Tamoxifen for Breast Cancer & Side Effects
What is this drug?
Tamoxifen is a treatment for breast cancer in both men and women that works by blocking estrogen from stimulating breast tissue. That stimulation leads in part to roughly 2/3 of breast cancers, and so blocking it is quite important, and Tamoxifen is the most popular breast cancer medication for that reason.
We have genetic tests these days and – if your cancer is positive for estrogen receptors (ER) – Tamoxifen is quite an effective treatment. Additionally, it has important protective effects in women who are at high risk. That said, for post-menopausal women, a different class of medication called the aromatase inhibitors may be a more effective treatment for certain types of breast cancer.
One study showed that over five years of treatment with Tamoxifen, your risk of developing ER+ cancer dropped almost 70%. That said, it has almost no effect on cancers which don’t have the ER, so its final effect is to reduce your risk of breast cancer by 50%.
Quite good. Unfortunately, Tamoxifen is technically a SERM – a selective estrogen receptor modulator. While it blocks estrogen from stimulating your breast, it actually acts like estrogen in your bone and uterine areas.
That means that treatment for extended periods of time can highly increase your risk of uterine cancer. The exact numbers aren’t entirely clear, but they range from doubling the risk to quintupling it. In terms of absolute numbers, 2.3 out 1,000 women will develop uterine cancer over the course of treatment.
As such, preventative use of tamoxifen should be reserved for people at high risk. One guide describes that as having a 1% or greater chance of developing cancer over a year if you have a uterus, and .5% or greater if you don’t. Issues that put you at high risk include BRCA1 or P53 genetic mutations, or simply having had strange growth in your breast.
What are the side effects of Tamoxifen?
Hormonal: Women taking tamoxifen are at increased risk of birth defects. This is because the drug interferes with the body’s hypothalamic-pituitary system, which can interfere with the menstrual cycle. Hot flashes are a common side effect, as well as ovarian cysts.
Skeletal: On the plus side, tamoxifen has positive effects on bones. Treatment with it is associated with a slight reduction in risk for bone fractures. The effect is not as strong as typical treatments and should not be sought after for itself.
Heart: Treatment causes a slight reduction in LDL cholesterol, but does not effect HDL levels. This effect has not been shown to have any cardiovascular benefits, however.
Blood: Tamoxifen has similar blood clotting risks as typical estrogen therapy. That means that you are at a higher risk of developing a clot which lodges in your veins or lungs, causing deep venous thrombosis or a pulmonary embolism, respectively.
Eyes: Treatment is associated with a 60% increase of risk for cataracts.
since taking tamoxifen for the past 6 months, I find that my whole body aches, I think it is muscular, as I hurt all over but when I start to use the muscles the pain lessens, I have consulted my GP but he dissmisses it, it appears to be getting worse, I was wondering if anybody ese has the same trouble.
i hurt all over also. I have severe cramps in both my legs. I have been on tamoxifen for yr and 3 months
have groin pain for year and half…getting worse. Onocologist. dismissing pain as not from tamoxifen. At first thought is was a future hip replacement or cancer. But test & xrays proved wrong…thankfuly
Hi I have been taking Tamoxafin and I also ache all over and have felt sick most of the time I am now having a break from it and feel like a new person I know that I have to go back onto them The doctor has sugested that I take them at night before I go to bed.
Watch this space we will find out!
Hi
I’ve been on tamoxifen for 4 years. At night I get leg cramps so bad I could hardly stand it. I’ve found out, through a friend, that Tonic water or Selzter water helps alot. I drink just a little before bed and I don’t get the leg cramps.
Another thing that really bothers me about tamoxifen, is not being able to lose weight. I exercise at the gym an hour 3 to 4 times a week, eat 1,000 to 1,300 calories a day but lost only 6 pounds in 3 months.
What I eat is fruits and veggies and sometimes fish or turkey.
I’ll really be glad to be off of it in March of 2011.
I’ve taken Tamoxifen for about a year and I, too, have very painful cramps in my legs at night, awaking me from sleep. beginning with my foot, then ankle, then calf. The only way to stop it is to immediately stand up and put weight on the foot. It isn’t a potassium or magnesium deficiency. I’ve tried all the tricks, including the electrolyte drinks. So now I’ll try tonic or seltzer water. By the way, Femara and Aromasin were both impossible to take. Tamoxifen is “only” about half as bad. If I’m off of it for 2-3 days, I’m like a different person, and am hoping I can last for another 4 years or so.
