Hi,
Back in early May when I met my oncologist for the first time I was told I would need a DEXA scan. This was also put in writing. The letter said that the oncologist would request one.
Four months on, this hasn’t been booked. I contacted that department and they said my GP should action it. They wrote in a text that they don’t book DEXA scans. My breast cancer nurse has stated twice it’s for my GP to organise. I’m being batted back and forward, no one wants to take responsibility for what must be a routine scan. I’ve made calls to the oncologist secretary, emailed that department, phoned the department responsible for booking appointments, and have reached a dead end.
I’m supposed to see my oncologist for a follow-up early September but no appointment date yet.
I live in Scotland and the breast consultant arranged my Dexa scan. I’m still waiting a year on but this is due to the macine breaking down and staff shortages. It is not up to the GP’s to request this, they are under enough pressure as it is. The hospital is passing the buck, it’s not a very good duty of care !
My DEXA scan was organised by oncology and I only had to wait about 5 weeks. Future ones (every 2 years) will need to be organised by the GP as I have now been discharged from oncology. This is in Leeds.
Breast clinic arranged mine , I don’t think it’s GPs responsibility because it’s due to your breast cancer treatment .Do you have contact details for the breast cancer nurses in that department ? Ring and leave a message if no-one answers , ask them to intervene and sort this out - it’s up to them to resolve who arranges the test not you !! NHS can be very frustrating at times !!!
Initially I was down to be on Tamoxifen so my Breast Surgeon who would normally request one didn’t. When he found that I’d been changed to Anastrozole he wrote to say he would request it - so obviously where I am it’s the Breast Consultant’s job - at least for the initial one.
Having said that he forgot to do it but I’m on the Small trial and my Research Nurse sorted it.
My involvement with Oncology was minimal and not at the same Hospital / area that I had surgery because of the research trial so I wouldn’t have expected that they would do it really.
If you have a local Breast Cancer Support Group you could find out if anyone else is having the same problem and who has booked their initial scans.
Hi,
I’m in a similar situation as I’ve been categorically told twice by my breast cancer nurse that my GP should arrange it. But the letter I have from the oncologist contradicts that. It’s all a bit of a mess down here on (the sometimes sunny) south coast, insufficient clinicians etc.
All the best.
That’s a good idea about contacting the local group - I hadn’t thought of that.
I’ve been taking Letrozole for three months so I was hoping the Dexa scan would organised by now to monitor the impact on my bones. It’s all a bit hit and miss.
Best wishes.
Reading everyones experiences it sounds like there isn’t standard guidance on responsibility or timing of the first DEXA. In my case my oncologist said that she would write to the GP to request the DEXA, similar to how she provided instructions for letrozole prescriptions to be managed by the GP. She said she expects the GP to monitor bone density as it would be ongoing. My oncologist didn’t feel there was any time urgency to request the first DEXA within any particular timeframe, though I repeatedly stated I wanted the baseline to be done soon, ideally before I started letrozole as I was concerned about it’s affect on bone density and wanted to be able to monitor changes effectively.
After I received the clinic letter I had an appointment with my GP to discuss that and the GP then requested the DEXA. My first DEXA is next week, 3 months from starting letrozole. My DEXA appointment was scheduled for 6 weeks from the request date.
I wonder whether getting in touch with PALS would help, if you aren’t getting anywhere between the various NHS parties you’ve already reached out. I hope it gets sorted out for you soon.
I wish there was standard guidance. It feels a little ad hoc at the moment. I wanted a baseline DEXA, otherwise how would they know how the meds are impacting on bone density? I think I’ll be in touch with PALS soon.
Best wishes.
Just to reassure you on the timing of the baseline scan, my oncologist did say that having it done a few months after starting the AI wouldn’t make a material difference as it takes time for bone density to be affected; i.e. that its a very slow and gradual process. Her verbal guidance/recommendation was to have it done within 6 months of starting, even though I was keen to have it done asap.
Hello, can a Dexa scan be offered to all i.e. do you have to be over a certain age to request a scan? I’m in my 40s during my chemo treatment I was put on Prostap which l did suffer from the side effects one of the effects- my bones ache, all over my body they still do on some days. When l ask my Oncologist for a dexa scan they said l was too young and the effects on my bones would not have been a great impact therefore a scan was not required but I’m not sure. Sometimes we all just want peace of mind specially now having gone through everything your body has been through. But sometimes l think hospitals find arranging these tests/scans is more hassle than it’s worth not to mention their resource!
Not sure. It maybe to do with the meds that they prescribe. I’m 62 and on Letrozole and from what I gather it can affect bone density. Also, it could relate to if you’ve been through the menopause.
