I stopped taking Tamoxifen after 3 years. Can’t take the horrible side effects any longer. I’m scared of cancer coming back, but my quality of life on it is terrible.
Hello Ladies,
Is there anyone on here who can testify that they went off tamoxifin after 5+ yrs and was fine? It’s nice to hear some positive messges. I’m almost to my five years and i’m still on the fence. My time on tamoxifin has been fairly good. I had non to little side effects which was hot flashes which eased up now, and occassional cramping in legs or arms, oh yea brain fog. Anything else that i have seen or read i haven’t experienced it. Now i know like most medication when you go off your body has to adjust to not being on it, so there may be some changes. I do believe it should be weened off instead of just a sudden stop. Just like taking predisone you start off small dosage to max amount, then you work your way back down to small dosage when it’s time to ween off.
Hi
My first time on this Forum. I’ve been on Tamoxifen for almost ten years. I’m due to come off in 2019, I’ve found the side effects bearable and gave up visiting my G.P as always had more drugs thrown at me and not much understanding. I was diagnosed with Invasive Lobular Carcinoma so considered it important to take the drug. I’ve asked to have my prescription reduced now to 10 mg to prepare my body for stopping in September 2019. Im finding the reduction hard as I’ve become a monster. Im sad/ indifferent to everything. Even writing the word sad has bought tears to my eyes. Not normally an emotional person. Anyone else out the with similar??
Nanny Al
Hello have you experience any abdominal pain while on tamoxifen and blotting and some weight loss
Hi all, just to say that I finished 10 years of Tamoxifen weekend before last. Advised to just stop, no need to wean off. Since stopping I’m having headaches, migraine auras, more frequent hot flushes, nausea and muscle spasms. Oh, and so hungry. Wasn’t expecting any of this 
Thank you Silverraynefox, that is sooo good to hear - onwards and upwards Tamoxifen warriors! ? xx
Hello! I am 45 and I stopped tamoxifen after 5 very long years, I stopped in March and for over two months the hotflushes were much worse than before. I was feeling really down. Then all of the sudden the hotflushes stopped and I feel more energetic. As well my period has come back, and I have been able to lose a few pounds too! So it seems that the body is recovering well. Hope this help! Good luck! X
Why were some patients told 5yrs on Tamoxifin and other 10yrs? I was dx in 2013 I was told 5 yrs but i’m noticing some ladies on here did the 10yrs being dx prior to 2013. Just curious to see if anyone know. Seems the Dr’s don’t they’re just going by studies. Now I know most recent dx ladies will be told 10 yrs because that’s what they are saying now. But us ladies from earlier dx we were told 5yrs nothing else, no possibility of staying on 10 or longer at least not me.
Sloyd66, I was diagnosed 6 years ago, I was 39, and initially I was told that I had to take 5 years of tamoxifen, then it was increased to 10. My life wasn’t good, bad hotflushes, really bad sleep…not energy at all. It was my decision to go to talk to the oncologist to stop it after the 5 years. The oncologist considered my age when diagnosed, type of cancer, the treatments I had (surgery, chemotherapy and radiotherapy) and it came out that the benefits of taking it another 5 years, in my case were very small, so I decided to stop it and have my life back. I still have the yearly mammography to keep it controlled. X
Hi ann-m
I got told at beginning to that would be on tamoxifen 5yrs & now been changed to 10yrs, I’ve been quite lucky on it a few side affects but not many, stick to the same brand. A few years didn’t have a period and now it comes and goes, you just never know when it’s going to happen, have put on a stone in weight, the flushes were awful at the beginning, get the odd one, sore joints & tiredness, I got a chillow pillow then the magnet to try and help, which it did. I will ask my consultant next time I see him if taking it any longer than 10 yrs is a good thing or not, I know a lot of people are so happy coming of it, I just don’t know how I feel about it when time comes to stop.
I was diagnosed with BC in 2011. The year my oldest was going away to college… , I was 45 years young. In the prime of my life. Had just lost 30 pounds of baby weight and was so full of energy it was unbelievable.
