Tamoxifen for Breast Cancer User Reviews

• Thank...
• Taken for 1 to 6 months
• October 30, 2016

"I was diagnosed with a small tumor on my left breast (stage one, grade one). Thankfully, early detection at age 41 made my experience much smoother. The toughest part so far was the early tests and biopsies (only one malignant lump was found). The surgery was a breeze. Radiation was taxing, but I am so thankful that chemo was not necessary. So far, after 3 months of Tamoxifen, I've experienced only one side effect (the occasional hot flash). I have been very lucky so far and hope that cancer never comes back. I was so against taking Tamoxifen, but I am glad that I gave it a try. Stay strong everyone, and I hope this encourages other young BC survivors."

• Eve
• April 13, 2019

"My mom took this drug for 5 years, and in 2017 was diagnosed with a rare form of uterine cancer called uterine carcinosarcoma. Was her uterine cancer caused by the tamoxifen? My mother was a beautiful 61-year-old woman that was full of life, but sadly, I lost her because of tamoxifen. They say it's rare to develop uterine cancer from tamoxifen, but I just lost my mom. It's not that rare; do your research, a lot of women have been harmed by this drug."

• I...
• Taken for 6 months to 1 year
• August 16, 2015

"I've been on this drug for nine miserable months now. I had said I would try it for one year, and I'm not sure I can make that. It appears that quality of life is not something my doctor cares about. It's almost as if he's being paid by the tamoxifen people because he won't even listen to anything negative about the drug. My hot flashes are unbelievable. My joint pain makes it difficult to walk. I haven't slept in nearly a year. This drug makes life not worth living."

• Jules
• Taken for 6 months to 1 year
• February 25, 2019

"About 3 weeks after starting tamoxifen, I would wake up at night with night sweats and just insomnia. I noticed that I was definitely more hungry and craving junk food, which in turn caused me to gain about 5 pounds. I could have lived with these side effects, but then I started flying off the handle with my children at the drop of a hat. My reactions were crazy. I am normally generally mellow and easy-going. Then after about 4 months, I noticed I was having trouble focusing at work and was in a brain fog. It was mild at first but continued to progress to where I would fall asleep regularly at my desk. I decided for the sake of my new job (I am a widow and sole provider) that I needed to go off it for a while. After about 2 weeks, my life started returning to normal. I occasionally try to take it again, but then after a few weeks of starting it, the side effects return. I really wish more options were available to me to prevent the recurrence of breast cancer."

• Anonymous
• Taken for 5 to 10 years
• October 23, 2014

"I'm on my 6th year taking tamoxifen. I was on it for 5 years, and stopped - at that time it was thought I should only take it for 5 years. A year after being off and the new research came out that I should do it another 5 years. I've been back on now for about 6 months and I'm seriously considering stopping. Side effects are so bad that I'm having a hard time getting through life. Mood swings and bone pain are my 2 main issues. The thing is, I'm cancer free and of course want to stay that way. I think that if my doctors were more realistic (honest) about the side effects, it would be a little easier to deal with them. Reading some of the statements here is helpful actually - I feel a little less alone."

• DOLSSON
• Taken for 1 to 6 months
• January 29, 2014

"I have been on Tamoxifen for four months now & have been told I will be taking it for the standard 5 years. I have had hot flashes, no period (that stopped after my second chemo in April 2013), sex drive has disappeared (also from chemo & Tamoxifen combined) and I have had pelvic pain (tends to be more apparent when I lay on my back), joint pain (in my elbow and where legs join pelvic), and lower back pain. I am hoping that some of these side effects will soon subside. Wow, it is amazing all the different side effects that Tamoxifen causes for people. Reading a lot of these comments has made me now realize that all the pains & aches I have been having truly are side effects from the Tamoxifen. It's nice to know I'm not alone!"

• 10095
• Taken for 2 to 5 years
• March 5, 2018

"I had Breast Cancer in 2004 Ductal in situ so I was very lucky I had a breast removal then radiation and 5 years on Tamoxifen. I was 48 at the time but very fit and had already gone through an early menopause so the drug did give me symptoms although I had not suffered any when going through the menopause I had hot flushes mild night sweats mood swings and put on a lot of weight! But it was all worth it to survive and I soon got my figure back when I stopped it after 5 years. All I would say is treat these side effects as the menopause and you will find they ease. Avoid spicy, food, alcohol and wear layers of clothes so when you get hot you can slip something off. Stay very active my own weight gain happened when I slowed up my exercise also I found sage tea very good for cooling down. Please, Ladies, stick with it and stay well"

• Maria...
• February 4, 2018

"I have been on tamoxifen for nearly 5 years now , and can honestly say I have not experienced any side effects , I have opted to carry on taking this drug for another 5. years to prevent my breast cancer returning, I do have a bit of trouble sleeping but I am putting that down to going through the change . Reading the comments on here I think that I am 1 of the lucky people that it hasn’t had a horrible effect on ."

