139 Comments
March 26, 2023
Elizabeth Iskander M.D. says:
At 70y/o got 1 cm lobular ca. Mom died of same ca after 5 years in 1975. I joined FROST (Freezing without Resection of Small Tumers) study. My Cancer was frozen in office procedure & went home. Easy. No node biopsy, chemo, radiation. I’m in Glendale CA. There are FROST trials in many USA states. Tried Arimidex but joint pain and mental fog. Started Tamoxifen 20mg. Uterus became painful & endometrial lining kept growing to 16mm. Had D & C. No cancer. Later I cut it to 10mg, then 5 and now 2.5 mg. Feeling better.
Read about freezing breast cancer. Having that dead tissue remain in your breast acts like an immunization. In animal studies it occasionally reversed advanced cancers.
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April 27, 2023
Maddie says:
Hi All:
I am so happy I found this site as I am really concerned about starting this tamoxifen. I literally have the prescription to pick up and I just don’t think I can do it! I was diagnosed in Nov/22 and had DCIS ER/PR +. I’m 61 and post menopausal ( surgical) It was a large area and somewhat spread out. Had a lumpectomy with oncoplasty reduction surgery. Margins were clear and 5+. I had 20 sessions of radiation as a test I had done showed I had a high possible rate of recurrence. That was the DecisonRT test. Lastly is tamoxifen and I just gave this gnawing feeling not to take it, but my breast surgeon said, I would just hate for you to have a recurrence somewhere down the road and say to yourself, I wish I would’ve tried the tamoxifen. And now I can’t get that out of my head. But I have a gut feeling that just says DON’T DO IT!!
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July 19, 2023
Ashli Presley says:
Hi! I want to share my experience with Tamoxifen. First I must say that my mother was on Tamoxifen for 10 years and she never had a reoccurrence of her breast cancer. I wasn’t concerned about starting Tamoxifen b/c I witnessed how well my mother did on it. I was thrown for a loop when I experienced loss of energy and severe depression with a side of anxiety. It’s unclear if this was really due to the Tamoxifen or if I was having a late reaction to the stress of a cancer diagnosis and a double mastectomy. I was advised to stop the tamoxifen while I loaded on an antidepressant and also started taking a very low dose anxiety medication daily. After about 6 weeks I started Tamoxifen back and it has been going pretty good for 3.5 years. The hot flashes are annoying but have gotten much less frequent and I assume that is something I would have to go through as a woman anyway. I’m so grateful I had doctors that listened to me and took action! I get a lot of comfort knowing that I’m doing something everyday to prevent cancer from returning.
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July 1, 2023
Peggy says:
Just stopped taking Tamoxifen after 4 1/2 years of the 3 drugs available. First two caused joint pain, Tamoxifen had many side effects. I was tested to see if 5 more years of it would affect my chances of recurrence, and that came back negative. Therefore, I stopped taking it about a month ago. The hot flashes are still really bad, but might take a while to disappear. However, I would recommend you try it for a month or so. You may be one of the people without side effects!
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July 7, 2023
Casie Helms says:
Hey Peggy, I was diagnosed with the same thing as you. DCIS and I had a medium sized tumor about the size of a grape. I was also E & P+. I was 34 when I was diagnosed and first had a lumpectomy. Margins were 80% filled with DCIS so they took both breast in radical double mastectomy. No Chemo or radiation. I have been on Tamoxifen now for 9 years. I still have 2 to go since I was so young when I was diagnosed, I have to be on it for a little longer than usual. I have not done great on the Tamoxifen, but I was told that I needed to continue since I was high risk. It does cause a slew of side effects, I feel nauseated constantly, I have pains all in my legs and the abdominal cramping and headaches are with me every day. I also am extremely sensitive in the sun and will burn very easy and also pass out from heat exhaustion. I really want to stop taking it, but I am scared that the cancer will come back so I don't. I don't want to tell you not to take it because it may save your life, but I will tell you that it is not fun being on this drug. Some days I just feel like I can't deal with it. Hope this helps. Feel free to email me if you have any questions.
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September 20, 2023
Carmen says:
Hi I had dcis no chemo and I did do radiation. I'm currently taking tamoxifen for 5 yrs. The pain is horrible in my legs. Amy advise on what I can do to help the pain?
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July 12, 2023
Sandy B says:
Hi I’m Sandy. I was diagnosed with atypical ductal hyperplasia in 2021 at 29 years old. I was told I had a 44 percent increased risk of this turning into breast cancer. Have been taking tamoxifen for the past year and a couple of months ago I did stop taking it for about a week. The side effects have been very taxing on my body, very difficult for me to work, get things done around my house and take care of my family (4 kids). I do have the help of my husband, but I don’t think he truly understands the depths of the side effects of this medication. In addition to these side effects, my oncologist had not scheduled me a follow up appointment to do bloodwork so I don’t know how long my blood counts have been abnormal for. So, since May of this year I started doing labs to check my blood levels and we have done them two additional times to see if they were improving. My white blood counts has been lower each time. From 3.95 in May to 2.18 now. So PET scan has been ordered to check for any possible lesions, I have been told that they don’t expect to find anything but just being cautious. I have been feeling like a healthy diet, exercise daily, self care and limited stress might be the best alternative to this medication.. I have tried all of this in combination with the medication and it does not work because I never feel rested and I cannot focus, foggy brain all the time. This has definitely been a trying time. So after the scans I’m considering getting off of this and maybe trying holistic path.
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August 21, 2023
Stacie says:
Try taking the tamoxifen at night I started sleeping way better you got this!!
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June 30, 2023
Michelle says:
I’m 42 and been taking Tamoxifen for a year. I too was scared to take it initially however I think it’s definitely worth giving it a try as you won’t know how it affects you until you try it. If the side effects are too problematic you can stop it again. I’m struggling with exhaustion and fatigue most days and speaking to my oncologist today I’m going to try a 6 week break to see if things improve and then go from there. I do have some brain fog and other menopausal symptoms such as mild vaginal dryness (there are creams that help so that’s not a problem) some hot sweats at the beginning but nothing too drastic! Good luck in whatever you decide ladies ❤️
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June 27, 2023
Michele says:
I am in the same boat! I have had the tamoxifen for over 2 weeks and I’m scared to take it. Idk what to do.
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July 11, 2023
Laura says:
I took tamoxifen for 10 years I stopped taking it two days ago what will happen will I have side effects from not taking it
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August 11, 2023
Lynn fortune says:
This is hard to read. So many women trying to figure out the best options. Especially because one size does not fit all. And the studies and science are constantly changing. I read as much info about my stage 2 lobular cancer as I felt warranted. I had a mastectomy, chemo, radiation and reconstructive surgery. I took Arimidex, brand name for 10 yrs based on the info I read. The first 3 to 5 months I had some brain fog. But I was use to it as a working Mom. I eventually didn't notice any side effects. My personal opinion is try and hang in there. I think it can be a benefit from keeping the cancer at bay. It's been 13 yrs and I am 69 yrs old. Best wishes to all who have to deal with this disease. I did not feel any difference when I stopped taking the drug.
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June 27, 2023
Michele says:
Hi Madi I’m in the exact situation that you are. I’m confused and scared and don’t know what to do.
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June 30, 2023
Michelle says:
Hey gang! I'm so glad i found this! I had double mastectomies and chemo for a DCIS that escaped the duct (dense breasts didn't show cancer at my annual for YEARS). Anyway, my oncotype was 29 so they put me on Arimidex. NO. Joint pain, muscle spasms, severe depression (I've never been depressed, I go more towards worried anxious crazy lady), and mental/dementia-like fog. I stopped and refused to get on anything else for 6 months. My gut tells me to treat it naturally b/c that's who I am. Then doc convinced me to try Tamoxifen. It sat on my counter for weeks then I tried it. 2 days in, I had horrible headaches and insomnia. Btw I'm already in menopause b/c of chemo at 45 so the hot flashes were already there. Anywhoo, after doing my research, I read that 5mg works the same as 20 for DCIS patients. I know mine was invasive but who care it's either 5mg or nothing. So far, the 5mg is much better. Still some sleep stuff and frequent urination, but SO much better. How is there not a better way to prevent by now? This stuff is so toxic!! Love to all of you and man what a journey.
