Hello! I wanted to check in and see how you are feeling now. Has the pain subsided?
I'm in the exact same boat--stage 1 in 2013 with bilateral mastectomy. stage 1 recurrence in 2018 at the 5-year celebration mark. stage 1 recurrence in 2019 with redo of the mastectomy. I've chosen strength over length to be fully present emotionally to my family. Now the new oncologist has made a logical case for tamoxifen based on his concern for distant recurrence. But I am strong and love life. And...EVERYONE I know on the drug has significant pain but the studies still only mention 10% of women struggling with joint pain. Maybe I know all of them? 🙂
So when I read your post, it felt familiar. I hope your journey has taken a turn toward pain-free living.
Thanks for all the help - I am on Tamoxifen for 8 months and struggling with ankle, knee and foot pain. However, I am sticking with it for 10 years as advised by my oncologist as I feel it's better than getting the cancer back! Keep well everyone x
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Hi Ladies, I stopped Tamoxifen after 2.5 years as my joints were so bad I could barely move, the pain and stiffness did ease initially but I continued to have issues with my knees and now 2 years on I have advanced arthritis and now am needing both of them replacing , the first in October.
Who knows if I would have been in this boat without Tamoxifen but having had no issues prior it does make me feel it’s played a part, it’s not an easy decision to make and I will always have an element of what if niggling at me but it was right for me at the time Xx
Thank you Moonwing and the very best of luck with your joint replacements. I've decided that I will not take Tamoxifen - especially after seeing the results of the pre-surgical staging bone scan. I have varying degrees of arthritis from my shoulders to my feet!!! With the drug only likely to give me a 5% benefit, I'm opting for quality over quantity of life.
Hi, Tamoxifen sure is a problem for a lot of us. I've been on it for about 9 months now and the aches and pains still continue, feet, hips, butt, shoulders neck elbow. So stiff if I sit for a, while or when asleep... Well I say asleep... The sleep I do get is punctuated with stiffness and hot flushes. Also my eyesight has worsened and opticians say it can cause eye problems. But I am remaining active, it helps to keep moving but I do feel 150 instead of 49!
I take glucosamine and chondroitin and if I miss a day... Big I know about it.
If anyone knows of a cure for the stiffness. Let me know
Hi Waimari, in the end I decided against taking it. I asked the oncologist for percentages and she said that - over a 10 year old period - there was a 5% chance of the cancer returning but a 3% chance if I took Tamoxifen. Those odds didn't seem that different to me so, given my age, I opted for not taking it. I am having a hip replacement next month and a knee replacement 3 months later. My joints are so bad that I am glad I'm not taking it. My breast clinic check up is in November so I will face the music then, so to speak! Good luck whatever you decide and stay well ❤️
Hi Moonwing, your post really caught my attention because I'm facing a similar situation. I already have severe osteoarthritis (bilateral hip replacements) and am about the same age as you. What decision did you finally come to in regard to taking an anti-estrogen?
OMG.... I can relate I have been on Tamoxifen for 2 1/2 years. I can't bear the pain. My joints ache ache ache. My knees and legs hurt so bad I can only sleep with ice packs and pain meds. I have had x-rays, MRI, and etc. Nothing.... they say bursitis, arthritis. All I know is I didn't have this pain before Tamoxifen. I fell like I also feel like I'm 150 years old. I can't get in or out the car, turn over in bed, get out of bed, sit on toilet, I can't put on my pants or shoes. I use to be very active but now I can't do anything but take pain pills and almost cry...…. I have no sex drive, even if I do get the urge I can't get pass the leg pain to enjoy. Please let me know if stopping helped you, I asked my doctor last week he did not advice to for at least taking it 5 years. I may not make it. I am serious, this is worst than going through the cancer treatments.
I have come off Letrozole, followed by Anastrozole on account of an allergic rash (with the former) and a long list of adverse effects after 9 1/2 weeks of the latter. The AEs all seem to relate to oestrogen depletion, so I am considering turning down Anastrozole and Tamoxifen, as their SEs appear to be very similar. After alI, oestrogen depletion is the goal of the Endocrine therapies.