@RP002, as Flowersandbees has eluded it does depend on a lot of factors which could vary from person to person; when it comes to BC endocrine treatment, taking an AI such as letrozole/anastrazole (for 5+ years) etc… is known to effect bone density & that along with menopausal status would certainly be considered when establishing whether a DEXA scan should be done. I’m in my late 40’s now, and was in peri-menopause at the time of diagnosis, but a few months later after surgery when I was due to start endocrine treatment, my oncologist confirmed I was in menopause after the necessary checks. So the endocrine treatment offered to me changed from Tamoxifen to Letrozole and along with that the need for a DEXA scan. If I had been peri-menopausal and taking Tamoxifen, my oncologist said that a DEXA scan wouldn’t have been required/requested. The purpose of the DEXA is all to do with monitoring bone density when there is a higher risk of it decreasing at a quicker pace than normal (e.g. due to a pre-existing condition or family history of osteoporosis, or if already in menopause and starting an AI, or another reason etc…).
Typically if you are under 50 they would consider you pre-menopausal and hence say you are too young for a DEXA (but I know for e.g. I don’t fit that standard age based menopause criteria). I’m not sure how long it is since your treatment finished, but it’s worth speaking with your GP if a along time has passed; aching bones and joints can be caused due to many reasons. I had mild joint pain when I was peri-menopausal in my mid 40’s, which was later found to be possibly as a result of fluctuations in hormone levels but now I have different mild joint stiffness which is a side effect of letrozole. So it’s sometimes difficult to tell what the root cause of pain is. Not sure if this is reassuring, but my oncologist did say that in my case the joint stiffness/pain I now feel resulting from letrozole isn’t a sign of loss of bone density (brittle bones), as it takes a long time for bone density to be affected (unless you already have osteoporosis or osteopenia as a pre-existing medical condition).
My DEXA scan was arranged by my oncologist (who’s based at a different trust).
For anyone in England who’s had / having issues or concerns with the way their treatment has gone, you may want to check out Healthwatch & complete their survey: https://www.healthwatch.co.uk/have-your-say
My breast surgeon prescribed Letrozole to me after breast surgery and also Adcal calcium tablets as he said that bones may be affected by Letrozole. Oncologist later agreed that Adcal would counteract possible side effect of Letrozole. A year later when I saw breast consultant he asked if I’d had a bone density scan, this was news to me and he said that I should have had a scan 12 months earlier so that they had a base line of my bone density and then every 2 years to check if any change after taking Letrozole. He wrote to my GP who should, he said, have arranged this. (I had asked for this scan from my GP months earlier as I had a lot of back pain, but GP told me she couldn’t request it as I had no risk of Osteoporosis due to being a non smoker and normal weight, wrongly as it turned out I was at risk because of Letrozole) After receipt of request from Consultant, which was apparently lost in post, my GP after several phone calls from myself, eventually requested scan and I was put on 14 months waiting list (there is only 1 DEXA scan to cover whole of North Wales). DEXA scan secretary agreed I should have scan straight away due to Letrozole, but to expediate matter she needed GP Surgery to admit scan should have been requested by them a year earlier, but Surgery did not want to take the blame and claimed that the Hospital had not asked them to request the scan. After many phone calls fom myself to both Hospital and Surgery, the Surgery eventually sent and email to Hospital which satisfied their reqirements that there had been a delay and I had scan 2 weeks after. Result of scan was that I have Osteoporosis in both spine and hips and was immediately put on Alendronic Acid tablets until I had infusion 4 months later to replace these tablets. I spoke to another Consultant who is a friend of mine, and he said that requests should always come from whoever prescribes tablets and not the GP, as the Consultant would know the possible consequences of the medication whereas the GP would not. I was informed by my Breast Care nurse that they have recently changed the system and the Hospital now requests the scan. I feel very let down that I was not made aware of the risk and consequences of Osteoporosis which has changed my life, especially as I live alone. I am aged 63 and Doctor said that I probably had Osteoporosis before starting Letrozole but that this medication would have made it worse. I would have paid privately for bone scan had I known of the real risk of Osteoporosis so that I knew how to care for my bones so that they would not hopefully deteriorate any further.
Hi Ceinwen,
What an awful experience, and to learn that you had Osteoporosis must have been a terrible shock when you finally accessed a scan. I’m truly shocked at how patients fall through the net so easily and how there’s such little consistency (and equipment). You shouldn’t have been put through all that. I’m also amazed that this hasn’t been identified as an issue in cancer care. It’s extremely concerning.
I’m going to double my effort to get the Dexa scan organised, otherwise it’ll drift on for ages.
After being messed around by both my GP surgery and oncology department, I received a call from the oncologist secretary on Friday. She said that the Dr would email my GP surgery to request that they do the referral (sounds bonkers - why couldn’t she do it?). I popped into the surgery to check that they’d received the email. The reception said that they hadn’t actioned the referral, and she couldn’t work out if they’d received oncologist’s email and they were generally behind reading their emails (which hardly inspires confidence). It’s enough to drive you round the twist. Her only advice was wait another week and ask again. I have a face-to-face with one of the practice doctors on Thursday, I’ll ask her about it then.
Thanks for sharing your experience, sorry you had to go through it all.
All the best.