After having a mastectomy on one side, reconstruction on both I was put on tamoxifen. Like most of you, I was told 10 years. During the second year I started experiencing terrible side effects. Joint pain, extreme tiredness, bitchy beyond belief, crying, not wanting to get out of bed, and complete craziness (full blow depression if you ask me). I complained and complained. The doctor changed the doses from morning to the evening, from the evening to twice a day at a lower dose, which seemed to help some, but not enough for my liking. Still many aches and pains, still uneven temper and uncontrolled crying at times. I was monitored every 3 months. Periods came sporatically. This lasted for over a year. I was too tired to do anything and gained back 40 pounds. I was having yearly internal sonograms to check for uterine cancer (a 2% risk on tamoxifen). Each time I was subjected to “issues” and had to have additional testing. The additional testing lead to nothing. So nothing was ever done. Body started to deal with the tamoxifen within the last year a bit better, but still achy and tired, just not as cranky.
Here we are 7 years later almost to the day. My last internal sonogram has once again found some “issues”, leading to the additional testing. The MRI has resulted in suspicious abnormalities, so much that my oncologist has told me to stop the tamoxifen and see a gynocological oncolgist. (Waiting for that appointment). So, now that my body finally stopped fighting the tamoxifen over the last year, I have been removed from it and starting the blues all over again. Tired, cranky, and just in a completely blah kind of mood all the time.
Sorry for rambling on and on. Just wondering if anyone else has had all of these issues and if I can expect to get back to my pre-cancer self anytime soon? :(
question for the ladies that are off tamoxifin. Did you loose hair or eyebrows and if so did they grow back after you got off the medication? My eyebrows use to be perfect and now i barely have any. And what about weight gain did you go back to your pre weight size before tamoxifin?
Coming up on my five year mark for the tamoxifen. Dr wants to test the original tumor to see if it’s better to go the ten. Im almost resigned to stop anyway. Im not sure the benefit is that much more. Diagnosed stage 2 b on right and insitu on left. Double mastectomy, bad reconstruction, hysterectomy, oopherectomy, salpingo. Positive BRCA. Then my gallbladder shut down. I’m really hoping for a good outcome after stopping. I have horrible hot flashes and leg cramping. I’ve gained weight and my energy level is just not what it should be. Hre’s hoping for the bet.
I am 71 and have been taking Tamoxifen for almost 5 years. Lots of hot flashes and difficulty sleeping. Worst is fuzzy brain and sometimes emotional roller coaster. Mammos and exams every year are all okay. No one will give me a straight answer as to my risk if I stop Tamoxifen after 5 years.
Original dx was Pleomorphic Lobular Ca in Situ. Had modified mastectomy, but no chemo or radiation.
Any advice or suggestions are welcome! Thanks…
Hi…Iv been on tamoxifen 7 years after stage one cancer in 2011…I had a right mastectomy.Later on had the right one removed for my own reasons no cancer…Iv had no weight gain on this drug or side affects until now. Im full of muscle pain and pins and needles in my legs and hands. Was a very energetic lady 5 weeks ago now I ache all over and live off paracetamol and ibuprofen cream…Iv asked to come if tamoxifen to see if this drug is the course of the aches and pains…im really confused.My doctor has written to my breast surgeon asking if it’s ok to take me off it .In panicking coming off it incase my cancer comes back x
Hi I am 68 yrs old just had surgery. A lumpectomy , I was stage 1 cancer , radiation for 3 weeks and am recovering from the radiation burning.tI’m afraid to start taking tamoxifen because of all the side effects it has . Has anyone opted not to take it after surgery? Very confused and scared.
This is for all my sisters having new symptoms after coming off Tamoxafen,
I just started on Tamoxafen. I am also a Neurologist, but not an oncologist! Tamoxafen helps reduce breast cancer recurrence by blocking estrogen binding in the breasts. In other parts of the body, it acts like estrogen. I know it helps build bones, and works like estrogen in the pelvis, after discussing symptoms with gynecologist.
The headaches he’s and dizziness sound like symptoms of estrogen withdrawal- similar to what happens in menopause. This can cause hot flashes, insomnia, irritability, migraine, anxiety, depression, etc. If side-effects are bad, it is a good idea to discuss gradual tapering of Tamoxafen with your doctor. Everyone is different, but the body adjusts better to gradual changes.
Another possibility is that your symptoms are due to Vitamin D deficiency. To the body, Vitamin D has a similar structure to estrogen. When you stop Tamoxafen, you stop the estrogen effects it had on some parts of thebody. If your Vitamin d level is low, supplementing Vitamin D3 May help reduce your symptoms. This should be supervised by a physician, as too much Vitamin D can also cause problems.