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August 22, 2023
Mellany says:
Hi , I feel so sorry for all of us going through this , I wa diagnosed with Stage ) Non invasive DCIS , But after fir Lumpectomy , I had positive Margin and I became stage 1 invasive DCIS , Had a second surgery , Nod Biopsy , All came negative , 20 sessions of Radiation , Now I have to start Tamoxifen and I am scared , I cant stop thinking about all the serious side effects that come with it , I am 49 years and my doctor told me that I need to take it maybe a bit more that 10 years , I know by heart this is wrong , With Tamoxifen you prevent one disease , Then you invite other cancers and diseases to your body , I do want to have quality life , I just dont want to be alive . So I decided to cut my 20mg to 10 to see how that goes , If I have to I will take that 10 mg very the day to make sure that I won't be taking more than 5mg , I have been reading and studying for a long time regarding Tamoxifen , And there is not much difference between 5m and 20mg , But since The protocol approves 20mg , All doctors stick to it .
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June 3, 2023
Barbara says:
Have you considered tamoxifen 5mg everyday or 10mg every other day.(babytam). The side effects are very minimal if at all and is shown to be just as effective in DCIS patients. https://www.oncnursingnews.com/view/low-dose-tamoxifen-shows-continued-efficacy-in-adjuvant-setting-at-10-year-follow-up
Ask your doctor if this is an option. Wishing you all the best.
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June 10, 2023
teressa says:
Im almost to 10 years of Tamoxifen!! Its doable .. Im not sure what I will be like off of it.. I cant tell what side effects are from Tamox or getting older.. lol
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July 2, 2023
Julie says:
Did you find that tamoxifen made your skin age at accelerated rate?
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May 13, 2023
AMYWORKMAN says:
Im 52 i was 51 when they found a dinkey breast lump they took it out and did radiation i cant ake tmoxafin i got hit by a car 22 years ago and i have a hard time walking any way but it mad my legs ceze up on me i have a home that has stairs i cant go with out walking up stairs so im not taki im going to ask my doctor for some thing else my pup has to be taken care of to
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June 17, 2023
DONNA JONES says:
My legs seized up too. It was extremely painful. I had to take Pregabalin, Tegretol, and Baclofen the whole time. It worked once we figured out the dosage that worked best for me.
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April 2, 2023
Sally says:
I've been on tamoxifen for nearly six years now. Diagnosed in 2017 at 57. Lots of side effects, fatigue, night sweats, hot flashes, the works, emotions all over the place. Managed two years pretty consistently, then menopause so they tried me on AI's which were way worse. Compliance has been hard and I've taken lots of breaks without telling the doctors sometimes. Then wanted to get back a year ago and the doctor approved 5mg at four years in, no side effects, lots of trials at lower doses. I've just upped to 10mg to see how I tolerate that as that is a more effective dose. Anyone who's thinking just stopping, try a lower dose and tell your doctors or don't if they disapprove but I'm going to bet they will reduce the standard dose to 10mg in a few years time. They need to do better on helping with compliance, this stuff is hard but taking something is better than nothing if you can do it.
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May 1, 2023
Maddie says:
Sally:
you are so right!! i just read about a completed study in the Journal of Clinical Oncology about taking 5 mg of tamoxifen.. they call it Baby Tam. Click on ascopubs.org and enter "low dose tamoxifen study". I found this thru a Dr. Eleonora Teplinsky on Tik Tok. Very interesting and I will be talking to my oncologist. She wanted to initially start me on 20 mg. I just keep staring at the bottle. Needless to say this is what got me researching. We have to be our own health advocates I guess and I"m ok with that...just want to do the best that I can. I always say, two steps forward, one step back, always a step ahead. All the best to all!
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May 23, 2023
sally says:
There are a bunch of studies from Italy on low dose tamoxifen for women with in situ ductal and the results were equal to 20mg, they were taking 5mg. Northwestern just started a large trial for 10mg for invasive BC, I can't go on it because I've already been on it for many years. I don't love it but I can tolerate 10mg, huge difference, and if I couldn't tolerate 10mg then I would try 5mg given the results of these new studies. It's all better than staring at the bottle which I have also done :)
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June 3, 2023
Jessica says:
I too was prescribed a low dose of tamoxifen-starting at 5mg as preventative, and cant stop staring at the bottle. I had my surgery to remove LCIS on April 26th and am really concerned about taking something that cause me to become more anxious or depressed. I know I need to take it though. All very confusing!
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May 12, 2023
Kathy says:
Hi all, so nice to find this group! I was diagnosed with er/pr + her2-, stage 1A, grade 2, in May of 2019. I had a bilateral mastectomy and 32 days of radiation. I tried two of the aromatase inhibitors but could not tolerate either of them, so stopped. In April of 2022, I had a local recurrence in the same breast. Stage 2, grade 3 with Lymphovascular invasion. I had a lumpectomy without clear margins, 4 months of AC/T chemo, then 30 more rounds of radiation. I tried the 3rd aromatase inhibitor for 3 months, but I could not tolerate it due to brain fog, fatigue, and severe joint pain. Then 3 weeks ago, I started 10mg of Tamoxifen. Although my doc gave me 20 mg pills, I cut them in half. I stopped it 3 days ago due to nausea, severe brain fog, weight gain, fatigue, severe hot flashes... I now don't know what to do. My oncologist told me these are my only drugs for defense. I have decided to get the Signatera breast cancer test, which will tell me if my tumor's DNA is still circulating in my body. If so, I'll probably go back on one of those nasty drugs.
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August 11, 2023
Anne says:
HI Everyone!! Anyone who had trouble with a fibroid during Tamoxifen treatment and what did u do?????????
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August 21, 2023
Cat says:
Yes! I had a large and growing fibroid after 4 years on tamoxifen. Ended up having a full hysterectomy at 46, brought on menopause but actually symptoms were no worse than being on the tamoxifen anyways. Didn't last long and now feel fine, pleased not to have a fibroid that swelled my uterus to the size of a 5 month pregnancy!!
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August 4, 2023
Tami S. says:
I’m so thankful to have found this site! I’m 60 yrs. I am 8 mos. Post opt.from my big surgery. Here is my story, hoping that someone can relate and give me their feedback
I had Stage 1-A, invasive ductal carcinoma, grade 2, 1.5 cm. 0 lymph nodes
Estrogen driven, 0 family history, 0 BRACA, 0 HER, 0 Genetic markers, ONCO score 11.
I had 16 yr old implants so my course of action after much thought and consultation with a specialized plastic surgeon, was to kill to birds with 1 stone ( so to speak) after learning that if I just did lumpectomy and radiation, 1. I, might not be able to tolerate the 6 weeks of radiation, 2. The existing implant might not tolerate the radiation and I would end up needing the big surgery anyway. And cancer is sneaky.
I had Double Mastectomy's with tissue, nipple sparing reconstructive surgery all at the same time , 7 hour surgery on Nov 7th 2022, , I was back to work at 6 weeks. I’m in good physical shape and thin my nature.
I had a full hysterectomy 2017, non-cancer related.
Oncologist recommended Tamoxifen 20mg. And I started taking Jan 2023. From there it’s been downhill, I never knew what hot flashes and night sweats were, OMG! And the list has grown from there, everything that’s listed in the above thread. The body aches, and fatigue, brain fog, legs cramps, loss of appetite, sweats & chills And then to combat those symptoms, Dr.;Puts me on blood pressure medicine & anxiety medicine for sleeping . Then lowered my dosage to 10mg. In June, fast forward. Same issues and now I’m struggling with keeping weight on. So I have as on 3 days ago, cut my 10 mg. In 1/2 , now taking 5mg. And I can tell a difference as of today, my aches are not nearly as bad, and I did not have any daytime flashes yesterday or today. I see my oncologist in 2 weeks.