I was on Arimidex for three months with increasing deep muscle pain and was switched to tamoxifin a year ago. After about 5 months, I began to have flu like symptoms-no energy-so tired even upon waking-my hair was all over the place- on clothes, the floor, the bed-Ithink I have lost at least 1/4 of my hair and so many of my veins have surfaced especially on my legs which burn and sting constantly. I asked my oncologist to give me a break and he agreed to take me off for 2 months.
Am about to start taking tamoxifen, have been putting it off, can’t say the comments above inspire me at all, i am still trying to find my body and its rhythms after finishing chemotherapy. Can anyone tell me how it has affected their periods and libido? I have had 6 weeks of bleeding since finishing chemo with a 5 day break. Is tamoxifen likely to make it worse or better?
I’ve been on tamoxifen for 4 months and I have never experienced such pain in my lower body. I’m 47 tears old and I can’t even walk sometimes Can any one help
I’ve had Cancer in 2009, had surgery, had chemo for 8 weeks and quit just went back to get a check up blood work is excellent, mamogramm is good see me next year, but the doctor wants me on Tamoxifen, she said everyone that has cancer must take this for 5 years, I have not taken anything no medication for a year, and I feel fabulous I trust God in this I have ask God to heal my body I believe he has and I don’t want to take it at all , she gave me a prescription is there anyone out there that can testify that there have never had to take any Tamoxifen after having breast cancer.
I’ve had Cancer in 2009, had surgery, had chemo for 8 weeks and quit just went back to get a check up blood work is excellent, mamogramm is good see me next year, but the doctor wants me on Tamoxifen, she said everyone that has cancer must take this for 5 years, I have not taken anything no medication for a year, and I feel fabulous I trust God in this I have ask God to heal my body I believe he has and I don’t want to take it at all , she gave me a prescription is there anyone out there that can testify that there have never had to take any Tamoxifen after having breast cancer.
Hello,
I’ve been on tamoxifen since November 2009 almost one year I am glad to take something that will increase my chances to be cancer free. Yes the hot flashes are there but not having a period is great. I’ve had shoulder pain since my first neulasta injection it comes and goes, my Dr. dismisses it, my weight has been up 8 to 10 lbs since chemo but I try to walk for an hour three to four times a week and i usually feel good. I do feel more tired than I’de like to and I don’t sleep well at night. To Sharon I trust God for everything but i also take my meds.
Thanks for these remarks!! My right shoulder started to hurt a number of months ago once I could start sleeping on my side after the sugeries, thought it was out (doesn’t help sleeping on the couch either). The latest is when I get up in the morning my feet ache, but once I get moving I’m okay. I’ve been thinking I have arthritist since my mom has it bad. Glad to know I’m not alone.
Here’s a PS to my previous comments about foot and leg cramps! My knee replacement surgeon sent me back to physical therapy with specific instructions to strengthen that muscle, etc. (can’t recall the name). It helped immensely. At the same time I was getting the cramps I was using the stationery bike for 1-2 miles a day. I had to quit for a while and the cramps disappeared completely. I’m wondering if my posture on the bike (placement of my feet/ankles) was contributing to the awful cramps. I’m ready to start pedaling again and I’ll see what happens. Nevertheless, I still don’t like Tamoxifen but it’s a whole lot better than Aromasin and Femara! BTW, my cancer onco said there were no indications that Tamoxifen contributed to the cramps……..ok……
Hello :) I had breast cancer 4 years ago at the age of 25. I had chemotherapy and was placed on Tamoxifen shortly after. I am nearing my 4th year of Tamoxifen treatment. I always said that Tamoxifen gave me no symptoms at all, but everything seems to have gone downhill over the past year or so. So after about 3 years of taking it, I developed ovarian cysts. Then I’ve been experiencing the same bone/joint/muscle pain that everyone has been mentioning more and more everyday. Lately I’ve been feeling like an old woman, and I’m only 29! My ankles really hurt especially when I get up in the morning, and I just have generally sorness and achiness in my arms and legs. It really worries me because I’m always wondering if I’m having a recurrence. :S But it’s definitely reassuring to know that I’m not the only one experiencing this… Good luck to you all!