As I have a long history of problems with hormonal imbalances, osteo-arthritis and depression, at times severe (of the biochemical form rather than a distess reaction to life events), I am wary of trying Exemestane or Tamoxifen. The percentages do not inspire me to persevere with what would almost certainly be a low quality of life, as they look only at the the pathology of the patient's breast cancer, allow only for lifespan but give no indication of the probable causes of death, and take no account of general health, lifestyle, other medical factors. As a former maths teacher, I know statistics are only a general guide, and it isn't helpful to apply them to the individual without interpreting them very carefully, taking a holistic view of the person's circumstances.
Recently, I saw a clinician in my local teaching hospital's Breast Unit. This doctor has spent 20 years in both the Breast Unit and the adjacent Cancer Hospital, working closely with specialised pharmacists. When I said I didn't want to try Tamoxifen, she screwed her face up in horror, saying: 'Oh no, I certainly wouldn't want to take Tamoxifen!' After a few seconds, she recollected herself and observed that she had known many women who have coped well with it, bit it was a bit too late! I didn't ask her about the numbers who hadn't.
You might like to look at the information on Tamoxifen on the electronic medicines compendium, which gives infoformation about drugs to professional medics. Here is the link.
Enter Tamoxifen in the search box.
I am seeing my Consultant Medical Oncologist this Wednesday, with I hope a specialised pharmacist. I'll report back the outcome.
Do make up your own mind and don't let any doctors push you into treatments you feel strongly against. Quality of life is very important and it is we who have to live with the adverse effects of drugs, not the specialists prescribing them.
Is there anyone who has decided NOT to take Tamoxifen? I am currently going through radiotherapy and have deferred taking anything at the moment. I am almost 72 and have severe osteo-arthritis - I need a hip and a knee replacement but currently need to be clear of all cancer treatment. I am really afraid of my joints being damaged any further. The percentages with or without Tamoxifen do not seem that different, and in view of my age, I'm not sure if I can see any future benefits.
hi ladies.. I am suffering with tiredness, joint pain but over the last few weeks with severe sole of feet pain. I have been on tamoxifen for about 15 mths now. Oncologist states tis hormonal as estrogen an progesterone r like WD40 for our joints. I am stage 2b invasive lobular and Ductal. I am very lucky as caught early. However just wish I cld get at least a few days of nothing hurting. No point going to GP as they just look at me as if to say” wha am I supposed to do about it” oncologist who is brill but again just reassures me that I have an excellent prognosis. I am so fed up, mayb just feelin sorry for myself. I am active, walking an gym. Thx for listening guys.. hot flashes hae jumped into overdrive even though they say I am post menopausal now. I hae just turned 52.
Play safe... that it was I would have thought.
Todays appointment was with the senior GP and he did at least agree to do something. Maybe the cramps while on Tam caused a deep knot and a full physio appraisal will get to the bottom of it and free it somehow. But maybe not and I'll push further from there.
thanks for the response.
As below, seen Dr today. He is thinking it is a muscle knot!!!
But I guess I need to let him start somewhere simple before going in all guns blazing.
I am TRYING to get someone in the medical proffesion to check things out (I even paid for a private referal last year and was referred to a neurologist who tapped my knee, got a reflex, and decided everything was fine).
Tired of the continual low grade aches and everyone throwing in their thoughts and dismissing what I'm saying.
Tired of it all.
It is a long time since I have been here but I am at rock bottom and doing the Google thing again.
DCIS diagnosis end 2014. Surgery Feb 2015, primary node OK, extra margin taken Mch 2015, Radio May 2016, no chemo. Age 52, postmenopausal.
Started Tamoxifen June 2015. Was told to keep active re DVTs and I thought that would be easy as I am a marathon runner but I started developing horrid leg cramps at night by the end of 2015 and running started to feel like running through treacle with scafolding on my legs.
Prescribed quinnine in mid 2016 as I was getting married and couldn't face the cramps every night on honeymoon! Quinne stopped the cramps but was only a short course and wouldn;t be extended.
I decided to stop tamoxifen in Oct 2016 with my Oncs agreement.
