Many thanks for your response. What you describe is consistent with my experience and what I have found out so far, except that at this stage I still think Tamoxifen is very much involved in causing the pain, as I feel a lot better whenever I forget to take it. I am troubled by the fact that this problem is not acknowledged because that means no research is done about it.

It is true that my weight has gone up since I started treatments, but I am not particularly overweight. I do weight training to strengthen arms and legs since I am less able to do as much walking exercise as I used to. I go swimming twice a week and also do Pilates at least once or twice a week. I have now started with Acupuncture, but so far there is not much of an effect noticeable. Cooling my feet feels good, but provides only very short-term relief.

I need to understand the pain better in order to find ways to cope with it. Is the pain mechanical or chemical ? Is it in the bones, the tissue, the muscles ? If it's an inflamatory pain, why do the anti-inflamatories not help better ? Does the pain lead to a change in the structure of my bones ? What does that mean for the long-term effects on my joints ?

Hi Urte .....

My answer if very limited compared to the nurses but I will say it anyway cos 'you never know'.

Firstly I just wanted to ask if you could change to Arimidex - this is a similar drug to taxoxifen but for post menopausal ladies (but I dont know your age). This may be a thought.

Also - when I was on Tamaxifen for 6yrs - altho i didnt suffer with joint pain, I did have tremendous night time hot flushes. My oncologist and I talked about it a lot and he told me that i should ask my chemist to try giving meTamoxifen by many different manufacturers. I obviously dont know if this applies to joint pain but he said it is a drug with many additives and each manufacturer used different ones. He felt the additives were causing more side-effects than the drug itself.  I found a helpful chemist and did as he suggested - and lo and behold - the side-effects varied hugely with different manufacturers. I eventually found one where the flushes were minimal!

I really hope you get some help with the side-effects soon Urte - good luck xxx

Many thanks Max56, for you kind words. I also do have hot flushes, but compared to the joint pain, I find coping with those a walk in the park - as long as the walk is less than an hour, as due to the joint pain I do not manage much more. I will discuss alternatives with my oncologist again, but last time I did speak with her about this she indicated that the other hormone treatments available are even worse with regards to causing joint pain, so would not mean an improvement.

I spoke to the cancer nurses today who adviced that I should be reporting this as an adverse incident and contact the drugs companies. My research into the process for reporting adverse incidents indicates that it's health professionals not patients who are supposed to do them, so I feel I am rather back to square one.

I find it really baffling that despite indications being that around10% of women on Tamoxifen seem to be experiencing this side effect, my efforts in finding a solution are being met with a brick wall of silence and lack of acknowledgement of the problem even. I am now even more determined to find out why the medical community refuses to take more of an interest in this problem which is by no means isolated to my experience.

The mother of one of my friends - a GP herself - who experienced breast cancer twice and was on Tamoxifen stopped taking it after several years because she could not cope with the pain anymore. She is today living with secondary breast cancer in her bones which might have been avoided had she received better support of how to cope with this side effect of the drug.

I am scared of secondary cancer and therefore do not dare to stop hormone therapy, much as I may be tempted, as the pain I am experiencing means a severe loss of quality of life to me. That's why I do not dare just stopping to take the drug, but I know I must find a way of understanding this pain better, in order to cope better with my situation. On Saturday, the pain in my joints was so bad, that I felt depression setting in again and I have not had to deal with that since I stopped chemo.

Anyone reading this and having similar experiences, please join me in lobbying that joint pain gets acknowledged as a side effect of Tamoxifen, so that we can build momentum for more research being done into this problem and more support being provided.

Many thanks.

Urte

My first ever post, found this whilst looking for answers.

I empathise with you all, I'm 2.5 years in and my joint pain is getting progressively worse and I put it down to tamoxifen and weight.

In the past 6 months my knees and my leg muscles ache constantly, my feet hurt if I walk too far or stand for too long.  I've suffered leg cramps for months and now my finger joints are stiff in the mornings. 

Yes I'm overweight and I know this compounds the problems but exercise is becoming near impossible, (not a great swimmer) everyday life is becoming more difficult, I can't stand up and just walk I have to stand let my joints settle, stretch and then slowly get going, I'm fine once I get going but only for about an hour any longer and I suffer for next 48hrs.

