Hello Pumps ,welcome to the group . I had double mastectomies and lymph clearance on left breast .I finished chemo in March of this year , felt pretty good through it all . Been told that I am clear now ,but on 3 years of bisphosphonates,every six months and on Letrezole for 10 years . Felt ok after my first bisphosphonate infusion , no side effects .Next one in October . Letrezole has increased night and day sweats and bone and muscle discomfort,but it’s manageable.I am going to carry on taking this ,but obviously your decision if you do, good luck and happy to discuss things ,R xx

Thanks for replying, I'm pleased to hear you didn't have side effects from bisphosphonate infusion. Did you manage to get any information about how much the bisphosphonates improve the chances of it not spreading to the bones? My Macmillan nurse told me it was only 3% improvement on not having it - I really can't contemplate it on that basis. The side effects like necrosis of the jaw  and spontaneous femur fracture sound horrendous.

Hello Pumps and thank you for your posts.

I can appreciate that starting a treatment and looking at the possible side effects can be worrying. However, there has been extensive research into the use of bisphosphates for people with cancer, including breast cancer. 

I am afraid that I can't tell you what your individual risk of developing a side effect is. However, these treatments have been extensively researched. It is known that the benefit of taking bisphosphates outweigh the risks.

The European Medicine Agency say the occurrence of a Atypical Femur Fracture (AFF) is rare. A large research study looked back at other studies at this risk (a metanalysis).  All of these studies reported a very small incident of it happening and that the risk was even lower in people who were having it as part of their cancer treatment. For example one study showed a risk of 0.05 per 100,000 patients.

A study of over 18,000 women with breast cancer saw the rate of jaw necrosis with IV Zoledronic acid was 1-2%.  It is considered an uncommon side effect. You can minimise the risk of this happening by getting your teeth checked before you start treatment.  

The EMC (European Medicine Compendium) which provide clinicians and the public with up to date, approved and regulated prescribing information for licensed medicines say that the risk of necrosis of the jaw is uncommon, with studies showing that many of the patients diagnosed with it were also receiving chemotherapy and corticosteroids and had signs of local infection including osteomyelitis (bone infection). They also say that the risk of AFF is rare.

Your breast team may have used use Predict , which is an online tool that helps patients and clinicians see how different treatments for early invasive breast cancer might improve survival rates after surgery. Do ask you breast care nurse to go over this with you, it might help you understand your situation better.  

We also have information about Zoledronic Acid on our website here.

Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care,

Caroline 

Hello Caroline, thank you so much for taking the time to respond, all that information is helpful. Do you know where I can find stats on recurrence with or without bisphosphonates in post menopausal women? I am not a researcher but I worked in a research environment for 17 years - I am puzzled as to why such stats are so hard to find.

Thanks

Hello Pumps and thanks for getting back in touch with the nurses.

Decisions about treatment can be difficult to make and weighing up the risks versus the benefits is important to help make the right choice for you.

Having had a look myself it is possible to google various studies that have looked at comparing recurrence outcomes of post menopausal breast cancer patients who have and haven't received biphosphonates as part of their treatment. The results and findings of these studies often include statistics within the results however like all statistics they cannot speak into any individual patients situation as to what will or won't happen in the future.

As my colleague has said biphosphonates have been studied intensively over the years that has shown a benefit for many women affected by breast cancer. From what you have said your breast care nurse has given a difference of about 3% which seems to be about right from what I have read myself. This may not seem that much to you but for some people any reduction to their risk of a cancer recurrence or other side effect from treatments such as osteoporosis is worth giving a go.

Do speak with your team about this again if you are still undecided to help you make up your mind what is best for you.

Wishing you all the best

Take care

Naomi