Aug 2017 I was still getting achy calf with stabbing and 'pre' cramps (I am now an expert at recognising a cramp about to happen so can stop it in a 1,000's of a second of it starting) so went to my Dr. I got nowhere with that because I still run marathons so "it can't be that bad"..... (I am a STUBBORN bugger and I will not let all this stop me).
Aug 2018... I have been back to the Drs today as another year on I am still experiencing the stabbing, achy calf etc but also have achy hips and thigh bones. I saw my Onc 2 weeks ago and was told I really needed to speak to my Dr.
Dr thinks I have a deep muscle knot in the calf. Asked if I stretch !! asked if I replace salts when running !!! asked if I do yoga / massage.... yes, yes.. yes..... yes...
I am fed up. 2 years after stopping tamoxifen I wish I had never started it and 2 years after stopping I had hoped the 18 months of it would have worn off by now.
I take magnesium but not regularly. I do not want to mask an issue if there is an issue that needs to be identified. I find a bottle of wine or a few large G&T (yes, quinnine) helps but medicating with excess alcohol is not the answer either.
I am fed up. Thank you for reading.
please se let your doctor know right away! My pain started quickly and despite multiple medications to reduce it, within 3 months I could barely get out of bed. I stopped the tamoxifen and almost 2 months later still have pain and numbness. I am seeking help from another doctor on Friday. Best wishes to you!!
hi just started taking tomoxifen just over a week ago . got pain in fingers and cant hardly bend them . also falling asleep a lot. have discomfort in my pelvic area x
Sorry to hear about all the issues you are having with the pain and swelling. I was on Tamoxifen for 2 weeks when I started with body aches that progressed to where I could hardly walk by Christmas. The doctor said it wasn't the Tamoxifen, but when I stopped taking the medicine there was immediate improvement. When my primary doctor put me on prednisone for a week, the pain was almost entirely gone. The swelling in my hands and feet have improved by about 90% . I am hoping that with the next round of prednisone that it will improve more.
Best set of luck - lora
I’m new to this forum, I was looking for info about Tamoxifen and lower leg swelling and pain, and came across you all.
I have been on 2 other cancer drugs for breast cancer, had 2 months off at Christmas off all drugs, as I was experiencing joint pain and hair loss, and now been on Tamoxifen for 1 month. I am really suffering with leg pain, it’s crippling and now my calf is 2” bigger than the other one! I went to my GP for help, he told me to go straight to ER and they thought it might be Deep Vein Thrombosis. After a weekend of injecting myself in the stomach, I have just had a scan at hospital which showed no blood clot, and they have no idea what is going on and sent me home with painkillers!
I believe that it’s the Tamoxifen making me ill, so I have made the decision to stop taking anything at all now, I want some sort of quality of life, and that’s not achievable with these cancer drugs.
I just wondered if anyone else has experienced this problem?
Starry waves -
i am am so sorry that you are going through the pain and all the side effects!! It is a horror on top of everything else that comes with a cancer diagnosis. My oncologist was not happy that I stopped the tamoxifen and Effexor as I was stage 2 with a very aggressive cancer. However my surgeon said they caught it very early, my margins and lymph nodes were clear and my risk was low. Before cancer I was a kick ass active woman, and tamoxifen took away 'ME'.
I will say that at the end of day 2 on the steroids and the pain is greatly improved. i hope you will tell your docs you quit the meds and ask if prednisone might be an option for you to help with the pain. I will think good thoughts and send prayers for your pain to be relieved! Big hugs-
I was on Tamoxifen for 14 months. Things were okay at first, but the past six months have been severe joint pain and leg cramps at night. I feel like 150 years old. It hurts to get in and out of my car. It hurts to turn over in bed. It hurts to get out of bed. it hurts to get up from the toliet.
As an avid yoga student for 15 years, I feel like this drug has robbed me of my passion for yoga and feeling like a normal human being. I have extreme hot flashes and also vaginal discharge and no sex drive. No fun.
I stopped Tamoxifen on January 2, 2018 cold turkey. I have not informed my primary care doctor nor my oncologist. Why? Well, they both do not agree with me stopping this drug. I was stage 1 estrogen postiive and had double mastectomy, tram flap surgery, no chemo and no radiation. I was healthy and happy until cancer treatment. Tamoxifen is a game changer. It made my skin creppy and my hair is thinning. I thought of dating, but my God, I can barely move around let alone think of moving on in life.