First i would like to say that you are all warriors! keep up the good work! I have been on tamoxifen now going to be 5 years january 2011 my doctor appointment is on january 11, i will be going off of them my doctor said to me then. i have experienced the leg and foot cramps alot as all of you i think it is a side affect also.also it is hard to lose weight like i was normally used to doing with no problem before i started them. cant say that is related also it may be because im getting older. i am 45 now and havent had a period since i started them. i do have my share of aches and pains as well as you all! i will comment in a few months and let you know if anything has changed for me. HOPE TO ALL YOU WARRIORS!
I just started taking Tamoxifen and I feel tired and achy all over . I’m not sure if I want to take this for 5 years . I’m 45 and have a 14 , 15 and 5 year old to take care of I feel like an old lady .
Jill, Its been a year and I decided to not take it and just simply trust God and I have made the best decision, I eat much greens, broccoli, fruits, no fried foods, no soda, just plenty of water and juice and I am 49 years olds doing great TO GOD BE THE GLORY, Taxoxifen is nothing but chemo in a pill I want to live I read my bible and talk to GOD everyday. Get in a church hook up with someones that truely LOVES GOD, no drinking no smoking keep you body pure and excerise everyday I do 15 mins if it nothing but walking. in three weeks you will be emailing me back. oh vitamin D also once a day. Happy New Year!
Sharon…..I totally understand your decision. Tamoxifen not only “messes with my body”, it also “messes with my head”. Chemo was bad enough, and this is just more of the same. I refused Femara and Aromasin because they were absolutely intolerable. I am now off Tamoxifen for 10 days because I have knee replacement surgery coming up next week, plus 14 days after surgery (blood clot issue with Tamoxifen–does this sound like a good thing???). I already feel so much better. Agree–Vitamin D is important! I take 2000 units a day. I, too, am a believer, and I wish you God’s richest blessings, and we’ll praise Him together. Hugs….
All’s I can say is Thank you Jesus. Everybodys Cancer is not the same, (THE BODIES ARE DIFFERENT) what it takes for some does not mean it is for all. I will never understand it, That why I totally depend on God, and it a good thing to know that there is someone out there that is a believer Praise God!
I have been taking Tamoxifen for about 1 month and can’t sleep at night! Anyone know of anything to help?
Hi everyone, i watch and read but rarely reply. I started Tamoxifen in July and stuck with it for 2 months, with soda water and at night – based on helpful feedback form this site. I still noticed the aching muscles and creaky joints. I stopped during my radiation treatment due to getting a chest infection and taking antibiotocs. Sometimes enough is enough for your body. I haven’t been able to bring myself to go back on it. I’m 37 and have a 4 year old. I had low grade breast cancer but despite what seemed low risk, i had the full course of treatment, mastectomy, 6 cycles of AC chemo and radiation. My body is trying to put itself back together and yoga has been a huge help. I intuitively feel that Tamoxifen is likely to interfere with a body that will find its way back to balance and genuine health if left alone, with good exercise, food and finding ways to live calmly and help others. Hugs and encouragement to those of you who have opted off this and are willing to trust God and themselves. We all die someday, i want to love living my life and not fear what is inevitable.
I have been on tamoxifen for 7 months i ache all over, tired all the time, mood changes and hot sweats. Sometimes i feel like crying. I am a young 51 year old i feel like an 80 year old. I also get leg cramps always at night and very painful; I keep wondering if i could come off it and what the risks would be if i do. But i can honestly say it is like a living hell.
Dear Sandra
So sorry to hear of your discomfort, ask your Dr. about vitamins I take a 50+ formula lots of water and since its cold outside i use a mini trampoline (bounce up and down and jog on it) when the aches get to me (usually i don’t feel like it) but it helps with energy and the aches like i said earlier its been over 1 year for me on tamoxifen have many symptoms, but its better than breast cancer hope this gives you a little encouragement sometimes you have to fight and not give up. Will be praying for you
Wow! I have been taking Tamoxifen for only a month…the comments I have read are a bit disconcerning. I have noticed that I am more tired and achy, although it is winter in Iowa. I am hopeful that I will be able to tolerate this med for the next 4 years and 11 months. Peace to you all.
