Hi all, hope it's ok to ask this question it's a bit off topic but related to my cancer treatment. I was diagnosed with breast cancer last September, my treatment as gone well. I had a lumpectomy in November and saw my consultant who was pleased with how that went - margins and lymph nodes all clear. I am currently taking Letrozole, I was also prescribed vitamin D and Calcium to help my bones because of the risk of the Letrozole causing bone weakness.
I was sent for a DEXA scan to check my bone density and met with my oncologist yesterday to talk about my radiotherapy.
I will be sent for my radiotherapy in the next few weeks so feel very positive about my cancer journey and very luck that it was picked up early.
The oncologist also gave me the results of the DEXA scan which I wasn't expecting or prepared for so it all went over my head a little bit. He says I have osteoporosis in my spine he didn't say how bad it was - having done some googling it looks like it is given a T score which I wasn't told what it was.
They want to prescribe alendronic acid for my bones but the possible side effects are really worrying me.
I feel like I'm on a downward spiral of meds and that taking the alendronic acid will cause more problems which will lead to more meds.
Sorry if this is the wrong place to post this but I'm feeling very down about this new problem and not really sure where to turn.
Hi Jenkins01 - I’m having my infusion for this to help my bones today so I can let you know how I feel in a day or two. I’ve been told it’s like flu like symptoms but it’s a preventative. I’m about to start my Letrozole too - I had to wait a few weeks as I’d recently had my chemo (just b4 Christmas). This infusion is done every 6 months.
Thanks for your reply and I hope your chemo went well. They want to give me a tablet form of the drug so it sounds slightly different, I've been told I will need to take it once a week on an empty stomach before any other meds and I will need to sit or stand up for 30 minutes after taking it because otherwise it can affect the digestive trac. This time last year I took no meds at all apart from a vitamin D supplement, now I feel like I'm being overloaded with medication!
Hi Jenkins01 , definitely the right place to post your question, lots of folk here on hormone treatment so hopefully you’ll get plenty of replies. I’m on Anastrozole, and found out at my first dexa scan that I had osteopenia, which is the precursor to osteoporosis. Lots of people my age (59 then, 64 now) likely have osteopenia and don’t know it. But of course it’s very relevant to our treatments. In my case, they’ve been happy that I take calcium and Vit D, and have dexa scans every 2 years. At my most recent scan it showed some deterioration but not yet osteoporosis. However a close friend had almost identical breast cancer to me, a couple of years ago, and does already have osteoporosis. So she’s taking tamoxifen instead of letrozole or Anastrozole. I’m not a medic and every case is different, but maybe that’s something you could discuss with the breast team? Two other friends who I met through ear acupuncture at the maggies centre at Addenbrookes, which we all attended to help with hot flushes, were also put on tamoxifen because of existing osteoporosis. But assuming you stay on letrozole, I’d also add that my close friend mentioned first is already on bisphosphonates for her osteoporosis. She takes it in tablet form and I’m not aware that she’s had any issues. She does follow the protocol carefully to avoid digestive issues. And I’m sure you’ll get replies here from people who are taking this medication and can share their experiences. I know just what you mean though, about more medication. Like you I wasn’t on anything before this cancer malarkey. But I think I’d take anything suggested to give me the best chance. Another consideration might be, try the medication and see how it goes? Sorry for the long ramble, I feel like I’ve lost any ability to be concise! Love and hugs, HFxx
HappyFeet1 xx
Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
Thankyou so much for your reply HappyFeet1 some very useful information. I went for a walk with a group of friends today and was telling them and 1 of them takes the alendronic acid with no complications. I think I was really thrown yesterday because I didn't know that my DEXA scan would be part of the conversation. I think I need to speak to my doctor who will hopefully get a copy of my results and tell me what my T scores are. My sister has osteoporosis and osteopenia but wasn't even advised to take calcium just told to drink milk and increase her calcium through diet, that was several years ago and she hasn't had a follow up since which is concerning.
Hello, there’s so much to take in isn’t there. It must have been a real shock for you. Have you been having pain in your spine ? I am currently having Bisphosphonate infusions alongside EC chemotherapy, I’ve been having the infusions every 6 weeks. I also take Adcal and Vit D to protect my bones . I am due to have a Dexa scan in February. I understand I will have this first one as a marker then it will be repeated at some point to check for changes. I have to say that it’s difficult to say if the side effects I experienced were due to EC or Bisphosphonates. I was told you don’t generally have problems with the latter. I’m due to have Bisphosphonate again next Thursday. I wish you well with your treatment. Big hugs
Thankyou, no I'm not in any pain at all in fact I feel really well I think this is why it was such a shock. I went to my appointment feeling really positive having had such a good recovery from my lumpectomy but haven't slept the last two nights with this new information.
I know what you mean - I was healthy like most of us no meds and previously only taking herbal supplements for menopause.
The infusion I was given was Zoledronic Acid and was prescribed calcium d3 to take for the month on a daily basis, so I think now I’ve had that I will start taking the Letrozole on Monday. I appear to feel ok so I’m happy this morning !
I will be interested to see if I will have any dexa scans - another question for the oncologist I think !
I have found this discussion very interesting. I’m taking Letrozole ( 8 weeks) was wondering about taking calcium. ( 75 btw) as I read about bone density issues. Nobody has mentioned this to me so I think I’ll ring the Breast nurses today.
My female surgeon has taken a long holiday and in the interim I saw a male surgeon and it did not go well! As a result I asked for a break to see how Letrozole shrinks primary and secondary 3 tumors in lymph nodes. So it has been agreed I’ll be seen by my surgeon early March. By that time 3 months on Letrozole so it’s probably important to sort this out.
Hi SMP - didn’t realise that Letrozole can shrink - I’ve already had my surgery smx with full clearance and chemo - I’m starting radiotherapy in a few weeks time. They also want me to take in tablet form Abemaciclib once I’ve had my radiotherapy- the oncologist didn’t explain what it is and said that it will be discussed when I have my next appointment in a couple of months time - don’t want to google it otherwise I may freak out !
Agree don’t google. I suggest you take charge and ring the Breast nurse and ask them to explain plus get to see oncologist and/or surgeon soon. Worry is debilitating and it’s your body and your right to take charge. Sorry if that sound emphatic but best for you. My daughter is a doctor and has helped me do a systematic review of all the appropriate research and it has made me fell strong and informed.