So yeah, I would like anyone who can chime in who can relate to my story.
I am vegan since summer 2017. No more coffee, no alcohol, no alcohol, no sugar. Sounds boring right? Well, I am trying to be so healthy, but feeling so crappy. 😞
Look forward to any feedback.
Hi.. Coming from Michigan here. I am one of those ladies who has opted to stop tamoxifen because the pain was so bad I could barely get out of bed before Christmas. My oncologist said it is not the tamoxifen causing the pain, but in 5-6 weeks, it is markedly improved. My primary care doctor put me on a steroid pack to help reduce the inflammation and day 1 is already bringing more relief. My pharmacist mentioned a sediment test that your doctor can do before you start tamoxifen, or a baseline at any time and then repeat the test to measure the infammation over time. I wish I had known to ask before I started the med.
I experience foot pain pretty constantly and have struggled to find shoes that would help me alleviate the pain. Well, i have to say that I have found them. They fit well. They have reduced my heel pain as well as my fasciitis symptoms. I can walk much easier and longer now . So happy I got these shoes! orthofeet do the job!
Thank you very much for your advice Jill, I shall get onto that. She has had her NHS Predict results and the hormone therapy isn't crucial but I suppose if the side effects aren't so bad then she will want to do all she can to keep the cancer away. Might just take some playing around to see if one type of tablet agrees with her more than another.
Thank you again 🙂
Hi y'all from Dallas: Just wanted to throw out a couple of ideas. I was on anastrozole for 21 months and developed very severe joint pain that basically crippled me. My onc took me off it and sent me to the rheumatologist. First, the bottom line is that they do not know why hormone therapies cause joint pain. Period. That is why everyone is hearing so many wacky theories from it's all in your head to it's just normal for post menopause. There's also a theory that the therapies bring on arthritis for those who have a genetic predisposition to it. I can tell you that my mom and grandmothers all had arthritis, and it was nothing like the disabling severe pain and swelling I experienced. In the 6 months i've been off it, the pain and inflammation have rapidly diminished, which is what happens for most patients. Does osteoarthritis do that? I don't think so. Second, for those ladies who have lower leg muscle pain and cramps, this is one of the symptoms of hypothyroidism. Your blood levels of thyroid hormone may be ok, but both estrogen and tamoxifen bind to the same receptors as thyroid hormone, and can block sufficient uptake of TH. So all three oppose each other. I know this because thyroid disease runs in my family, and several people take both Synthroid and estrogen. They have to be carefully balanced or you get the symptoms of hypothyroidism. Foggy brain, exhaustion, lower leg pain, weight gain, etc. I suggest getting your oncologist to refer you to rheumatology to manage the pain and inflammation, and to endicrinology to check out the thyroid disorder symptoms.
Hi I'm wondering if anyonecan help me.
My mum would like to talk to her oncologist about changing her hormone tablet. Does she have to wait for her next scheduled appointment with her oncologist or is she able to ring up and request an appointment?
had my first oncologist appointment this morning. I know she wants me to take Tamoxifen so I raised the question of joint pain; she shrugged it off and said she'd never heard of it as a side effect. She quoted NICE guidelines and statistics.
I wonder when someone is going to take this seriously?
I have been on Tamoxifen since 2012 - only problem up to that point was the hot flushes and weight gain. The team asked me to go on the extra 5 years trial to which I agreed.
However over the past 6 months I have been experiencing foot and lower leg pain. Symptoms are really stiff feet and ankles on awakening ...I go downstairs like a 2 year old, two feet on each step and very slow - I remember the days when going up and down stairs was automatic but now each step need planning!! The other problem is that my knees suddenly give way without any warning ...and they are painful too just not as bad as my feet. The pain seems to be centred on the tops of my feet like a strange cramp - anyone else???
I dont know if its all just ageing, the weight vain or the Tamo ...something I intend to ask in my next consultation in July.
Wishing everyone well xx