OSTEOPOROSIS - any advice welcome!

Hi all,
many thanks for your postings.

Carol, what is the B-ahead study?

here is a reminder of what the definitions of bone density are:-

World Health Organisation(WHO) definitions based on bone density in white women:-
Normal bone - T score better than -1
Osteopenia - T score between -1 and -2.5
Osteoporosis - T score less than -2.5

Keep on top of your density scores ladies and remember where to access the guidelines for treatment (see link earlier in thread).

Remember- baseline assessment should be done within 3 months of starting treatment with an AI. Monitoring and treatment thereafter depends on baseline BMD, age and presence of any major risk factors for osteoporitic fracture. this includes disease known to increase # risk such as premature menopause.

If you are on an AI, and especially if you have gone through a premature menopause too - INSIST on having these scans done. We have more than enough to deal with, going through the treatment for breast cancer and do NOT need the added problems of a possible preventable side effect of treatment, osteoporosis.
Up goes the holiday insurance again I guess!!
Libby, I agree with you, the National Osteoporosis society are absolutely brilliant- do give their helpline a ring, and they will tell you all about the risks of AIs and premature menopause on your bone health and ways to preevnt it etc. I don’t know what we would do without the supports of these helplines - and that goes for this one too - so helpful.Use them!!
XXXXXX

Hi, Jackie and Happyshopper

The B-AHEAD (Breast-Activity & Healthy Eating After Diagnosis is being run by the Nightingale centre and Genesis Prevention Centre.
the bone density scan I had there gave me a total body score of -2.2. I asked my GP to send them a copy of my DXA as they are the people who recommended I have one. I will ring them when they get this as I think I will get more sense out of them. when I have those results I will contact the the Ostioporosis Society. If you Google Genesis you can find out more about what they do.
thanks for your help, ladies

Carolxx

Hi all
I am in Scotland, started Arimidex in Jan & had bone scan in March, told I would have another one in 2 years, & 2 yrs after that, given to understand this is standard practise. I was sent away with leaflets about diet i.e foods rich in calcium & in vit D.
Within a short time I got letter from onc saying scan showed osteopenia which she hopes I will be able to maintain through diet, however if I find this difficult I can get GP to prescribe a supplement. Since I won’t be scanned again for 2 yrs & won’t therefore know if dietary control is working, I started taking an o.t.c. calcium/vit D supplement daily & told onc this at my next consultation & was told that’s fine. It continues to annoy me though that our care is not standard across the country.

Divvy - You should be able to get the calcium supplement from your GP. I have Adcal-D3, at my request.

Ann

Hi Ladies,
It seems there is some inconsistantcy on the the management of bone density is in the management of women on AIs (and those put into early menopause).It does, of course vary with individual situsations.
The guidelines from NICE seem to be pretty clear about how women should be managed who are on an Aromatase Inhibitor from reading these, if I have read them right, they appear to state:

“In premenopausal women ovarian suppression as a therapeutic strategy in itself or as a consequence of adjuvant chemotherapy leads to accelerated bone loss due to induction of menopause”.

“As a consequence of a reduction in circulating oestrogen levels, the use of aromatase inhibitors in the adjuvant endocrine therapy of postmenopausal women is associated with an increased risk of bone fractures. With the increasing use of aromatase inhibitors, bone health is becoming a significant clinical issue”.

“There is an increased risk of bone fractures due to osteoporosis associated with aromatase inhibitors and with chemotherapy induced menopause.”

If I have read these correctly, they seem to recommend and say:-

"Patients with early invasive breast cancer should have a baseline dual energy X-ray absorptiometry (DEXA) scan to assess bone mineral density if they:

  • are starting adjuvant aromatase inhibitor treatment
  • have treatment - induced menopause.
    _ are starting ovarian ablation/suppression therapy".
    postmenopausal women
    "The use of an AI is an indication for evaluation of BMD (bone mineral density) by DXA. BMD assessments should be done at the lumbar spine and at one or both total hip sites. There is no requirement to obtain a DXA before starting treatment, but a baseline assessment should be obtained within 3 months of commencing an AI. Monitoring and treatment thereafter depends on the baseline age, and presence of any major risk factors for osteoporitic fracture ( one of these is such as diseases known to increae fracture risk such as premature menopause)

The link to these guidelines has been posted on here in an earlier posting by Sam so you can read them yourself and see what they say.

There have been many postings on here about peoples’ experiences regarding this, but it would be good to hear some more.
It would be really interesting if anyone out there who is taking AIs, to join in and let us know :
How long you have been on them - I am not sure how long this information has been available
Has your bone density been monitored
What advice/ideas have you been given for building up your bone strength/exercises etc?

As some ladies have rightly pointed out, there are many ways that we can help ourselves, with exercise, especially weight training, diet, etc. I guess we also have to bear in mind that we loose bone density as we get older anyway.
Do contact the Osteoprosis helpline for any advice about your bone health - they are absolutely brilliant and said that they have had a lot of women contacting them who are on AIs (and other treatments for breast ca) and concerned about thier BMD. They gave me alot of advice on what to do to help yourself, things to avoid, things to do,exercise, and sent me loads of leaflets too.
XX

Hello I wish I’d had a DEXA scan BEFORE starting Letrozole, they say the time I was on it before the scan - about 3 months but i’ll check, would not account for the result - osteoporosis and osteopaenia but I dont feel convinced.

Whats done is done - and the big question now is - What meds to take, What exercise to do and What to eat !

The answers are not clear to me. While having surgery, chemo and soon rads, I havent been able to think straight about the osteo issues, so done nothing except go to my GP with letter from hospital specialist who , in a letter (not seen me) recommended some drugs. I looked them up, decided I didnt like sound of them but did fancy Strontium Ranelate - but as I dont fit the NICE guidelines, (havtn had any fractures) went to the GP ready for a fight. Amazingly didnt need it - he said , Strontium is OK - if thats what you want, heres the prescription ! Now I’m not sure about taking the Ca supplement with Vit D - dont like the idea of all that spare Ca in my blood, after recent research report an why no Magnesium supplement for me , if thats so vital for Ca absorption ?

Then - exercise and diet - how much can i do without risking a fracture (weight bearing ex etc) and what do I need to eat to get sufficient Ca from diet alone ?

When chemo and rads over, will tackle this. But I feel the usual practice of handing out first choice of NHS drugs plus saying - more exercise and better diet, isnt specific enough and not geared to the individual.

this has got me a little worried, had ovaries out at 35 and given bone strengtheners but never had a density scan - going to ask about it - thanks x

Dear Breastcancercare,

following on from all this, I wonder if you can answer a query from me?

I started Arimidex in 2006. Do you know if there were any guidelines available at that time for GPs to follow regarding the monitoring of bone density, or is this a “recent” thing and therefore not my doctor’s fault for not monitoring my bone density in all this time?

Thank you for your help with this,
XXX

Dear happyshopper,

I think your query need a more detailed response than we can manage on the forum. Could I suggest that you either phone the Helpline of contact our Ask the Nurse email service.

The Helpline number is 0808 800 6000 and they are open Monday to Friday 9.00am-5.00pm and on Saturdays 9.00am-2.00pm. Calls are free and the trained staff will be able to offer you information and support.

I have also attached the link for the Ask the Nurse service:

breastcancercare.org.uk/about-us/our-services/our-information/email-our-nurse/

I do hope this helps.

Very best wishes

Janet
BCC Facilitator