeping an eye on the bowel since they took a small biopsy 😱. I had a bilateral mastectomy in November 2014 and never once regretted my decision. Just mind blowing at the thought of having bowel cancer now, and I think this has escalated my OCD problems because I am constantly trying to keep busy so that I don't have any time to think about it lol

[rose_wilts]

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 ...

[ladybowler]

Patriciamay

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

[Patriciamay]

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

[ladybowler]

Patriciamay

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

Helena xxx

[Patriciamay]

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?

[ann-m]

Hi Rose,

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.

ann x

[rose_wilts]

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.