I’m on Tamoxifen as a preventative measure, but honestly thinking about stopping. Quality of life is important, and I work and it’s interfering with my ability to function.
I’m going to step out on faith ( I’m a religious person) and get back to living.
So after all of this, has anyone else decided to stop with my similar experience.
To everyone on this thread, God Bless you, we are survivors!!
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February 10, 2023
Amy says:
I was prescribed Tamoxifen for BC risk reduction last November. At first no side effects apart from a big hot flash on Day 1. Then the SEs seemed to rotate around: a few bouts of mood issues in December; forgetfulness; a week of hellacious anxiety in January, followed by weeks of depressed mood; lots of hot flashes in January. I had slightly elevated blood pressure in January (above my lifelong low/normal BP), but this month, my blood pressure has shot up to 155/80! I'd been feeling crappy, not sleeping well, and having foot swelling, but didn't even think to check my blood pressure. And it was my dental hygienist that found the high BP--the doctor prescribing Tamoxifen never mentioned anything about monitoring that. So I'm frustrated that in order to *maybe* not get BC by taking T, I'd have to give up a thus-far reliably healthy part of my system. Which at age 47 I am not willing to do.
Fortunately, my oncologist is willing to try me on a reduced dose of 10mg. Hopefully that will work out.
But it really does feel like the doctors are just dropping us into the ocean and seeing if we can swim or not.
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July 12, 2023
Alyce Williams says:
I was diagnosed in 2019 stage 0 yep 0. Had a left mastectomy due not be able to get my margins clear. I have been on tamoxifen for 3 years. Over the past couple of months I have noticed my feet swelling, weight gain and my blood pressure has been very high. Checked it yesterday afternoon and it was 149/100. I have made the decision to stop taking it as of today. I just stopped having periods over the last six months but my blood pressure is to high to continue doing this. My regular BP is 117/76 or so. I’m active work out 6 days a week and eat healthy. I just don’t want to have to take something for my blood pressure and tamoxifen as well. My doctor never told me to watch my blood pressure it for swelling either.
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May 30, 2023
Michele says:
Hey everyone. Good to read everyone's messages. It's so comforting to relate to everyone.
Yesterday my oncologist finally agreed that I could stop taking Tamoxifen. I have somehow managed 4 years and 4 months. Can't believe it to be honest as it's been awful. I hated it so much. But I lost a dear friend to cancer (not breast) during those years. She lost her life in 9 short months at age 42. And it motivated me to keep going. But honestly ladies, the aches, the brain fog, the sleepless nights, hot sweats...it was terrible. Now at 50 with kids still in the house and a crazy busy career, I honestly am at my wits end. And no libido either. I want to say poor husband, but poor ME too. lol. Anyway I can't wait to see it leave my system but I have to say I am really worried that I will never feel like my old self again. I have got everything crossed for everyone else that on this board and suffering too. Look after yourselves.
Oh and PS. I also felt that I was just told to sux it up. :(
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June 23, 2023
Victoria Leonardo says:
I was diagnosed with insitu breast cancer in 2019. Recommended lumpectomy, 21 treatments of radiation, & 20mg. of tamoxifen daily…That tamoxifen was horrible for me…Ok, hot flashes, yeah. Brain fog, yeah…. But the weirdest body pains I’ve ever experienced…You know the feeling of walking up a flight of stairs made of metal, & then bumping your shin on one of those stairs??? Well I had that sensation ALL of the time 24/7!!! Up & down both legs!!! Then swelling of my left leg with pain envolved there too!!! 3 months ago I asked my Dr. if I might be removed from this medication…He was a bit dismayed, saying that unfortunately there is a 50 to 70% chance of cancer returning…I’m hoping not…This cure for me was worse than the disease…
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September 10, 2023
Julianne says:
Hello! DCIS/Atypical ductal hyperplasia/hormone receptive 0 stage right breast. Had lumpectomy in January 2023 followed by 25 rounds of radiation. Taking 20 mg of Tamoxifen nightly and I’m MISERABLE! Brain fog, fatigue, sweating to the point I have to take a shower midday, nausea, I could go on and on…I want to stop taking the meds. I feel like daily quality of life (which I don’t have right now) is more important than the small percentage of recurrence. Am I stupid? No idea what to do. My oncologist basically told me I have no choice and suck it up. Help!
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September 19, 2023
Manja says:
I was taking Tamoxifen before going to sleep and was miserable until I change the taming. I take it at 8:30am every day and I feel much better. It is tolerable now.
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June 17, 2023
Cammie N says:
Hi all! I was so happy to find this article and the comments. I was diagnosed last August with invasive DCIS er/pr+. I had multiple tumors. Lumpectomy and reconstruction. I had clear margins and also clear lymph nodes. I did 20 rounds of radiation. Also should be noted I was doing topical hormone creams for about 3 years prior to being diagnosed. I am no longer doing them. Overall feel very lucky with my outcome. I also was told to take tamoxifen for 5 years. I started it and felt awful very quickly. My Dr. said to give it 3 months and that symptoms would get better. They did get slightly better but overall I had the same complaints as most, body aches, mentally not myself almost depressed and foggy, hair loss etc. I dropped my dose to 10mg and felt guilty doing so but I felt slightly better. I then went to see my oncologist and told him how I felt and that I was not going to do this for 5 years. I asked him about Raloxifene (in then same family of meds as Tamoxifen) because my OB had told me some of her patients switched to this. He said he would rather have me on Raloxifene (at the full dose) instead of 10mg of Tamoxifen. I have been on this for 2 weeks now and I do feel more like myself. I know this is not the standard drug used for breast cancer but if it works and I am feeling better, its worth it. Curious if anyone else has tried this. I am also signing up for Signatera which someone else mentioned here (Thank you!). Seems promising for early detection!
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March 29, 2023
Bibi says:
Hi everyone. I'm 35 and was diagnosed with breast cancer 9 months ago. I had a lumpectomy and I am currently taking Tamoxifin. I also take an injection in my tummy every 3 months called Zoladex. 9 months ago I was fine, perfect, happy go lucky. Now I'm just miserable, depressed and I don't want to do this any more. I have 2 kids aged 8 and 6. I don't even know when last I played with them without feeling exhausted or irritable. I am moody all the time, if not crying or just want to be alone. I feel like running away from my own body. My oncologist doesn't seem to understand because when I explain my situation, he says "No it's fine". Like really? How many times I almost wanted to tell him that he has no idea what I'm going through. I am on the verge of leaving Tamoxifin because I cannot be this way. 6 months of misery and I still have 4 and a half years left? No no no. I think I'm done. I know I sound crazy but I'm still young and I'm living a horrible life.
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August 5, 2023
Lisa says:
I feel the same way as so many of you. I don't know what to do. I was a healthy, active person 1 year ago. Then diagnosed with BC, lumpectomy and radiation then tamoxifen. No one seems to understand that I no longer feel like myself. Endless aches and pains that have kept me from exercising, brain fog that is scary. I can tolerate the night sweats, but the musculoskeletal stuff is basically destroying my life. I am depressed. The doctors just seem to think this is what you just deal with to increase your chances of staying alive (apparently in my case with Tamoxifen about a 15% chance of recurrence and without a 30% chance. I feel as though there is no support system and I don't know what to do. Now I just drink more wine -- only way I could take the tamoxifen was to chug it down with wine. I am sure that is not what the doctors prescribed!
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September 6, 2023
Jen says:
Hi Lisa,
I'm in your same clinical position. My lumpectomy was a week ago, and I will start radiation soon. I really DO NOT want to take tamoxifen, and I am trying to learn all I can about recurrence. How were your percentages (30% without T and 15% with T) determined?
I hope you are doing well. I would love an update on your progress. Take care!
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September 7, 2023
Kara says:
Hi!
I too would love to hear about how your percentages were determined. I received different answers at my initial consult appointments yesterday.
