Hi ladies, I hope you are all doing well 
I have just got a copy of my Dexa scan report. I have been told I need to take Cali-D due to Osteopenia. However, whilst reading my report I have noticed some information used for the Frax result is incorrect and was wondering what to do. It states I was 41 when I began premature menopause and it also states āHRT taken between the ages of 50 and 55ā. I was 49 when I started premature menopause and Iāve never taken HRT because I had breast cancer.
My question is, should I inform my surgeon (I am not under Oncology this time as I had a mastectomy due to recurrence) and/or my GP? Could this change make a difference to my treatment going forward? I know it wonāt change my T/Z scores. So do I bother these busy doctors or just leave it.
Just an added note AI says it could change me to high risk fractures and therefore I should mention it to my surgeon/doctor.
Thank you for your help
Sue
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Hi @SueDerb
If I noticed this mistake, I would contact my BCN and let them know. They should be able to either relay the info to where it needs to go or let you know if you need to contact someone else.
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Absolutely let them know. Even if it doesnāt make much of a difference you deserve clarity on all your records, just for future reference if nothing else
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Agree with everyone, you definitely need to let them know so you can get assurance your results have not been mixed up with someone elseās.
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Thank you so much ladies, thatās what I was thinking but itās taken ages to get my scans, Iāve been waiting and chasing up my pathology report since March and my Dexa scan since 8/5, they are so busy.
I have an appointment with my surgeon Friday to see if I have lymphoedema so will take it with me and explain, Iām also going to email it to them tomorrow so they have a chance to investigate it by Friday.
Thank you again for your advice.
Sue x
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Hi foxgem, how are things with you? So lovely to hear from you again.
Sue x
I am doing ok thank you. Finished my 8 rounds of chemotherapy, started hormone therapy and now just waiting for my next operation. Very glad to get the chemo done 
How are you getting on?
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Iād say your GP as any referral for osteoporosis would come from then not your surgeon.
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@foxgem Iām so glad your chemo is over now, how did you cope? I hope it was kind to you because you have and still are going through enough.
What hormone meds are you on now?
Iām okay thank you, still getting used to the Mastectomy and a few side effects from Letrozole but itās not too bad. I think I have Lymphoedema though, just as you get around the corner thereās something else but I am still here and enjoying life.
Take care of yourself x
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Thank you @bluetit11 it was my surgeon that ordered the Dexa scan but I will also let the doctors know once I have it confirmed.
I hope you are doing well x
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We are paying a heavy price to still be here arenāt we but its worth it 
It was pretty awful as expected but I managed ok. Thereās a clear pattern with it so once you get through 1, you can expect the same for the 2nd and so on. I was able to manage most symptoms and only needed them to reduce my dose on the very last one. It felt like time stood still sometimes and honestly there were days I didnt think id get through it. Its not just physical its definitely a mental challenge also. And then just like that you are through it.
I am having Zoladex injections to shut my ovaries down and will be starting on tamoxifen soon for a couple of months. Then switching to another drug after once they are sure my body is in menopause. I am having my ovaries out at some point also.
The hot flushes are the only real symptom I seem to get at the moment. If they increase with the added tamoxifen I could be in trouble but im hoping thos weather isnt helping. I cant really contribute my fatigue to it yet to the lack of estrogen as my body was very tired after the chemo and Iām sure its still healing. I am determined not to be upset about the hot flushes. Again its just the price I need to pay unfortunately. I am hoping I can counter any other symptoms that come my way with movement, diet and as much mental strength as I can find haha
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Hi - like other people I believe you should get the right information on your record. It matters now and in the future ā¦ and thereāll be a more accurate comparison with your next scan too. Are you taking an aromatase inhibitor, like Letrozole or Exemestane? I took them, one for 2 years and one for 3 years and my bone porosity did suffer despite taking Calcium/Vit D ā¦ so at the last scan in Sept 2024 I had to start taking Alendronic Acid. But I did have a fracture ā¦ shoulder, while runningā¦
ā¦ and my mother had osteoporosis and a hip fracture so all that went into the calculations. Hoping the next scan this summer shows some stability, or improvement. Stay well x
You are so strong foxgem, you have already proven this after everything you have been through. I almost feel guilty I didnāt have to have chemo after both my diagnosis but obviously so relieved. I donāt know how I dare moan about what I am going through.
