Hi, I’m really struggling to cope. I had ER+ breast cancer last year which was removed by lumpectomy with clear margins and no spread to the lymph nodes. It was 32mm but just 3mm was invasive and the rest was DCIS. I had 15 rounds of radiotherapy and am on Tamoxifen which has been almost symptom free for me. My periods have reduced to every 3 months and become very scant and a bit of a weird brown colour (sorry) but as I’m 47 I could be perimenopausal anyway. I had a clear mammogram in May although I was recalled which was terrifying. I do suffer with severe anxiety.
Anyway, a couple of weeks ago I started getting severe pain all over my upper body, including my breasts, back, shoulders, neck, arms, hands, wrists, even my fingers. I had a bit of a panic attack and ended up ringing 111 who called an ambulance out to rule out a heart attack. They did so and I went to my GP the next day who said he thought it wasn’t sinister, just muscle tightness and gave me Cocodamol which hasn’t really helped and I’m constantly petrified that it’s back and spread to my spine or something and I cannot sleep or eat properly and keep crying all the time. I’m reluctant to ring my own bcn in case she makes me have a mammogram again with another months wait for the results but I’ve run the helpline a couple of times and they concurred that it doesn’t seem connected to the breast cancer but my brain won’t accept it. On top my husband is angry and frustrated with me and not being supportive. I feel so alone. I’ve self referred to a physio tomorrow about the pain in my back. Please help. Thanks
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Hi Kazi1976, is there any chance these symptoms could be from the Tamoxifen? I have read of symptoms developing later. My cancer was 31mm, clear margins after a lumpectomy followed by an excision, then 5 radiotherapy sessions. I’ve been prescribed Tamoxifen 3 months ago, but still have not taken it, even though I’m terrified of the cancer returning in my bones. I wake up worrying I go to sleep worrying, it never goes away. I sailed through my surgeries & only had an itchy rash & a skin burn from radiotherapy, which are both fading now, but this anxiety is terrible. My family & friends were wonderful during my treatment, but I don’t think they have a clue what I’m going through now. I’m 76 & have read Tamoxifen symptoms can be worse when you’re older. Please post again when you find out what is causing your problem as I think we get more help from this website than anywhere else. Wishing you all the very best & hoping it is nothing serious.
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Hi, sorry to read you are struggling. I have been on tamoxifen for 1.5 years. Until maybe 3 months ago, I was fine. I have now developed a little bit of aches and pains all over, but mainly lower body. At 54 I accept it could also be menopausal symptoms but could also be tamoxifen. You say you suffer anxiety. If you are anxious, it could be making your symptoms worse. I have a close friend who suffers severe anxiety and depression and therefore has pain as he ca get very tense. He got help to relax him which helps a lot. I understand your concern that it could be reccurrance. I would certainly contact your bcn with your concern. They will always be happy to discuss your symptoms and see you if required. Yes, the wait for an appointment and any test results causes more anxiety. It causes a vicious circle, but if all clear, at least it would set your mind at peace a bit. You can then reconsider what else is causing your pain.
Hope that helps a bit. Take care and best wishes x
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Thank you so much Balchik it sounds like we’re quite similar. I haven’t thought whether it’s Tamoxifen causing my pain because I’ve seemed to tolerate it quite well until now. Something to think about xx
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I recently developed random tightness across my shoulders and had pain in my hands. There is also a sensation in both elbows that I think is the tendon rubbing. I went to the physio at my GP surgery and she thinks it is from my radiotherapy. I have various stretches to do including revisiting the post-surgery stretches to get the muscles working again. I have noticed some improvement within a week or so.
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Thank you ScientistAmafier. I gave in and left a voicemail for my own bcn who will hopefully ring me back tomorrow. (I burst into tears on the phone). I’m also due to see a physiotherapist tomorrow afternoon and I’m going to try to get another GP appointment to say my backache is still there, the painkillers are not working and and causing my anxiety to go through the roof.
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Hi @Kazi1976
I hope that you get some help and some answers , I’m also thinking that Tamoxifen may be causing your pain - it’s not as known for joint pain as Letrozole / Anastrozole but I know people who get it . Not all side effects develop immediately some appear after a few months .You could look at supplements as some people have been helped by co - enzyme Q10 / Omega 3 . Magnesium is helpful for joint pains - I take it to help prevent migraines as well and it can help a bit with stress.
Radiotherapy is another possible cause - keep trying to gently stretch your arms and upper body . Acupuncture might also help . Unfortunately once you have had BC you do worry when you get a new pain - from a psychological point of view maybe you selling or the Moving Forwards course might be helpful .
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Pressed send too soon ( again) I meant to say that you have done the right thing by contacting your BCN for help. I’m sorry that your husband isn’t supporting you , unless you’ve been there it can be hard to understand but his behaviour could be ramping up your anxiety and making things worse for you .
Sending hugs xx
Hello @Kazi1976
I’m so sorry that you are having such a difficult time at the moment, unfortunately having a breast cancer diagnosis and treatment changes so much and for many people the hardest part is dealing with the anxiety it brings.
There may well be a Tamoxifen link however as others have suggested in all likelihood the cause may well be underlying anxiety: the good news is that anxiety is completely treatable 
First thing to say is having anxiety is not your fault, it is a mental health condition which just like any other physical condition won’t just get better overnight, nor does it get better by telling it to go away by itself
You must absolutely speak to a medical professional to ensure that there isn’t a physical underlying cause of your pain, once this has been ruled out you can start treating the anxiety
I would definitely recommend a Moving Forward course which will give you the opportunity to chat with other ladies who’ve been through the same as you, you can also access Breast Cancer Support groups run by MacMillan and Maggie’s at anytime they will always welcome you no matter where you are with your treatment
As others have said unfortunately once you’ve had a cancer diagnosis you become much more aware of physical symptoms and fearing the worst is very normal in these situations: my top tip for dealing with this is using a journal facility on your phone, if something is bothering you make a note, this can help because making a note means it’s written down and (hopefully) less prominent in your thoughts and you can move on with your day, then if it’s there again repeat. The other benefit is IF it doesn’t go away and persists you can go and see a GP and then when they ask you “how long have you had this?” the answer is at your fingertips
I really hope you start to feel better soon
AM xxx
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