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May 31, 2023
Barb Rockenbach says:
My story is almost identical other than I have one more child! I keep starting and stopping six months in but it’s making me miserable
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June 14, 2023
Jane says:
Hi My story is almost identical to yours, I am also 35, I was diagnosed at 32 with Invasive Ductal carcinoma and Colloid Carcinoma. I also had a lumpectomy in April of 2020 followed by chemotherapy, Radiation, Hormone Therapy, I started with the monthly injection and anastrolezole It was absolute torture, not to mention too expensive. I switched to Tamoxifen thinking that it would be a better option but honestly it has been torture as well. I have felt alone as it seems like people think I'm crazy when I tell them the side effects I am having like the bone pain, brain fog , hot flashes, extreme exhaustion, most recently chest pain with horrible headaches, off and on pelvic pain seems the list can go on and on. I am at the point that I don't want to take this crap anymore. I have had severe cognitive changes and have a hard time focusing at work and haven't been able to catch on to everything as I normally would have and think its to the point my employers are thinking of letting me go. I know the job and do it well just have a hard time keeping up. I love my job as a Dialysis patient care technician. Not sure if that is something anyone on here has dealt with but any advice you have is welcome. Sorry for rambling I literally have NO ONE to talk to that is my age and is going through the same situation. Thanks for listening I truly appreciate you all.
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April 7, 2023
Andrea says:
I have just the same problem! 6 months of Nolvadex and I'm thinking about to quit. You can e mail me? My bones hurts me, two weeks of depression, nights sweats, brain fog and leukopenia.
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June 8, 2023
Terri says:
I’m 68 and had a DMX Nov ‘22. Tiny tumor w/o lymph node involvement. After 2 months of research, I finally went to my Oncologist to discuss lab results from my surgery, and to hear his recommendations. I said that quality of life is more important to me than quantity, so I was opting out of taking Tamoxifen. He said that it would only decrease my chances for recurrence by 2-5%, so he agreed with me.
This is my body, my choice, and I will not have regrets about my decision…regardless of a recurrence. That’s that.
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August 2, 2023
Carol Kazee says:
I was diagnosed four years ago with DCI ass stage one clear margins. I had 30 rounds of radiation no chemo. They put me on tamoxifen I am mediately started getting severe leg cramps, bone aches, nausea trouble sleeping I actually couldn’t walk. I took it for 18 months and then quit. I’ve been off of it two years now two years ago right when I went off of it I was getting a lot of UTIs vagina dryness was back-and-forth to the doctor. I went in and they did a biopsy. I have thickening of the cervix which is the number one cause of cancer by tamoxifen I don’t have cervical cancer but I’m going in for another biopsy and I’m gonna ask for a hysterectomy, this drug is poison and they do not listen to us women they just say take it. Your symptoms will go away it’ll get better. I’m really angry I have never had the issues I have been dealing with before that drug. Severe joint pain, getting injections in my knees, having my wrist hurt my elbows hurt. Hands hurt fingers swell.
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July 22, 2023
Jean says:
I am almost 77 and I figure I don’t have much time left. I’m not going to spend five years of it feeling like this. I did the pro & con list, talked to my family. I will call my doctor this week to tell him. I got through three lumpectomy, mastectomy and a reconstructive surgery with no problems and felt great when everything was finally over. Than the pill!!!
I am sorry for you younger women with so much going on in your lives.
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August 11, 2023
Rosa says:
I agree with you, I will be 80 next month, went through a lumpectomy 13 years ago and opted out of one of those cancer pils. Now 13 years later my cancer came back in the same breast and 1.8cm size and clear markings,, I had single mastectomy and also opting out of the tamoxifen my oncology prescribed for me. I want quality of life for my years to come. Thank you for your post, and bless you.
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July 15, 2023
Bren says:
I am having to make the same decision, I am not sure the extra 2% is worth the risks and side effects. Such a tough decision!
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August 14, 2023
Crystal says:
I am a 30 year old (freshly) who was diagnosed with L breast IDC Clinical stage 1, Grade 2, in May 2023 at 29. The believe I have had it a year prior to diagnosis. I did not 'find a lump', I had to work very hard to get checked because they said I was 'too young' to have breast cancer. BRAC negative.
Had a double in June, path came back with micrometasitis in 1/8 lymph nodes on L side. Additionally, there were small tumors surrounding my 1.8mm original tumor that were not picked up on the MRI. Concluding me in a stage 2.
ONCOTYPE testing was a 12, so barely missed chemo. Thank you God.
R side was benign.
Was referred to radiology, he of course believes I need many rounds 'given my age', however, the long list of other cancers I would potentially be fighting off on top of BC did not seem appealing so I made a very personal decision and said No Thanks.
My onc wants to suppress my ovaries and put my on tamoxifen for 10 years..putting me into my 40s..stating 'you'll likely go into early menopause once we take you off'.
Just a small rant here: Why WHY WHY WHY do they not have any answers for younger women with this diagnosis. Why must they make our reproductive system old in order to deal with us.
Anyway, has anyone my age found something to be helpful? Has anyone done one and not the other, or both? Or nothing at all? I am doing alternative treatments with a Dr. in Spain and am healthy aside from cancer. It seems like all I have in my head is "do this and wait to see if it comes back, or DONT do this, wait and see if it comes back, there really is no cure. Either way, you may or may not have a reoccurrence " How do I come to a point in accepting this treatment while I am grieving my breasts, my ovaries, my child barring years, and the fact that you cannot poison your body back to health. S.O.S.
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June 1, 2022
ROXANNE JORDAN says:
My cancer was grade 2, and I had my left breast removed (tissue saving surgery). My lymph nodes were clear, but they still had me taking Tamoxifen because I was hormone receptor positive. I'm 78, have always been very active, but now I have increased joint and muscle pain. When I E-mailed my oncologist that I was discontinuing the meds, she said "Thank-you for the update. Hope you feel better soon and please let us know if anything changes." I'll see her late this month and will question her answer. In the meantime, I am searching just how long it takes Tamoxifen to leave the system. I want to return to running and weight lifting without all of this pain. Any advice would be appreciated.
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July 2, 2023
pat Ashby says:
Hi I was diagnosed with stage 2 hormone receptor type breast cancer. I was put onn tamoxifen and it ruined my life. The just recently I was diagnosed with a blood clot in my leg, due to taking tamoxifen. My oncologist told me to stop the tamoxifen immediately. I was put on aromasin but have had a four week break. Aromasin does not cause clots but makes you at risk of osteoporosis. I am already on acrete which is a prescription Vitamin D and my last bone density was normal. I am going to ask my GP for higher dose Vitamin D as this has proven to help joint pain. I am not going to take any nasty drugs such as bosphos, there is no way I want bone coming out of my jaw or tooth loss or other serios complications. So starting the aromasin, getting a good diet, starting exercising including Pilates and seeing if GP will help with joint pain. I get really angry about how much we have to put up with as women and where is the research community in helping us. Best wishes to you Patricia
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May 2, 2023
Samantha says:
Study in New Zealand with promising results for older women.
https://www.hoafredericksburg.com/some-older-breast-cancer-patients-may-not-need-adjuvant-therapy/
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October 30, 2022
Misty says:
I have read that it could take 3 or 4 months to leave your system. I see that it's been that long since your comment, so I hope you are doing well!
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September 6, 2023
Denise says:
At 68 I was diagnosed with DCIS e+ stage 0 in left breast, no family history of cancer. Had lumpectomy, then second surgery to get clean margins. Had a total hysterectomy at 32 and was on HRT until May this year. Scheduled for 19 doses of radiation due to begin in Oct. Dr. has suggested Tamoxifen for 5 years. Each Dr visit began with "You could have a radical mastectomy" Since stopping HRT cold turkey I have severe hot flashes up to 20 a day often followed by chills and nausea. I have determined to not take Tamoxifen due to having had a stroke 6 years ago and fear of blood clots and bone loss, risk/benefit doesn't seem acceptable . Dr. has agreed to six month mammograms to monitor for further cancer.
I have had thoughts of going back for mastectomy but have fears of lymphedema.
Lack of HRT has given me hot flashes, weakened bladder control, and lack of libido. Having no ovaries and no drugs do I really have a high risk of reoccurrence?