You have got this, I am here if you ever want to talk.
As for the Tamoxifen, I was on it for 5 years, pre menopausal until I started taking them and it initiated the menopause and I really suffered with hot flushes for the whole of the 5 + years. It wasnāt nice but you do get through it, you have to.
I hope you are over the worst now and are able to try to get your life back to a new normal.
Sue x
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Hi, thank you for your reply.
I contacted the breast clinic who told me to get in touch with the Osteoporosis department who did the scan. Having spoken to the department, first she told me to speak to my consultant, it must be his Fault and then she said it was my fault the information was incorrect, she explained that they asked me āwhen did your periods end?ā I said at the age of 41 (I had a hysterectomy due to cancer cells), thatās all it asked and to be honest I didnāt understand the relevance of that question, I do now, from that answer they decided I must have started the menopause, however, they left the ovaries behind so I was still producing Oestrogen. She said I should have told them that I had a hysterectomy, how did I know it was relevant. As for the HRT, she insisted that Tamoxifen is a HRT, as we know this is not the case but she wouldnāt have it. Iāve told her I want her to change the relevant information and complete the fracture risk assessment again. She said she will ring me back, Iām still waiting to hear from them.
I know my Vitamin D was low, I had tests nearly 2 years ago so been on high strength vitamin D since then. Like you, I am wondering if I should be on Adcal or something like that. I am now on Letrozole which isnāt going to help.
Thank you for your help x
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Please dont feel guilty we all have our own battles here and none of them are less than others. Celebrate not needing the chemo, I will for you haha
The hardest part is ive always been a really cold person so itās been really hard. Sleeping at night is awful. I am hoping it calms a little once the summer is over
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How rude of her! Tamoxifen is hormone therapy not hormone replacement therapy and that and everything else should be in your medical records. If they want to know when your menopause started thatās what should be asked.
Iād be using the complaints system after that response 
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I understand what you mean about chemotherapy. Iām very pleased that I didnāt need it but also feel like Iāve had ācancer lightā and am a bit of a fraud.
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@bluetit11 please donāt feel like a fraud, Iām sure you have still been through a lot but I do understand where you are coming from because when you hear what some ladies have been through you feel so bad for them but Iām also sure a lot of ladies will say the same about you.
We are all going down our individual paths arenāt we, itās just a different path. For me I have been on this path since 2018, had 5 operations, 23 sessions of radiotherapy, 5 years on Tamoxifen, thought it was over but then on December 2025 diagnosed with a recurrence, so had a mastectomy and now on Letrozole for 10 years and maybe have Lymphoedema . I will be okay though but it doesnāt mean my path was easy or hard, just different, just like yours 
.
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Hi SueDerb
Like everybody else I agree you have a right to get your record corrected, but I also think they have mixed your information up and you might be hearing someone elseās results. I would want them to prove to me the results are mine, especially since it took so long for them to get it to you.
The other thing I wanted to tell everyone about is this VitaD thing. As I got older, every year my numbers went down. But I recently did my DNA health test and found that becuase of my DNA my body does NOT utilize vitamin D but instead basically turns it into water so I get no benefit from it. But the easy fix wasā¦ā¦ take 1 tbsp of high quality olive oil with my vitamin D. (It should be organic, cold first pressed, and demetered if at all possible) I found a biodynamic farm in California that makes it, so thatās what I use. Hope this helps some of you.
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Hi @babcimo thank you so much for the tip. I was told that you should take K2 which also helps your body benefit from Vit D, an Osteoporosis nurse told me, so I take that.
Yes, to be honest, Iām a bit fed up with waiting for this and that and then getting the wrong information, us ladies have enough to deal with without having to chase things up that we should get anyway.
I wish all hospitals had the same processes. My cousin who also had Lobular breast cancer and had a Mastectomy was given so much advice and support but I feel like a nuisance when I ask a question, which has only been twice in 8 years, itās information I should have been told, such as how to protect my bones now that Iām on Letrozole. Even when I explained my concerns about taking Letrozole and side effects it was brushed under the carpet. Sometimes I just want to scream at them but ofcourse I stay polite and patient.
I am going to give the Osteoporosis department until Monday to get back to me and then Iāll ring them again.
Thank you for your help.
Sue x