• Tamox...
• Taken for 2 to 5 years
• August 1, 2017

"This drug is nonsense. They tell you the side-effects are minimal and easy to deal with - as long as you tell your doctor. Well, it's been three years and the only thing the oncologist has recommended for me is psychotherapy (apparently because I complain too much). Now I have to have a hysterectomy because I have "unusual" growths in my uterus. I look like I'm seven months pregnant and am now having to shop in the maternity department. I'm not pregnant, BTW. Evert joint in my body aches and I sweat at least a gallon a day. I've had to buy a new mattress and pillows since I ruined them (with night sweats). To top it off, my oncologist doesn't think any of this is caused by Tamoxifen. I am tearing out the little bit of hair I have left."

• MKano
• Taken for 1 to 6 months
• January 20, 2019

"Was on tamoxifen for five hellish weeks and had every side effect except hot flashes. My body hurt, I couldn't sleep, I was angry all of the time so my oncologist wisely agreed with my decision to stop the drug. Quality of life was so bad."

• No pr...
• April 20, 2016

"I have been on Tamoxifen for three months. I was put on it because of my increased risk for developing breast cancer. I have had no side effects at all. I also feel much calmer and relaxed. Before my period I would get very emotional and moody. Since I no longer have periods, I no longer experience this. I seem to be craving candy, but probably just trying to blame my sweet tooth on something besides my lack of will power. I have also lost 8 pounds."

• Neekie
• Taken for 2 to 5 years
• August 24, 2015

"I started taking Tamoxifen in September of 2013. The side effects kicked in after about a week. My fingers completely seized up, and if I crouched down, I couldn't get up again! The joint pain was unbearable, so my oncologist decided to take me off it for 6 months. He then introduced it gradually, 10mg a day instead of 20mg. So far, so good! After 6 months of that, he put me back up to the full dose and the pain didn't return! I've been on it ever since. My periods are here and there but are quite heavy and painful when I do get them. I wish they'd just stop. Just keeping everything crossed that the cancer stays away. Good luck to all you fellow survivors and keep fighting the fight!"

• Mel
• Taken for 1 to 6 months
• December 18, 2019

"I had grade 1 breast cancer in Feb and had lumpectomy and 2 lymph nodes removed. I had good news in June that they were all clear after radiation. I'm now been on tamoxafen since July. At first there was no side effects. Then the sweats got worse, I had trouble sleeping, pain in my back and fingers. Then I had a cramp like pain in my leg. I had the all clear from GP that leg was fine. I went to Mexico in August and and my both legs were so painful that I had to limp. In the mornings that I came home and went straight to a&e where I was told I had blood clots in each lung and the right one inflamed. I'm now on blood thinner injections for 6 months and may need tablets after that, all because of tamoxafen I was told. Anyone else experienced this?"

• Anonymous
• March 19, 2014

"I'm 29, was diagnosed with breast cancer when I was 26. I have probably been on tamoxifen for a year. I have a hard time taking it regularly because of the side effects. The hot flashes are almost unbearable, my mood swings push people away, and my sex drive has decreased extensively. I am taking this medicine to prevent my cancer from returning. I have a 3-year-old boy that I live and breathe each day for, and the reason I will continue taking the medicine. But tamoxifen does make me miserable."

• Jillb...
• Taken for 1 to 2 years
• January 19, 2015

"I've been on Tamoxifen for a year now. A few joint aches but all in all not too many problems. When I started the medicine I was a Pescitarian( only at fish or seafood) I have maybe two hot flashes at night. I take my pill at 5pm daily. I too was told I need to be on it for 10 years. Considering the alternative, I don't have too many bad things to say about it. Glad to be cancer free!! Hope this keeps me that way. Turning 50 in three days!!"

• Moore
• Taken for 1 to 6 months
• September 3, 2018

"I was diagnosed for her2-positive breast cancer and October of 2017 I went through chemo as well as radiation chemo which was a horrible radiation that my body tolerated 4 months ago. I was introduced to this drug tamoxifen. I've been feeling horrible every since. I feel like I have had a stroke on my right side my brain hurts I have trouble thinking even completing daily tasks. I wake up to dizzy spells and hot flashes. Blurred vision, change in color vision, stomach pain, Headache.Hot flashes, vaginal discharge. Pain or bone pain. Loss of interest in sex Trouble with sleeping. I will not continue treatment it's not worth it."