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September 7, 2023
Hello says:
Have you tried vaginal estradiol cream for incontinence? It works! My Alloy has it and is where I found it. It’s wonderful and helps I’m glad you didn’t have a mastectomy! No need for that
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July 5, 2023
Sien Zhang says:
Oh, mine! Glad to find this site. I am ER+,PR+,HER2-, stage II IDC. Did 2 surgeries, tumor is small, took 3 nodes out, 2 lymph nodes were positive. Did radiation after the 2 surgeries. Puked once during radiation, other then that everything was fine. I was on Chinese herbs to help my recovery.
Started Tamoxifen 20 mg, right after radiation and lost my hearing. One week after stopping Tamoxifen, hearing coming back slowly.
Took a 3 month break from it and tried again. This time gave me tummy pain, tolerable but my period is not longer smooth. I am currently 47.
I have heard that the week estrogen in soy actually is good for you since it took up the space the cancer cell would take.
Well, my 2 lymph nodes were swelling 3 years before I found that I had cancer. Those 3 years I was on a diet that has lots of soy. I was an experiment by accident now look back. My tumor is small could because I was taking a lot of soy. Anyway, the doc ask me to avoid soy now. I am avoiding it since this is very easy to do.
However, Tamoxifen is not so pleasant. I did stopped it since end of last year. Everything is fine until recently, I got really sore for my right side (my cancer was on my right breast) body before my period. Of course being a cancer survivor, you have more concerns.
I started to research about Tamoxifen again since I am seeing my oncologist tomorrow. Really do not want the side effects.
I do use Chinese medicine for fighting for the side effects and preventives. This is something you can consider.
Thanks and sending love to every sisters here. Hope you find your peace and have a wonderful day!
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June 30, 2023
Elena says:
Hello. I’m 69 years old and was diagnosed with invasive lobular breast cancer stage 1 grade 2. Margins clean and no cancer in lymph nodes.. Underwent lumpectomy and 5 days of radiation. I was started on Tamoxifen 20 mg a day in May 2023. Began experiencing symptoms immediately nausea, upset stomach, leg cramps and finger cramps, extremely fatigued. . A week ago developed a severe lower back muscle ache. All attributed to the Tamoxifen. Oncologist states cannot reduce the 20 mg daily dosage because studies have been limited and small . It appears Tamoxifen and the Aromatase Inhibitors present the same side effects. Strongly considering quitting. Oncologist recommended changing medication to an Aromatase inhibitor. I don’t think this will help either. Tamoxifen and Aromatase inhibitors carry same side effects.
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October 7, 2022
Rita says:
I started taking tamoxifen but brain fog, empty mind and irritable stomach plus tiredness are really worrying… I wish doctors would give us individual risk assessment instead of just prescribing it to everyone. I don’t have a medical team. In my country it’s just check up appointments with oncologist every six months…
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November 17, 2022
Key says:
I started taking tamoxifen last year. My symptoms are getting worse. It's not even the sweating for Me. My muscles are starting to ache all over, unwanted hair growth. I can't sleep for over two hours to the point where it may become hazardous to drive. When I complain it like the doctors just brush it off.
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December 8, 2022
La says:
Hi
I don't have an answer for you, but I'm going through some of the same symptoms with joint and muscle pain. I'm a therapist and personal trainer and it is very disappointing I had so much pain. I stopped taking it for now also because tamoxifen stimulates fibroids of which I now have multi-fibroids. I'm 51 diagnosed with stage 1 BC in 21'...had double mastectomy and replacement...I felt great until about 6 m in with the joint pain sweats some sleeping issue. I am having sure for a hysterectomy in February. My doc gave alternatives but the other meds are worse on the muscles and joints. I don't want to be difficult but the pain became debilitating. Cancer is worse of course but I can't deal with the symptoms. Seeking natural means now that im cancer free since the surgery...you're not alone...we will get through this. Jesus is my healer and solution for my life.
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June 29, 2023
Sharon says:
AMEN!!!
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June 30, 2023
Michelle says:
LOVE
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June 29, 2023
Raima says:
It sounds a very similar story to mine. I was feeling fine after the surgery, but since I have started taking Tamoxifen, I became anxious, not myself and tired. I didn't know Tamoxifen stimulates fibroids which I have. God help us to know what to do.
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July 23, 2022
Brenda says:
I’ve been taking tamoxifen 3 years since bilateral Mastectomy. This was for estrogen receptive +, non-hereditary cancer in right breast. Previous cancer 26 years ago in same location (had lumpectomy followed by chemo and radiation)
I am now 62 and absolutely hate being on this drug. Seriously considering stopping it short of the next 2 years. Hot flashes, hair loss, brain fog etc.
I’m having a hard time finding legitimate/compelling reasons to continue. Anyone in a similar position???
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October 12, 2022
Maggie says:
Yes! I tested being off of it for 1 week, 2 times this summer and had immediate results. So fast forward to this week October, I haven't taken it for 3 days and already feel better. My brain fog is lifting and so is my mood My joints don't hurt as badly and am looking forward to no more muscle cramps. I am working on my mental part as far as fear, guilt, etc...so will see how this goes! So grateful to have found like minded ladies!
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March 5, 2023
Tina Helms says:
I have been on Tamoxifen for 5 days. So far nothing too bad however it's early. Muscle cramps aching stomach and a couple hot flashes. I DO NOT want to take it but I'm fearful not to. I had DCIS noninvasive bc state 0. Er positive. I really wonder if Tamoxifen is necessary given my diagnosis. If I start to gain weight I'm done!
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August 29, 2023
Maggie Sprouse says:
Hi, I’m on the same boat. Diagnosed stage 0 and already have lumpectomy two weeks ago. My doctor prescribed tamoxifen 20mg. I didn’t pick up the medication yet. Since I did a lot of research on this med and study all these side effects. I don’t know if I want to go through all these hard time most the lady did. I have many friends who is on it, hate it so much.
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September 16, 2023
Heather Shields says:
I have had 4 surgeries on right breast and 2 on the left. All margins are now clear. DCIS. no lymph node involvement. Now waiting to see oncologist to discuss any further treatment. I really do not want radium or hormone therapy. I am very stressed as to what I should do. At my age 78 I am thinking i will take the risk of not going through the treatment. Quality of life is the go I think. Goodluck ladies. You are not alone .
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September 15, 2022
Jenny Eleni says:
When I read what you wrote I felt as if I was “looking in the mirror.” I detest Tamoxifen. Despite counting calories, consulting with a dietitian, hiring a personal trainer, I have gained 40 pounds! I grow a Tamoxifen beard every day and use tweezers. Hot flashes, stinky breath, brain fog, mood swings. I’m frustrated! December will be 3 years and I’m tempted to not even take Tamoxifen in the morning. I don’t see how anyone stays on the medication for 5 years. I’m considering to stop taking it but I’m terrified the cancer will return.
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June 3, 2023
Barbara says:
Please look into Babytam - I too had DCIS stage zero - estrogen positive. I take 10 mgs every other day. Or you can do 5mg daily. I am on my 5th year. No side effects until this year and they are manageable - hot flashes. 5lb weight gain (but that is most likely my fault). I’ll be off it in December. Looking forward to that but the journey on the low dose Tamoxifen has been fine. Please ask your doctor. Wishing you all the best.
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July 26, 2023
Lisa Farrell says:
Hi, I wanted to ask if you are pre or post menopausal. Because I too had DCIS last Fall, surgery only, clean margins taken, but my year after follow up, they found another microcalcification, and no cancer this time, but LCIS with AHL. So hormone therapy is recommended. I am worried stiff, for taking it and not to. I have diabetes and Afib, so I am afraid of the types of meds, and I am afraid of Tamoxifen as well. I also have a history of uterine fibroids so I worry! But I am considering 5 mg. I want a bilateral mastectomy but my oncologist thinks the risks in my case are too high for surgery.
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November 12, 2022
Maryellen Thomas says:
After my estrogen positive breast cancer Diagnosis, radiation & partial mastectomy I began tamoxifen and it was like living in hell! My hot flashes were off the charts, all day and night. I couldn’t take it anymore so my Dr finally took me off them after 3 years. That was 16 years ago. So far, do good..