I feel like I've aged 20 years in the past 2, I walk around like a lady of 73 not 53! Sorry having particularly bad spell at the moment trying to get everything done for Christmas which is taking 3 times as long and in constant pain. 

Also my consultant is now suggesting I change to  Letrozsol and I've had blood tests to see if I'm now postmenopausal, but I've heard this can make joints even worse, does anyone have experience or advise?

I take lots of supplements, glucosamine, omega 3 fish oil, calcium & vitamin D, but don't want to live on pain killers.

Thankyou for reading x

Dear All Above,

I am writing to you all together as I would otherwise be sending the same long spiel to all of you individually. I was diagnosed with Mucinous or Colloid breast cancer 7½ years ago. This only affects about 1% of patients and is supposed to be one of the less aggressive forms of the disease.

 I had a lumpectomy, but shortly after that, developed a lump in my other breast, which my surgeon ignored. The pathology result post-surgery stated that I did not have a clear margin left. My surgeon assured me that he had noticed this at the time of my operation and had removed a further section of tissue as a result. He then wanted me to have radiotherapy, but I refused to treat one breast whilst ignoring the other. I did however take the Tamoxifen prescribed, because I felt that this was treating both breasts.

After 11 months, I was referred to another surgeon, who did check out the lump in my other breast. Fortunately, it was benign. Three months later I found another lump in the original breast, but this time I wasn’t so lucky. It was another primary of the same type of Cancer. I had a double mastectomy and then changed to Letrozole, which I took for 6 years and only finished taking earlier this year.

Both drugs have brought their problems. I am 68 and post-menopausal. My Cancer was also ER and PR positive and HER2 negative, with no DCIS (Ductal Carcinoma in situ). I had 6 lymph nodes removed at the time of my lumpectomy and all were clear. My second surgeon tried to remove some lymph nodes from the other breast when he was doing my double mastectomy. He was aware that taking too many lymph nodes away could cause further complications, so he was cautious in what he removed. In the event, he only got fatty tissue and no lymph nodes. Because all was clear in the other breast, he decided not to pursue this any further, as the lump in the left side , although growing bigger, was still benign.

Very soon after starting on Tamoxifen I experienced side-effects. The three most noticeable initially were horrendous night sweats, joint pain and dry mouth. I was eventually given an anti-depressant which my specialist nurse advised that she had seen good results with in reducing the sweating. This helped tremendously, but my GP was not happy to have me on these long-term. I was also prescribed Gabapentin for the pain in my arm and legs, but this didn’t reduce the pain. It did however produce side-effects in the form of urinary incontinence, bowel problems and gross weight gain. I was then changed over to Lyrica, which did help a little with the pain, but this was at the maximum dose and it wasn’t long before I started to develop additional side-effects.

My joint pain continued to worsen, but I developed concentration and memory issues too and the weight continued to increase. I also developed Lymphoedema in both arms. I have to wear elastic sleeves on both arms for this and I attend a lymphoedema clinic for 2 weeks in every 12 for manual lymphatic drainage and compression bandaging.  This hasn’t reduced my measurements, but, so far, has prevented it from getting any worse. I stopped taking the Lyrica  after 5 years. I tried using a Tens machine, Acupuncture and attended a pain clinic, where I tried mindfulness and exercise.  Sadly, none of these helped and I was prescribed Bu-Trans patches, before I eventually had to have both my knees replaced 2 years ago. The Bu-Trans patch has to stay on for a week and must be placed on the upper torso. The adhesive in this caused an allergic reaction and I had to try and conceal this with clothing as it presented in the form of a bright red patch which lasted for 2-3 weeks each time.

The operations have helped my knees, but my other joints and bones are still sore. My left knee has now started to bother me again. Since I had the operation both knees, but especially the left have clicked with each step I take – this in turn had an impact on my hips and my lower back. I have had a lot of trouble with this pain.

