Breast cancer and Osteoporosis

Hi SNP, I'm surprised you weren't advised to take Calcium with the Letrozole I assumed that was a standard practice because of the possibility of bone weakening. It's very difficult to know what is the right thing to do. It does need research before making a decision but Google is probably not the best - too many horror stories. 

I know! probably my fault. Problem was I was due to see temp Surgeon today to communicate that I wanted just to stay on Letrozole but Breast nurse and I agreed to postpone till my female senior surgeon back from break and I have had 3 months taking it.
I’ve left a note for my GP and waiting for Breast nurse to ring me before I buy calcium online!

I did not get on with temp male  surgeon and did not trust him. Wasn’t listening to me so I asked him if he had read the documents around patient centered NHS!

Hi I have been on a 6 monthly infusions of zolendronic acid (also a bisphosphonate same isort of thing) for 2.5 years following diagnosis with breast cancer. I have one infusion left. The infusion takes 15 minutes but with the health checks that go with it my sessions are an hour or just over. I had flu symptoms for 24 hours after my first infusion, it was noticeable but not debilitating. Since then no side effects at all that i’m aware of. Compared with chemo, radio etc It has  been a walk in the park. Good luck with the rest of your treatment  Love from the coffee fiend xx

Hi, I’m quite new to this, but I’ve recently had support on the breast cancer forum, for issues with breast pain, swelling and soreness, apparently from delayed radiotherapy side effects. I’m also struggling with other issues, after being diagnosed with osteoporosis. Which was also a shock, as I’ve never had a broken bone, or any other symptoms. I’ve been on Letrozole since my lobectomy in June without noticeable side efects. I had delayed radiotherapy (5 sessions) in October, which on hindsight I wish I had declined, as it didn’t fall in to the time frame guidelines. I was fine after the lobectomy, but have gone downhill fast since radiotherapy. I have been prescribed ibandronic acid 500mg and calcichew-D3 daily. Prior to starting the ibandronic acid, I had to have a tooth extracted (front tooth) as apparently any dental work which may need doing over the next three year, has to be done, because of jaw problems associated with the medication. It’s been three weeks since the extraction and the socket has just settled down. I think my immune system hasn’t recovered yet, perhaps early days. I’m not sure my title should be optimistic!, 

On a positive note, I’m five year down the line from lung cancer. I had an open left lung lobectomy to remove a 7x5cm tumour in Jan19. Looking back it was so much less invasive than breast cancer ( even after having my ribs purposely broke). Apart from initial morphine patches and an immediate bout of pneumonia, I’ve had no other treatment or medication. Hopefully that’s good news for any recently diagnosed lung cancer patients. 

I’m finding  it helps to offload, concerns, hopes and fears to all of you going through the same/similar experiences. Thanks for reading this long post. Wishing you all a healthy pain free night. 

Hi Jenkins01, everyone is different but as you can see from the replies you have had, it is common to prescribe Alendronic Acid and Calcium/Vitamin D supplement.  I never took a pill in my life except for antibiotics twice and am now 68.  Now, I am on daily Anastrozole after lumpectomy/radiotherapy.     After Dex scan result, I was diagnosed with Osteoporosis - no previous knowledge or thoughts about it but there it was.  If you read side effects on any prescription drug it will give you every possible issue they can think of to cover all scenarios and can be scary. My only side effect is having much stronger nails so for me it's a bonus.  Taking the pill weekly on an empty stomach is not my idea of fun as I like 2 mugs of tea before I start the day and I don't like water much but it is only once a week and the tea is very much appreciated afterwards. It's very easy to get into the routine of sitting and drinking the water with the pill and 30 mins is not too long and I do it every Monday so gets it out of the way for the week.  I do hope all goes well for you and the BC team & GP can allay any fears you may have. Take care xx

Hi Jenkins01 , I also was diagnosed with osteoporosis after treatment and take a monthly tablet. I also have to take on an empty stomach, will full glass of water, keep upright for an hour and not eat for an hour after taking. I take it on a work day, I get up, take it and walk the dog for half hour and then come back, get ready for work and finally have breakfast. I can honestly say I don’t seem to have any real side effects, bit achy maybe, bit tired but I pretty much operate as normal. Mines called ibandronic acid. Hope that helps x

Hi @jenkin01 

Totally understand how you feel . I was diagnosed with osteoporosis in my spine at 52. No symptoms just a DEXA scan. Fit and very active. My consultant told me osteo in spine first occurs due to low estrogen and I was 6 years post menopausal. Other bones were normal. I went on HRT for 4 years which improved it but was then diagnosed with very early breast cancer picked up by mammogram so had to stop.

I've been on Anastrozole for 2.5 years. Now taking the branded version Arimidex as much less side effects for me.

I was advised to start Alendronate which I reluctantly did but had a lot of stomach side effects that only just settled down before I was due the next dose! So my GP switched me to Risendronate which is much better and I barely get anything. It is annoying the 30 minutes no food or drink but its part of my routine now on a Friday. You also shouldnt take calcium tablets within 4 hours of a bisphosphonate tablet. So if Alendronate doesn't suit there are others - I react to everything but the risedronate is ok for me. 

I plan to have another DEXA scan when I reach the end of my 5 years on Arimidex and will look to pause the Risendronate for a while if it's improved/ stable. 

Hope you find a treatment which suits you xx

Hi Jenkins01, I recently got the results of my DEXA scan and found out I have osteopenia. I've been prescribed alendronic acid in tablet form, which I've just started taking.although I was quite worried about the possible side effects, but I've been fine so far. I just remained standing for 30 minutes and kept busy. My GP said alendronic acid works well and is generally well-tolerated. I'm on Anastrozole and vitamin D and calcium supplements, and I try to include a lot of plant-based  food and calcium rich foods in my diet. Regular exercise has also helped. I'm hoping the alendronic acid will help slow down any further bone loss. I didn't take anything before my diagnosis, and now I'm taking all the above, but if it helps, it's worth taking. I hope you're feeling better. Take care x

It does feel like they have to give one a lot to keep it at bay. I now have statins, soon to start Zoledronic Acid Infusions, Acrette for osteoporosis, Tamoxifen. I feel like a creaking gate at times what with insomnia and energy lacking some days. Roll in summer at least the return of light and the sun's rays is a boost.