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December 8, 2022
La says:
Thank you for this...I know everyone is different but this is hopeful
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January 19, 2023
Stacey says:
I lasted 8 months on tamoxifen. It was the worst 8 months of my life. I have Stage 1 Grade 2 multi focal malignant lobular BC. no lymph involvement. Had 2 surgeries (lumpectomies) and radiation. Then was prescribed tamoxifen even though I’m 65 and post meno. By the end I was, without exaggeration, suicidal. I had every single symptom. Fatigue, brain fog, mood swings, nausea, leg and foot cramps, insomnia, metal taste in my mouth, food aversions and so much more. I literally had to reset my body and Mind to get better. 4 weeks since my last does and I am a new person. Not worth it for me. I’m done with all classes of these drugs. I applaud you if you can take them!
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October 5, 2022
Denise says:
I did stop taking the medication, last Wednesday. I feel like my old self again and even lost 5 pounds without trying. The side effects were too much for me. I do worry like you about the cancer returning. I have only taken it for 3 months and it was the worst 3 months. I’m happy again.
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October 18, 2022
Julia Del Vecchio says:
I was diagnosed with hormone positive breast cancer 2 years ago at age 49 to the right breast. I had the recommended lumpectomy with negative lymph nodes. Chemo and radiation was not recommended as beneficial considering the very slow growing and otherwise non aggressive behavior of my cancer. I was starting on Tamoxifen and sadly my life has been a constant struggle for the 2 years I have been taking it. The very poor sleep alone was impacting every aspect of my quality of life. The constant bone and joint pain made exercising more challenging. I have always been very thin and now I have stubborn fat all over especially around my belly. I have abdominal bloating and discomfort. I have brain fog and find it hard to concentrate at work. I have fatigue and lack of ambition due to all the above. My oncologist insists I need to continue taking tamoxifen despite all these symptoms and prescribed a drug to help me sleep. I tried it and it did absolutely nothing for me. I want to live a long life as much as the next person but not if it means suffering for 3 more years of this. I am athletic and do hot yoga regularly eat healthy bla-bla-bla my efforts have not overcome the side effects of tamoxifen. Next my oncologist suggested another drug for depression…really…even though I’m going through all this I am still a joyful person. I’ve always have been optimistic and happy. I just want a good nights sleep. Tamoxifen is such a cheap drug there aren’t any incentives for drug companies to fund studies on the most therapeutic dose for women whilst minimizing side effects. The recent one out of Italy was promising but specifically for hormone receptor positive stage 0 ductal carcinoma in situ. Millions of women are on tamoxifen. We deserve more research on this drug and better ways to minimize the awful side effects. I believe it could mean decreasing the dose for some women depending on the behavior of their unique breast cancer because all cancers behavior is different for every person. I can’t believe we still rely on slashing, burning and using poisons to try and kill the cancer. Chemo of course being the worst. I am very sympathetic to my fellow sisters that have undergone chemotherapy or radiation. I understand that I am fortunate to have caught my cancer early. I am very grateful for this. But when considering quality of life; I have chosen to take my chances and live out the rest of my years without suffering the nasty side effects of tamoxifen. I didn’t even mention the darn hot flashes.. I am leaving out the rest of the other side effects because those are distressing but not directly impacting my health. I have hopes that perhaps if not our generation but the next will not suffer the horrific treatments of today. Better yet not get cancer in the first place. Prevention is key.
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May 10, 2023
Lori Copes says:
Thank you for your strong words! I am within weeks of the Oncologist doing final evaluation to take Tamoxifen. My cancer is very close to yours. I feel very fortunate, but in some ways guilty if i just choose to not take this drug. I have read everything i can find and come to same conclusion, this is not my path. But have so much guilt from others saying you think you know more than Oncologist. I have to be strong and remember i know myself, they dont at all-15 minutes in a room.
Thank you for your wise words!
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December 8, 2022
La says:
Thank you...you said what most are feeling and even made me laugh a little...and like you ..It was caught early..1 week after my 50th bday..stage 1 her2 positive ..I opted for double mastectomy with replacement....but the side effects of the tamoxifen was .horrible joint pain etc...I have great doctors, but stopped taking the tamoxifen....the alternative was a med with worse symptoms when I'm post menopausal...cancer is worse I know but day to day we have to have function and a quality of life that counts...I'm seeking natural nutrition and treatment...I don't want the cancer to come back but the tam was debilitating...wishing you all the best
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May 12, 2023
Ravi says:
Tamoxifen is the worst. I went through chemo, had a lumpectomy on my left breast and radiation. Started tamoxifen on March 8 so I am two months in now and I have all of the horrible side effects described here. Hot flashes, night sweats, foggy brain, extreme weakness, depression, moodiness. The side effects started immediately. I plan on stopping this drug I would rather go through chemo, surgery and radiation again. That was a picnic compared to this. My oncologist started me on 20 and did tell me to take half of it for a couple of weeks to see if it helped didn’t really change too much. It still wasn’t tolerable at half now I’m back up to the full 20 again.
I will be calling my oncologist to let her know that I am stopping this drug. I am 50 years old and I feel like I’ve lost all quality of life in these past two months. I’ve always been a trooper and follow the rules. This is the first time that I’m actually making a decision based on how I feel and what I want, not what I’m supposed to do. Good luck to everyone else suffering from the same horrific side effects. This drug is terrible.
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April 26, 2023
Star says:
Hi...So last time didn't you take tamoxifen?
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December 9, 2022
Angie says:
Yes I’m the same I was on anastzole for 2 years I got a new oncologist and had complained all the time about the side effects is the medication to my old dr whom just brushed off and said better than the alternative so I took it now I’m on tamoxifen for 1yesr snd I’m seriously quitting it but I fear cancer but even though it may keep me from getting breast cancer it could cause me to get other cancers so looks like you have to choose your evils.
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May 9, 2023
Lisa says:
I have been researching Tamoxifen reviews and alternatives for weeks now and have not yet seen any cases similar to mine. I an 61 years old. April 2022 was diagnosed with Stage 2 IDC in left breast. I had a lumpectomy, margins were clear and no lymph node involvement. Surgeon made the comment that I would not need chemo but only radiation. My Onco DX Report showed a score of 40 (high)! Oncologist recommended chemo which I did but I had a bad reaction to it during the first round. She broke the final three rounds up into nine 'smaller' rounds so that I could handle it better. She ended up cancelling the last two of the nine because I was not handling it well. I was working and active as always but one month after my final treatment, side effects kicked in and I ended up in the hospital twice because of the pain and shock of what was happening to my body. Neuropathy literally took my legs out and I could not walk without a walker for weeks. Had to leave my job (this was in November 2022) and have been unable to return to work. I made it through 30 radiation treatments that I completed in January 2023. My Oncologist wanted to start me on Tamoxifen but I was resistant. My body has been through too much! I should also mention that while in the hospital, staff overdosed me on Morphine. My pain doctor confirmed this when I told her and she reviewed my records. I made up my mind then that I was going to take charge of what is prescribed for me. I told trust medications anymore. Anyway, my Oncologist wanted to start me on 20 mg. but, because of my resistance, started me on 10 mg. I have been taking it since the end of March and am experiencing some side effects. I am scared to death to continue on this medication and she is pushing me to increase to 20 mg. Of course, at 61 years old now, I am post-menopausal. This search that I am on for information and reading so many reviews is consuming me because I feel in my heart and my head that I just don't want to take it. I feel that it's a toss up. Risk the effects or risk a recurrence. I am scared and lost.
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May 24, 2023
Nontsikelelo Xulu says:
Hi Bibi, I'm 36, I was just recently diagnosed with stage 2 breast cancer.. Its my 2nd month on tamoxifen and I'm miserable. I actually thought I was the only one feeling like this. But thanks to everyone here... I know thats not true. I also sometimes wanna stop this medication because of the night sweats which started immediately after starting tamoxifen. I'm also taking moringa powder which is more natural.