I have seen a few physiotherapists through the years. They have all given me exercises, which I do religiously, but they told me that there is nothing else that they can do. I also attended exercise classes twice a week to improve my strength and balance. The initial class was run specifically for people who had health problems and they all had to be referred by their GPs. After attending this class for 4 months, I moved on to a slightly more taxing class. The second class is a weight reduction class. I get weighed every week. My waist is measured every second week. For about a third of the class we discuss healthy eating, then for the latter two thirds we do exercise. So far, I have lost 5 stone, but my joints are still no better. I stopped taking Letrozole in July, after taking it for 6 years.  So far, I am still having night sweats and the joint pain is increasing.

I have also had problems with my eyes whilst taking Letrozole. I had two cataract operations 3 years ago. I had to have a third because the lens that was placed in my eye to correct the astigmatism was 25% out. Earlier this year I was informed that I had glaucoma and I was prescribed drops which I will have to put in my eyes every night for the rest of my days.  That was 8 weeks ago. Since then, I have lost the sight in my right eye and the left is failing. I have been placed on the list for laser surgery to both eyes, but I understand that the waiting list could be as long as a year before I get surgery. I was  also given a low vision magnifier to help me see, as the new glasses that I got only 8 weeks ago are of no use on their own.

This means that I cannot work, drive, see articles or prices in shops, etc. I have now got to resort to a disability scooter or a walking frame to get around, but I am still here and that is the important thing. I can still get out and about provided that I have my aids to sit on when the pain gets too much. I am fortunate enough to have been given a Blue Badge to help with parking and I have a very supportive husband who has to drive me everywhere at present. I am told that my sight should improve once I have the operations.

I feel about 100, having to use all these aids and get some very strange looks at times, but I am grateful that they still help me to lead a fairly full life. Two years ago I started taking strange fitting episodes. My cardiologist put these down to medication I was taking for high blood pressure and, since I stopped taking this, the fits have stopped. Now my blood pressure is sky high and I am due to see the cardiologist in the New Year to get a new medication for this. In the meantime, my walker has a seat on it and I can sit down as soon as I feel these coming on.

I guess that what I’m saying is that I have had problems associated with most of the treatment that I have had, but I’ve had an additional 7½ years that I might not otherwise have had.

 None of the cancer treatments are pleasant. Most of them come at a cost, but if that cost is your life, surely the risk is worth taking?

Kind regards,

Jolamine xx

Hi Hilljills,

A very warm welcome to Cancer Chat.

Have you checked with your consultant that all of the supplements you take are ok to take with your current medication? I had to stop taking some of the ones that I took, as they react with cancer meds.

Kind regards,

Jolamine xx

Hi Nikkit,

I see that this is your first visit to the forum, so a very warm welcome to Cancer Chat.

Your description of how you are treated with pain, obviously matches Urte's and that of many other people.

As Nurse Jean says "joint pain remains a challenging problem for many women who are having hormonal treatments for breast cancer", but sadly, they haven't found the solution yet.

Everyone reacts differently to different treatments and, I certainly found that Letrozole made my joints worse, but this might not be the case with everyone.

I do hope that you find a solution to the pain, but I fear that it may be something that you have to learn to live with.

Kind regards,

Jolmine xx

Hi Hilljills

Iam sorry to hear you are experiencing joint pain similar to the ones I described. I am still on Tamoxifen and I still have joint pain. But they have decreased, particularly the pains in my feet and my range of walking has become longer, I can do 2-3 hours now, which is great. The improvement occurred gradually. I am still taking a small dose of Diclofenac as tablet, but have found that Voltarol which has Diclofenac in salve format has helped a lot and ensures I do not have to take so much Diclofenac through my stomach.

I have used Voltarol on the affected joints before going to bed and again in the morning.

More recently, I have discovered Magnesium oil, which again I directly use on the affected joints.

I had tried acupunture but have not had any positive results from that unfornately.

Essentially, what I am trying to tell you is, keep talking and looking and be brave to try out things, and life may get better.

The interesting thing was that I got a totally different approach when my oncologist retired. Her successor immediately acknowledged that joint pain can be a side-effect to taking Tamoxifen. Curiously, her acknowledgement helped me accept my situation with better grace, and since then, my situation has considerably improved.

I will come off Tamoxifen in February, and she also said, I may again experience a bad phase of joint pain, as my body adjusts to not having hormone-depressants anymore. Well, I will have to see.

Meanwhile, all you brave women out there, keep talking, it really helps and sometimes things get better.

Take care

Urte