I found that taking evening primrose oil pills helps decrease the hot flashes so I can get more sleep at night
I am suppose to be taking Tamoxofin since August 2010 but I rarely take it and stopped seeing my Oncologist too. All I do is cry all the time and my relationship with boyfriend of 5 years is not the same anymore. My feelinngs get hurt extremely easy and I can’t control it. I won’t leave my home for sometimes 3 days because of anxiety. Sounds crazy but I am scared of people kind of . but there are times that I feel great and want to go every where and do everything.After I cry sometimes I laugh like a nut . I did chemo radiation and had double masectomy and I just quit my recontructive surgery and still have expanders in and my reconstructive surgery was in oct 2009. I am very happy to be alive but it sure does not seem like it sometimes. I am tired and very self concious now. I just want to be normal again . I really don’t talk about my feelings to anyone because when I try I just cry like baby. So I am going to tell whoever reading this my mess. I cried entire time I wrote this and feel fine now.But I will be in tears again before day is over. But now I am going to finish dinner and lay down and sleep. I try staying strong and keep head up but its very hard. I have so much going on in my head and know I need some help and support.
Sweetheart, you do need some help and support. Your feelings and experiences are a little more extreme than mine, but I hear ya just the same. I keep saying (as I try to laugh), “I just want my estrogen back!” Just suggesting….what about going to your primary care dr. (or whomever) and seeing if you’re ok in other areas–like anemia, or low blood sugar, or low thyroid levels. Can you find another oncologist who will listen to you? You may have stopped going to him/her, but it also sounds like the oncologist hasn’t followed up with you in any significant way. Wishing you peace.
For Karen,
I’m writing to you from NZ and wish I could hug you or bring you something more than just words. I can hear all the mixed up sadness and hurt. God knows I’ve written email in tears myself, and then afterwards feel better. Its Ok to be how you are, even if you hate it some days. Its OK to be real. All I can say is be gentle on yourself, accept where you are ( up or down) it will change and change and change. By the way, I stuck with tamoxifen for 2 months, hated it and stopped. I have been stopped for 3 months now and feel so much better. Like my old self before all this happened. I had surgery (twice) mastectomy, chemo and radiation too. I’m over treatment, I was meant to take 4 yrs of tamoxifen and simply can’t face going into menopuase at 37. I want to back myself to heal in peace. I’ve explained to my Drs at the hospital and they actually support me in that decision. Sometimes validation is the best treatment, don’t be afraid to do what feels right for you, but keep people informed so they can help you in that. Wishing you care and love and peace too,
N
I’ve been taking Tamoxifen since June 2010 after surgery to remove small tumour in breast followed 2 weeks later by surgery for DCIS and course radiotherapy. I get cramps in my feet also and other side effects I have recently thought I would be better not taking Tamoxifen, each time I put one in my mouth I say a prayer, I have not taken it for the past 2 days, thinking of weaning off gradually and trust to God for healing
I started taking Tamoxifen in April 2010 after nreast cancer so Im approaching the end of my first year. I find my hips ache a lot when Im lying down so I spend half the night shuffling from one side to the other. I am recently experiencing numbness in my little toe which is strange and I tire quite easily. But on the plus side I do feel Im getting stronger as times goes on. I must say also that Im always bowled over by the bravery of cancer patients.
Hi, everyone.
I just found this site and I’m so glad. No, I mean I hate reading about how Tamoxifen is affecting people, but I’m so glad to hear the feedback. I was beginning to think I was crazy.
I had estrogen positive breast cancer, lumpectomy in November 2009. I had absolutely no issues with chemo beyond the obvious (bald is beautiful, baby) and some occasional fatigue. My oncologist started me on Tamoxifen a month ago.
I was dealing okay with the hot flashes, but last Saturday I experienced a sudden bout of fatigue (while on my horse) so severe I almost fell off. it’s been the same every day. I’m a physically active 51 year old and I can barely drag myself out of bed.
I’m also on Zoloft for depression and Synthroid for a non-active thyroid. And I take cholesterol meds, too.
I don’t know if my problem is with the Tamoxifen or the drug cocktail. I just know I’ve never felt more miserable in my life.
Any advise?
Talk to your oncologist DR. some people have more severe fatigue than others when it interferer with daily living then maybe you need to be switched to something else
Thanks, Jill!