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May 22, 2023
Gigifiji says:
Hi ladies, I’m waving my white surrender flag also. Diagnosed at 36 with stage 2b dcis and idc with lymph node involvement. Did traditional treatments (chemo, surgery radiation, full hysterectomy)and I’m 2 years in to taking Aromasin/exemestane for post menopausal ER positive. The side effects of the meds seem to be cumulative and have gotten progressively worse for me, I hurt alll the time now and was previously was a very fit and active young woman. I reason with myself many of days saying “well, do you want cancer or dry skin, cancer or bone pain, cancer or thin brittle hair” and while everything in me says that having cancer is worse, my body disagrees. My knees, hands, arms, toes all ache, insomnia and hot flashes all day and all night, mood swings, constant uti’s, desert dry skin and my face has aged 10 years in a matter of 2 years, the fatigue is so bad I had to stop working and I feel dumbed down and struggle holding an intelligent conversation, my words are just not there anymore. I’m miserable. I’ve decided to quit and pursue some natural supplements and life changes along with my Faith in Christ. I can’t imagine doing another 8 years like this. My brain would be chocolate pudding in 8 more years on this med and I’ll probably end up needing a whole body replacement instead of just a knee or hip.
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March 28, 2023
Cathy says:
I had stage 1 breast cancer. I took tamoxifen for 4 years. I asked my oncologist If I could stop taking this drug. I was a full time primary teacher when taking this and the side affects I tried to manage. I would take it early in the morning arrive at work tried to calm myself down. The anxiety I had in the morning was very strange. Luckily with the brain fog I used anchor charts to help with my lessons . I hid in my classroom in the morning . I felt it affected my communication with coworkers. I would convince myself in the afternoon I felt better and would try somehow to find joy in my day. No intimacy with my wonderful, kind, supportive husband . We both missed our connection but celebrated that the cancer has not returned. After not taking tamoxifen I was more myself. I had energy , slept better, and no more brain fog. I think in life we need to remind ourselves to try our best to have a positive mindset. Today is the first day of spring. I am so grateful that this treatment has allowed me to continue to love my husband. Now as retired teacher I can celebrate every second of life with him and our grandchildren. What I have learned from taking tamoxifen the best advice I can give is connect with others who are taking the treatment for support because doubting yourself and wondering if your symptoms are REAL or just your fear that the cancer will return. A shout out to cancer survivors who are on this treatment . Congratulations you are carving out a beautiful future for yourself and family.
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March 27, 2023
LNV says:
Hi, 34 years old. Last year, at 33, I found a small lump in my right breast. I had stage 1, grade 3, invasive carcinoma, N-0; I found it very early, it was small 1.7. I did a nipple sparing unilateral mastectomy, with direct implant. No radiation was required, and chemo was optional because my score was in the middle; chemo only was 1.2% beneficial for me, because of young age, so FOR ME, the side effects of chemo would have been worst than my cancer treatment per se. Anyways, I started tamoxifen prior my surgery last year, and have been in tamoxifen over a year. Because I'm in my fertility years, the docs told me I had to stay without trying to have babies, and with my tamoxifen at least the first two years (until 03/2024), then I have to clean my system , have a baby, and continue my remaining 5 year treatment with tamoxifen. I don't know which side effects are normal and due to tamoxifen, and which symptoms are related to the psychological effects of having/surviving breast cancer. Our bodies definitely change, so is human that we feel some how depress. But godddddddddd, I'm definitely more emotional with this pill. And the mood swings are a real thing. Obviously the night sweats are too, but for me, their not the worst side effects. The emotional rollercoaster, the fatigue and the depression is. Also, thinning of hair and loss of lashes. Thank god my libido is intact though.
I told my oncologist those symptoms, the response was so unsatisfying... " therapy will help, and doing at least 4 days of exercise to alleviate the side effects of the pill". No shit, I told him...hahah . I do exercise, but I have fatigue so its not helping, and obviously the therapy will heal the emotional factors, but then again, I don't want to still talk about the C word. No everyone understands what we have gone through, and every cancer is different. So I don't want a stranger telling me how I'm supposed to feel about something that maybe she/he doesn't have idea.
Anyways... just wishing that I can deal with the side effect for one more year. And stop, and be able to have a baby. Anyone here that have stop the tamoxifen to have babies?
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April 17, 2023
Dlp says:
Just found this site when looking for how long it takes for Tamoxifen to leave the body. I had a lumpectomy 1.5 years ago. I have been taking Tamoxifen for a year. I am so miserable being on this drug. My oncologist suggested going off for a month. It has only been a week. The muscle and joint pain are awful. Also have brain fog, trouble concentrating, bleeding gums, dry skin. I could go on. I just turned 69 and get very sad thinking that this is my life for the next 5 years. I don't want to go back on it.
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May 4, 2021
Deinya Mautz says:
My mother was a 34 year survivor, diagnosed in 1955. When the opportunity to participate in the initial tamoxifen study there was no question of what to do. My participation was completed without difficulty with the exception of increased hot flashes. While they may be uncomfortable at times, hot flashes are NOT a terminal disease! Having this approach and hoping that if my participation could help even one woman, continuation was not a question. Yes, several years later I, like my sister, was diagnosed with breast cancer. Given the family history the general consensus was that perhaps the tamoxifen delayed onset for 10 or more years. When later genetic testing showed positive for Bracha 2, I decided to have a complete hysterectomy as a preventative measure. Yes, I have had cataract surgery but given my age at the time, the occurrence was considered age-related and not attributed to either tamoxifen or the 4 doses of chemo following surgery. I would do it all over again.
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March 6, 2023
DIXIE says:
Here's a comment that comes with my love for all who've trod this path. I had a lumpectomy in 2011 (no lymph involvement) followed by 30 doses of radiation and was prescribed Tamoxifen. Sounds to me, from these comments, that cruel drug hasn't improved since then. I opted to stop it after eight days/nights of misery and go on an aromatase-inhibiting diet (so easy and yummy) to which I still adhere. At the time I was organising a major community event - and continued doing so for some years, with my normal energy and enthusiasm instead of the half-dead misery that dragged around on Tamoxifen.
Please look into Aromatase Inhibiting Diet (so simple, easy and practical). Just don't ever hope cancer professionals will be interested in your progress from the day you tell them. PS: I am 83, still swimming and organising, drug free and cancer-free.
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May 24, 2023
Doris E Schichtle says:
Hi Dixie.
I just went through a lumpectomy and now in the process of visiting a Radiation Therapist and have an upcoming appointment with the Oncologist for the hormone blockage therapy, which I do not want to do after reading all the comments and side effects listed.
I have stage 0 breast cancer, right breast, Lumpectomy. My Radiation Therapist told me I do not need Radiation Therapy but I have to do the Hormone Therapy. Or I need to do the Radiation soon. I'm so confused seeing all the side effects listed. I don't think I even want to start. I already get feet and leg cramps if I don't drink enough water during the day, which I usually do but if I'm always nauseous how will I handle that?
BTW, I'm turning 79 in early July, so is all this worth having a miserable life in my last years. What would be my chances if I just did not do any treatments on getting cancer again? Would I just go through what I've already gone through and then can decide on treatments also? I do not want to be miserable in my last years. Quality of life is important to me. I'm normally active and always busy (but not lately because of neck issues from a botched job from my pain management Dr. Getting over that but slowly, but I am.
So now what? Risk or suffer through all this mess called side effects??
Opinions welcomed!
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April 15, 2023
Louuse says:
Hi Dixie can you please share which aromatase-inhibiting diet you used I so do not want to take tamoxifen. It sounds like a nightmare. I have the bottle sitting on my counter for a week now. tormenting me. If I take it. And tormenting me if I don’t.
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June 14, 2023
Nj says:
From NIH: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3074486/
From "Foods for breast cancer
https://foodforbreastcancer.com/articles/foods-that-act-as-aromatase-inhibitors
(This is the site with the list of foods)
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March 19, 2023
Bonnie says:
I looked all over the internet and can find foods that inhibit aromatase, but not an Aromatase inhibiting Diet. Could you please post it? Going to go off my tamoxifen at 4 years. the manufacturer i use (Mylan) is no longer making it and i am not willing to go through all the bad side effects again to find another manufacturer that works for me.