• Silve...
• Taken for 6 months to 1 year
• May 21, 2015

"I have male breast cancer. I do find it uncomfortable to only read about ladies issues, but understandable. I have found that I feel depressed, and mood swings for sure. Upset tummy is common, so try to keep hydrated. Seem to get lethargic, tired around 3-5pm, but take my medication just before bed, 10-11pm. May consider changing this. Given the alternatives and worrying how my family would cope without me as the bread winner, makes the decision to continue to take it an easy one. I am not going to give in to it. I'm 59, and lost my brother to it aged 39. Played my first 70 min game of tennis today in 14 months, and really found it made a difference. So maybe keeping fit is one way of fighting back."

• tlcre...
• September 1, 2010

"Though this medicine may give you a chance at living longer, the mood swings are massive. I feel depressed and have no energy. I am always nauseous. Everything hurts. My sex drive is basically gone, and my periods are slight if not altogether absent. I have shrunk inside a bit, so now sex is painful. I have hot flashes that keep me awake at night and make me very unhappy during the day."

• Stg2s...
• November 15, 2016

"Just started this 10 days ago. I was so nervous because it seems everyone that posts has a negative side effect. I have none!! Maybe a warm night or 3 but that's been it. It passed 10 minutes later. I also take supplements so that could be helping too. D3, milk thistle, green tea to name a couple."

• Anonymous
• September 12, 2018

"I took Tamoxifen for 3 years. I took myself off of it because of the painful side effects. They began within 3-4 months after starting the med. The worse for me was the bone pain that would be so severe that it would wake me up during the night. Also the severe pelvic pain would be so severe at times it would literally bring me to my knees suddenly. I eventually took myself off the Tamoxifen and within a few weeks all side effects were gone. Within a few months I started to fracture bones and developed osteopenia. 5 years later I am borderline osteoporosis and the cancer never really left. Someone mentioned having pain in their jaw. Now they want me to take Tamoxifen or an aromatase inhibitor again. I am considering taking one of the above only 2-3 days a week. Has anyone done that I would appreciate it if anyone has a comment on taking less of a dosage or less frequency. Thank You"

• Guard...
• July 11, 2013

"I was on Tamoxifen for 4 1/2 years after I had my chemo. There were a lot of side effects after stopping estrogen, dry skin, loss of libido, edgy feeling. When I started taking Tamoxifen I felt much better. I didn't feel edgy as the Tamoxifen tricked my body into feeling like it had estrogen. I had hot flashes but did not feel them. My friends would tell me I must have had a hot flash because my face turned red, I highly recommend this medicine. I felt much better on it."

• Vandy...
• April 15, 2016

"I was diagnosed with DC breast cancer in November 2014. After 6 chemo treatments, a double mastectomy and 33 radiation treatments, I have been on Tamoxifen for 7 months. The hot flashes are getting better at times, and I'm taking Gapapentin for my hot flashes, the back and hip pain is horrible , I have put on 20lbs, I go to the gym 3 to 4 times a week and ride my horse 3 times a week, but all forced . I feel bad pretty much all the time. Always sick to my stomach . Working out makes me feel more sick, but I push thru it anyway. No matter what I do I can't drop weight. I'm in the process of loosing my eyelashes for the 4th time . I use to have pretty, thick hair and now it's thin. My memory is horrible. I hate this life."

• Msme
• Taken for less than 1 month
• October 11, 2019

"Hello out there, I was diagnosed this year with stage 2DC. I’ve now gone through almost an entire year of treatment chemo/radiation, which has been has been hell. Now my doctor is “strongly” recommending Tamoxifen. Before reading all these experiences, I already had my doubts. I don’t know about anyone else, but I want my life back! Living like a prisoner for another 5 years is not for me. I thank and admire all who had the courage to write about these experiences, STAY BRAVE!"

• Patsy
• Taken for 1 to 2 years
• October 30, 2018

"Had hot flashes or hot all the time, thinning hair, overwhelming fatigue, pain in the jaw, confusion and strange thinking. Thought and said things differently than I normally would have and I couldn't sleep even though I was always tired. Didn't have any energy and I always had energy before but it was a chore just to make myself move. Kept saying I'm so tired. Just found these sites and it is helping me to understand how Tamoxifen affects do many so differently. Thank God my husband and family were kind during this time. I was on Tamoxifen about 20 months when I asked the doctor to let me get off of it and since I am 80 she decided to honor my request."

• Angie...
• July 4, 2016

"Its one year im on Tamoxifen . I will manage all side effects that i have as hot flash, join pain , back pain , mood swing . My goal is to live longer and see my son's future . Im 46 year old . I try not to think about pain and side effects till im really get tired from pain . Only thing im scared is pain . The rest i will manage . Good luck to all of you ! Life is beautifull and fight for it ."