I will be talking to my primary care and my oncologist tomorrow. I’ve stopped taking the drug for now. My last dosage was Friday morning – the fatigue levels have not improved and now my hands are shaking almost constantly.
Grrrr. I’ll get through this! Thanks for your feedback!
Good luck, Chris! I have the same issue with the Tamoxifen. My primary doc does not believe that my fatigue is caused by the Tamoxifen, but it didn’t start until I started with the Tamoxifen. I hope it gets better for you!!
Hi, Dillard!
If your PCQ (Primary Care Quack) is blowing you off, find a second opinion. And a third, if necessary! So he/she doesn’t think the Tamoxifen is causing your fatigue? Then what IS causing it!? Occasionally the members of the medical/industrial society have to be reminded that they’re supposed to treat the patient – not just the disease.
If it’s one thing I’ve learned through this process, it’s QUESTION AUTHORITY every step of the doG-blessed way.
And I hope it gets better for you, too. My hands are still shaking, but I was able to make to 11:00 (CDST) before I had to lay down! Good luck to all of us!
I don’t know if it is because of 4 major surgeries in 3.5 years plus chemo and radiation, and the anesthetic is just catching up with me…..or it’s Tamoxifen. My hair, especially in the front, is thinning and has become fine like baby hair. It has lost all body and what small amount of curl and wave I had. The rest mostly feels dry and like straw. My thyroid level is fine. I’m going to grow out my hair and see what color it really is (no more hair dye), and try to determine what’s going on. Just bought a wig to wear when my gray roots pop out! Has anybody else had a similar hair thinning/damage problem with Tamoxifen?
Hey Chris! Thanx for the encouragement. My primary doc is great; no issues there. She ran blood levels and I am low on iron and folic acid, am hoping that helps. I also have epilepsy and take seizure meds, but the fatigue really kicked in with the tamoxifen. I am blessed to have a great medical team. I hope the shaking stops for you and you are able to get back on your horse.
Hi, Dillard!
I’m glad to hear that you have a good relationship with your primary care. I like mine very much, but at times question his competence, so I stay on his rear end!
Shaking or not, I get on my pony! If I have to be tied onto him, so be it!
Take care!
Chris
I tryed not to comment on this, I spoke once before. All of our bodies are different, when my doctor told me I had to take it, I did a research on it. Its another form of Chemo. Believe it or not Chemo is the killer, I had eight weeks and that was enough for me. I do all I can to watch what I put in my mouth. I get my rest, and I excercise three to four times a week. salt is bad, sugar is bad, coffee is bad soda is bad beef is bad do the search and find out whats good for your body. When I set in the room and seen all the people getting chemo at 4,500.00 a treatment, I knew then that something was not right didnt make since to my common sense. Everybody body is different we all don’t need what they are putting in our body. Last but not least TRUST GOD CONCERNING YOU I ASKED GOD TO HEAL ME OR KILL ME, I KNEW I COULD NOT KEEP DOING THIS, AND I STAND HERE TODAY TO SAY HE HAS DONE JUST THAT. I PRAISE AND WORSHIP HIM EVERYDAY, EXCELLENT DOCTOR REPORT I HAD TWO MONTHS AGO. THERE IS A GOD THAT IS JUST WAITING FOR YOU TO TALK TO AND LIVE FOR HIM AND BE A WITNESS FOR HIM . GOD BLESS YOU AND HAVE A GOD DAY!!!!!!!!!!!!!!!!!!!!!!!!!!
Thank you, Sharon. You’ve given me food for thought. I am 2+ years post-chemo (4 treatments) and I think it’s the Tamoxifen that’s causing so many side effects. We prayed for complete healing at the very beginning and, according to all the tests, that’s what’s happened. So is Tamoxifen my source, or is God my Source? I am “myself”, both mentally and physically, when I’m off Tamoxifen (due to knee surgery — it can cause blood clots), so I’m thinking this is a no-brainer. Here’s a good one: I asked my oncologist some questions before my first chemo, and one was: “How do we measure the effectiveness of chemo? Am I getting too much? Too little? Is it working properly? How do we know?” Her answer: “We don’t.” I kid you not. Minutes before the 4th chemo, she said, “Did we say 4 or 6 chemos?” (Didn’t she know?) Somehow I was ready for that question because the insurance was paying 100%. I smiled and said, “This is #4, and I’m done.” No more discussion. Fortunately, I have a new onco. Sharon, bless you. I am going to pray as you have. I need some answers.