I hope this helps! You are all helping me feel less guilty for how tired and listless I am! Blessings to all of you! Braindoc
Hi I’m new to this forum as I think when I got diagnosed back on 11th April 2018 i went into denial as I didn’t speak to anyone really about the outcome. I was 40 and had been feeling very unwell for a year and was down to 6 stone. I’d had a neck problem and had a little lump on left side of my neck that would swell up and down. Was scanned and told a sebaceous cyst. I only found the lump as it was painful. Was assured nothing much there by doctor but would send me for a biopsy. 2 weeks late I had Stage 1 Grade 3 invasive breast cancer. I didn’t care. I almost felt I had know for a while. Lump on neck was a swollen. Lymph node. In a daze, swept up in the rollercoaster, my mum pretty much talking to the doctors as I just didn’t understand. I had a lumpectomy, 4 weeks of TC chemo regime and I just finished radiotherapy 10 days ago. Been given Tamoxifen. I suddenly feel like I’m 80. I’m so tired I can’t even go back to my career as a dental Hygienist full time. Joint pain, muscle pain, uncontrollable crying, numbness and swelling in left arm as I had a SND which were clear but been told I have lymphodemea-another life long condition, I’m depressed. I am trying counselling. Against my morals I’ve started a very low dose anti-depressant. My cancer is extremely hormone receptive so was made to feel Tamoxifen would be my saviour. Didn’t read side effects. I’m blistering from the radiotherapy so my holiday to centre parcs is looking like I won’t be swimming. I turned 41 on the day of my last radiotherapy. I live alone. I rent. I have no partner. Not many friends. I don’t get out much. I have anxiety. This was not me 3 years. I don’t recognise myself. I now get cysytisis despite drinking 3 litres of water a day. I have problems with my bowels. Today I have not taken my Tamoxifen. I still ache but had more energy. I don’t have a life to fight for. So I am taking my chances as just maybe I’ll get a few years of feeling like pre cancer me -I’d happily trade another :40 odd years just for a few pain free and happy few years. Sorry not very positive but I wish I’d asked so much more. I would have possibly bypassed some of the treatment. I feel ungrateful and I’m sure I’ll get a backlash for my comments but I just wanted to say or at least write out my feelings. Maybe I’m not alone
Thank you Appletree. I get confused with all the numbers. I might try this calculator thing! But my results were ER8/PR7/HER negative LVI negative oncotype score 23. So I am well aware I need a endocrine therapy. I’m permanently in agony going for a wee. Plus all the symptoms listed below and I’ve only been on them 6 weeks. If anyone knows the way to look at stats to see if I could just come off it. Again I don’t have children and no dependents. Just an12 yr old cat who hates me! So I’d happily take a chance. Can you take breaks? My oncologist is lovely but he just sees me as young and wants to do the best he can which I understand but he doesn’t understand how depressed I am and that I never cared about having cancer (sorry ladies) as I was already severely depressed and saw it as a way out. I still do. Any suggestions?
Thank you. It was my first week back at work as well and I was so tired after just one full day and two half days. I chatted to my oncologist and I’m due to see him in clinic in a few weeks. I will take my mum as she actually is supporting my decision to come off the Tamoxifen or at least take a break and see how I feel. I also have been given two different brands and I know some are worse than others. Just don’t know which! I’m kinda joking about my cat. She’s very intuitive and the night before my results she climbed on my lap (a rare thing) and purred. She hates that I spend my days of laying in bed so she jumps on me. Particularly the breast that is affected so it gets me up. My depression has only really been last two years, caused by major events, losing my Nan, a nasty violent relationship, the death of two young friends. I wanted to trade places with them and became morbid as I didn’t understand how a healthy 35 year old lady (on her hen night) went to bed and never woke up. Her young children found her cold. Totally off topic but just trying to explain how I’ve come to view life. It’s cruel, it’s hard, it’s overwhelming. Made a little easier when you have a partner but being single and horribly lonely I am desperate to just have a few healthy happy years. My oncologist knows my medical history-I felt brushed off- that I should be grateful for all that has been done. He said he had to fight with the “board” to get me chemo so I felt rude complaining -I had a couple of moments where I said I wanted to stop. But he is very tunnel visioned. As for breast care nurses. I was not assigned anyone specific and in my area it’s difficult to get to speak to them. Hadn’t known about the breast cancer nurses on here. I’ll give them a call. Thank you for your advice. I feel happy deciding to stop as the pain in my hands is affecting my work and I love my job as I meet people all day and it lifts my mood. Currently living on cystitis sachets, wearing compression gloves and unable to stay awake past 8pm. To think I was an insomniac before all of this!!! Peace and love to all you ladies xx