Breast Cancer Now Forum

Hi Dizzydee,   Just to say that I was put on two years of Zoladex and Tamoxifen 26 years ago, before it had been established as a standard treatment to have both together. Zoladex was under trial at thd time and no one knew if it worked together with Tamoxifen or worked against it. I trusted thd judgement of my oncologist. It worked for me, but then I wouldn't know how much added benefit came from the Zoladex. Two years only meant the side effects were bearable. Do hope you can make the decision that's right for you. ... View more

Hi Gay,   I, too, have been trying to establish the link between osteoarthritis and anastrozole/letrazole. After a year of anastrozole (actually, just after I had implants - more on that below) I started to get leg pain and this quickly progresssed to hip pain and pain in other joints, so that after about 6 weeks I could hardly get upstairs. This didn't seem to me to be 'normal' progression for osteoarthritis. I had not had any symptoms at all before and was a keen walker. Even after mastectomy I was walking 8 miles a day on Hadrian's wall (just a couple of months before the joint pain set in.) It was difficult to get the GP and the orthapaedic specialist to accept any link between arthritis and Anastrozole, though my breast cancer team seemed to acknowledge links with joint pain (and it is listed on the pack insert  as a side effect). I was switched from Anastrozole to Letrazole but no improvement. I had Xrays and MRI for hip and back and was told I had osteoarthritis, but it seemed the physical damage to cartilage etc did not match the high level of pain (They seem to make the diagnosis on pain experienced as well as by physical damage). My thinking is that perhaps it is the levels of inflammation that are the problem.    After 4 years on these drugs my cancer team switched me to Tamoxifen after a 6 week break, but the joint problems continue. I have arthritc type pains in almost all my joints and can find walking round the house really difficult. I was a very fit 62 year old when all this started.   I researched it on Google. (As you do!)  When I put in 'compliance' as a search term it came up with lots of scientific articles about the severe side effects that lead to women stopping the drug. Joint pain was a major one (I think I read that 55% of women who stop said it was because of joint pain). Some articles talked about arthritis. Most of the researchers recommended that women don't give up on the drug just because of side effects but have they any idea what it feels like to be in such pain!    What is worrying is the unanswered question as to whether the damage is permanent. One article I read was aimed at orthopaedic surgeons (enlightened, as all the specialists tend to stay firmly in their particular box. In fact the guy I was referred to actually boasted about not knowing anything about cancer drug side effects). That article was warning surgeons not to rush to hip replacements if the patient was on anastrozole etc. as the symptoms could resolve themselves in 18 months. (Perhaps there are surgeons and women not making the connection and ending up with unnecessary hip replacements). My pain has only got worse, however, so I am wondering now if the damage for me is permanent.   Another thing. I think it was too much of a coincidence that the joint pain/arthritis started up immediately after my implant operation in 2012, when I had an old implant removed/replaced from the first mastectomy I had in 1991, and had another implant put in for 2nd mastectomy I had in 2011. The official view is that implants cannot cause an arthritic response (or any other effects) and my cancer team agrees. However, two of the docs at my GP surgery are now saying it is always possible and there is anecdotal evidence and there is, of course, stuff on the internet about it. So where does that leave us?!   Hope my story helps to build the picture about what the breast cancer treatments do. ... View more

Interesting, Sol, that you found a site where people were complaining about side effects of Bisphoshponates as I think I might be suffering - though I'm on Residronate Sodium, not Fosamax.  After 4 years on Letrazole and three years of horrible joint and bone pain and onset of arthritis I'm taking a break from Letrazole. Three weeks so far and only marginal improvement. So I'm wondering if it's the bisphosphonate as well, as I've read about joint pain side effects of those. And I take statins too, so it might be a triple whammy. (I was ok on the bisphosphonates before I got breast cancer diagnosis. Had been taking them for a few years already as bones were deteriorating). By the way, I had bc 20odd years ago too - this latest one was a new cancer, not a recurrence. First time, I had stage 2 and was treated with Zoladex and Tamoxifen for 2 years only. It worked for me - that cancer has not come back in 24 years. So from my personal experience - and I know we're all different - this new 10 year thing with all these nasty side effects seems a bit over the top. I've now got low ferratin count to be looked into. Interesting to see other people having iron deficiency too. So now I think I should stop taking the Calcichew too!  Yes, it is difficult to know what to trust and what to do. ... View more

I am just wondering if the terrible joint pains that a lot of people have as a SE of Letrazole might also be linked to being on Bisphosphonates like Residronate. I read that it's 33% arthralgia and 10% arthritis for Residronate Sodium. Perhaps it's those of us who are taking both drugs who are getting a double whammy of side effects. I have been taking the Aromatase inhibitors for 4 years but the the joint pain and arthritic pain were so severe and killing my quality of life that I am taking a break (nearly 4 weeks so far and only marginal improvement). Am wondering whether to experiment with coming off the Residronate too. Oh, and there's the statins too that also give you bone and joint pain. Anyone had similar experiences that make them think it might be the combination of drugs causing the pain? ... View more

Sorry, part of that last post of mine didn't make sense. I meant to say : zoladex and tamoxifen together had not been researched and the combination was not protocol. It's late! ... View more

In case it is of any interest to anyone, in 1991 at age 42 and with Stage 2 bc (2 2 2) I was on Zoladex injections and Tamoxifen for 2 years only. At the time the benefits of these two together was not protocol and not researched and Zoladex was new and just going through trials (I got it on the back of that). I trusted my world famous oncologist (lucky) though, so went with it. And as you see, I am still here! That cancer has never recurred but four years ago I got a completely new primary bc. Now I am on Letrazole. In 1991 I wasn't aware of side effects and when I came off the Zoladex my periods came back straight away. With letrazole I have unbearable joint problems. (Not sure why these days the treatment goes on so long but can't wait to get off it!) Hope my story cheers you up. It's been 24 years since my first treatment. I also kept to a healthy diet, kept my weight down, exercised and stayed positive. ... View more