God bless you I will be praying for you, JESUS IS OUR ANSWER, TRUST HIM FOR GUIDANCE. I do everyday, everyday. everyday……………..
Hi guys!
I’m pretty sure my standing with the Almighty is pretty shaky, but I’ll pray for all of us too!
Thank you, Chris, we all need it!!
thank You everyone, I feel so much better knowing that others feel like me. I have been on and off tamoxifen for 2 and a half years. I had mastectomy, chemotherapy and herceptin and now tamoxifen. The chemo damaged the nerves in my wrists but when i have the tamoxifen it makes my whole body ache and i feel like i have the flu. I am so glad others feel the same
Thank you everyone for your courage and comments. I too needed to know I wasn’t alone. This is very hard and I’m not sure I want to continue taking this drug. I have been on Tamoxifen for 15 months. First I experienced the leg cramps which were extreme and in odd places like the top of my foot, ankle, calf or in the side of my knee. Most times I just had to endure them until they stopped with no way of getting relief. Very painful! Other things I am living with are the terrible hot flashes to the point I just can’t think straight, fatigue, weight gain without being able to lose and forgetfulness that’s really interfering with my life. I’m scared to go off Tamoxifen but I think it’s becoming a quality of life issue. My risk is very low and my dr is on board if my life is too much of a struggle. I’m just not sure what to do. I have had a lot of things happen in the last 18 months. My husband very cruelly blindsided and left me, I was diagnosed with breast cancer, had a double mastectomy with very painful reconstruction, I lost my job of 20 years and my dear precious grandmother passed away. Sometimes it’s hard to just keep going. I just need to be myself again so I can begin to get my life back together.
Sandy, get your dr. to send you to a physical therapist. Be sure the therapist knows exactly what you’re talking about. I went from 4-5 horrible cramps per night (and no sleep) to maybe once or twice a week–same exact description as yours–just minor now. At first I believed my dr’s office that they “had no knowledge” that there was a connection between Tamoxifen and cramps–like they have had no knowledge of other things. I hear ya about the weight gain and the fuzzy brain and fatigue. Try going to a fitness place, preferably where you can have the services of a trainer for at least a while. I’ve only gone twice now in less than a week, and already I feel SO much better. I sweat like crazy while I’m there, the trainer pushes me just a bit until I say I’ve had enough, but I have become so much more energized. I’m even now hopeful about weight loss.
Another thing for fuzzy brain–do you like crossword puzzles or Sudoko puzzles? That really helps. I began Sudoko on the easiest level, and now I can do the hardest ones. So sorry about your hubby. I understand “blindsided” too. But look at it this way…..the view at the fitness center can be quite nice at times, if you get my drift. Ya never know! You’ll be on my prayer list so you can make whatever decisions are necessary.
I have been taking Tamoxifen for almost 5 years with side effects similar to those mentioned above. The most annoying are the hot flashes every 30 minutes and leg cramps every night. I have learned to flex my foot at the beginning of a leg cramp and keep it flexed until the cramp goes away. Six months ago I experienced a kidney stone that I believe was caused by an over-abundance of calcium in my blood (hypercalcemia) that was caused by the Tamoxifen. I don’t want to take any of the aromatase inhibitors. I don’t believe I should stop production of what remaining estrogen I do have (I had a complete hysterectomy 3 yeas ago). Has anyone been on Tamoxifen longer than 5 years? My oncologist has offered to let me stay on it instead of switching to an AI. I can also decide to go off all medication. I can handle the side effects so far, does anything change if you stay on the Tamoxifen for longer than 5 years?
the studies show that there was no increased benefit if taken longer than 5 years , look up some reputable sites and read the studies , it’s not recommended to take longer than 5 years . Talk to your Oncologist about the studies
I am closing in on 4 years of Tamoxifin. I have what I believe is bone pain in my thigh bones just about every night before I go to bed. My biggest complaint right now is these flu like body aches that I get once a day, usually towards the evening. Ibuprofen and tylenol really don’t touch the aches. I have Vicoden for hip pain that does help, but really don’t want to keep needind it. Anyone else have these body aches? Any advice??