Follow up DEXA bone scan has been refused

Hello Currant Bun,

Thank you for getting in touch. My name is Helen, I’m one of the Cancer Information Nurses on the Macmillan Support Line. Welcome to the online community.

I am sorry to read that you are struggling to get your anticipated DEXA scan via the NHS. Naturally, good bone health is an imperative and you will want to ensure that the baseline reading from two years ago has not altered. 

Bone mineral density is something that reduces naturally as we age (particularly post the menopause). Medicines that reduce the female hormone oestrogen will further impact bone density. Aromatase Inhibitors (AI) are a family of medicines that reduce oestrogen, and letrozole is a member of that drug family. As a result, women receiving AI therapy for breast cancer are at increased risk of fractures.

The DEXA scan measures the mineral density or the ‘hardness’ of the bone. Often the hip and the spine are measured during a DEXA scan. The result of the DEXA scan is represented as a T- score: the difference of the bone density measured from the average bone density of healthy young adults.

A T- score between minus 1.0 and minus 2.5 would represent osteopenia (bone thinning) and a T- score of minus 2.5 or less is recognised as osteoporosis (commonly called brittle bone disease).

I have searched through the NICE guidance (National Institute for Health and Care Excellence) on breast cancer, hormone therapies and DEXA scans and can only see the recommendation for a baseline DEXA scan when starting an AI (or guidance on treatment if there is evidence of osteoporosis).

However, a UK expert group has produced consensus guidance on the management of bone health for women after breast cancer and recommend DEXA scans during the duration of AI treatment. Scroll down to the paragraph titled Talking about your Osteoporosis risk.  

You have asked if it is normal for a DEXA scan to be refused and I would say that has not been my experience – I wonder if the scanning unit had all the health information necessary to proceed.  

Before you go ahead and book a private scan, I would strongly recommend getting in contact with your breast care team at your treatment hospital as they have generated the care plan and recommended you have the scan at this point.

T- scores change slowly, so you have plenty of time to do this. You could contact the breast care nurses, or you could get a message to your breast consultant via their secretary. Once you have the evidence that you require a DEXA scan, I would put the information into a letter to your GP requesting the decision is reviewed.

You mentioned feeling rather neglected following your treatment and discharge back to your GP. I was saddened to read this and wondered if you might find some peer support in a cancer support group in your area?

Macmillan provides a free counselling service, which you might think helpful to talk through your feelings, and also produces a booklet called Your feelings after cancer treatment.

I do hope this is helpful information, Currant Bun. Good luck on getting that DEXA scan. Please don’t hesitate to get back in contact by email, webchat or phone, if you need further information or support.

The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks* on 0808 808 00 00, 7 days a week, 8am – 8pm.

Best wishes, Helen

Cancer Information Nurse Specialist 

Ref HM/PW 

Thanks for your reply. I've gone back to the hospital and they are looking into this for me. I am not panicking so much now that I know it is only a slow deterioration (if any).

CB

Hi Currant Bun 

Thanks for getting touch on our online community. My name’s Louise and I’m one of the Cancer Information Nurse Specialists here. 

It’s good to hear you followed the information given by my colleague and that you are not panicking as much now you know more.  

Please don’t hesitate to contact us again with any more questions.  

Kind regards   

Louise, Cancer Information Nurse Specialist   

You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.   

Our Ref: AT