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June 11, 2023
Victoria deMara says:
Dixie, like others who have posted here, I would love to find the Aromatase Inhibiting Diet . . . which country are you in? And could you provide a direct link?
Thank you for sharing this vital informati
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March 13, 2023
Angela says:
I started taking tamoxifen in June 2020 and stopped taking it in December 2022. By the time I stopped it I could not complete basic needs or complete a sentence. It’s been three months I still have tremors, cold flashes, fatigue, brain fog and muscle weakness. I am trying to exercise to build muscle. The doctors want me to try letrozole but I am going to pass and take my chances.. The side effects are just as bad. Did anyone have luck with the tremors stopping? Or with building muscle? Or with the fatigue?
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April 19, 2023
Trudy J says:
I was researching what to expect after stopping tamoxifen and just found this thread. I had a lumpectomy and radiation for left breast, stage 1 DCIS. I was 51 when diagnosed and premenopausal. Yesterday I completed 5 years on tamoxifen, taking 20 and 40 mg on alternating days. Today is my first day of not taking it. My oncologist had suggested during my pervious appointment that I could do 5 more years on an aromatase inhibitor. My husband and I had already decided that I wouldn’t take the AI. I have been feeling worse and worse over these last 5 years and didn’t realize until seeing some of the posts here that I am probably having tamoxifen side affects. I could handle the hot flashes and night sweats, but the joint pain is nearly unbearable. My hips and knees make me feel like I’m 100 years old. I have cramping in my hands and feet. I’ve gained 35 pounds and now have a belly. The constant aches and pain trigger anxiety and raise my blood pressure. I am hoping that I will feel normal again soon. Thanks to everyone who has shared their journey.
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April 19, 2023
Rebecca says:
Thank you all for sharing your experiences. I have stage 1 invasive ductile carcinoma in my left breast. Scheduled to get a Lumpectomy in a few weeks. Then radiation, the Tamoxifen. Very reluctant to take this drug. But my main question is, how does Tamoxifen compare to standard menopause? All of the symptoms you are all describing are the same symptoms as traditional menopause. Hot flashes, weight gain, moodiness, fatigue, etc. So is Tamoxifen worse than menopause? Does it have more severe side effects? I'm sure a lot of women in menopause would like to stop their symptoms as well. The reason I ask is because I'm considering removing my uterus, ovaries, etc. in lieu of Tamoxifen. Yet all of the side effects are the same. So it will feel like I'm on Tamoxifen because I will enter menopause and the symptoms are the same. Has anyone gone through menopause naturally and also taken Tamo? Are they the same side effects?
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May 12, 2023
Ravi says:
Tamoxifen is not the same as regular menopause. As my oncologist described it with menopause, at least your estrogen tapers off at a normal level. Tamoxifen it’s like you’re slammed into a wall immediately. You are not producing any estrogen.
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May 12, 2023
Valerie Elliott says:
I went through menopause many years ago. My only problem wax hot flashes - no other symptoms. I started Tamoxifen a little over two months ago and do not like the way I feel. Extreme hot flashes, body aches, depression, nausea and headaches. I will try to continue on the Tamoxifen but dont think I will do it much longer if all of these side effects persist. Menopause was never like this!
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January 29, 2023
Michelle Cherrington says:
My Mum has severe hot flushes on this but her specialist is really unhelpful and doesn't offer an alternative despite mentioning at every review.
Mum had her right breast removed and 4 years later it came back on her back which they say was linked.
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September 7, 2021
Clover says:
Thank you for sharing your experience. I had been only recently past menopause when diagnosed with early stage breast cancer, and prescribed Arimidex. It’s similar to Tamoxifen, but supposed to be for post menopause. I lasted less than 2 months on it. Couldn’t get out of bed, cried a lot, joints all hurt quite a bit (and I walk daily and do yoga, so couldn’t have that happening!) I’m glad that you found alternatives to that awful drug, and hope you are doing well!
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January 11, 2023
Debra S Gurnack says:
I am currently taking tamoxifen as a preventative medication. I have put on 20lbs constant hot flashes and night sweats along with legs cramps and edema chin hairs and thinning hair. My doctor recommended tamoxifen to reduce my possibility of getting breast cancer since my great grandmother, grandmother and mother all had breast cancer after turning 80. I am not according to my DNA have the receptors for breast cancer. I am tired of my hair falling out the leg and toe cramps the constant hot flashes. I am thinking of quitting this
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March 4, 2023
Niovis Mesa says:
Please
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January 10, 2023
Safaa says:
my sister had terrible side effects after taking Tamoxifenand the Dr. could not think of any other medicine. Is there any medicine name that I could discuss with the doctor
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January 29, 2023
Michelle Cherrington says:
I would be very interested to know this as well.
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March 31, 2023
Tenboerb says:
I took femara for one month after lumpectomy. Wild mood swings, paranoia. Went to Tamoxifine, some bone pain, hot flashes but broke out in hives head to toe. Went to Raloxofene, WAY better! But now Im allergic to it as well.
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October 13, 2021
Sherry Hayes says:
I had DCIS 14 years ago and left breast I had 37 radiation treatment I decline to take tamoxifen at that time now I'm having a little blood come out of my right nipple when it is squeezed Mamo and Mr I was negative doctor wants me to go on tamoxifen for five years I really don't want to start this would like to know more about side effects I have had a complete hysterectomy when I was 23 I am now 65 thanks for any information
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August 15, 2022
Karen Admire says:
I am 58 and was diagnosed with early stage hormone receptive breast cancer right breast in 2019. I decided to have double mastectomy due to my wanting reconstruction (later discovered Precancerous cells in the other breast) I can’t remember my exact score for chance of reoccurrence, but it was definitely extremely low. The dr put me on tamoxifen for five years. I have since gone through menopause and have had minimal side effects. The one side effect I am having is so bad that I am considering stopping the tamoxifen. I’ve gained 30 pounds on this medicine and majority of it is belly and bloating. I believe this is due to the cortisol in tamoxifen. I am going to discuss further with my oncologist before I stop taking it
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April 26, 2022
Irmarie says:
The side effects are worth my health. I did it for my daughter. It’s not easy. Now I am at 20 days left of the 5 years in 20mg tamoxifen. Can’t wait to feel like myself again. With no night sweats until my real menopause comes along!
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September 27, 2022
Ioanna Exadaktylou says:
Irmarie will you stop the pill after 5 years.? Here in Greece they insist on me taking it for 5 more.i want to stop it.i m up to my limits
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November 3, 2022
Nicole says:
Ioanna, I am from the US. I didn’t want to take tamoxifen 10 years so I asked if there was a test that would evaluate the differences between 5 and 10 years. There was , it was a fairly new test, one of those index tests. My oncologist had the tissue from my tumor so I was able to take it last year, 4 years after my lumpectomy . At first my insurance didn’t cover it, but later they did. I had to ask about this test, no one offered information about it before. Maybe you can ask about this test too. It is the reason I could confidently go off Tamoxifen after 5 years.
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January 22, 2023
Rosa Corey says:
Wow, never knew there was a test. Going to ask Sloan if they are able to do this. I have been on and off tamoxifen for the past 5 years and the side affects are awful. My oncologist wants me to continue but I really don't think I can.
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October 27, 2021
Christine J Breen says:
I am 70....complete hysterectomy at 22...own my own life coach practice. Still work 3 days a week. Had estrogen driven breast cancer....not brcc type, not hereditary....(no cancer either side.)
Had lumpectomy. My test result was a 2....on the test that had to stay below 26 to avoid chemo. All test results were great.
Am on Tamoxifin now, 6 weeks.....Constant brain fog, I can't concentrate to work, write, all the things I enjoy. Bloated and abdominal pain all the time. All the side effects seem so risky. Longevity in my family is well into the 90s. I have a positive attitude, am a spiritual person, love art, writing, walking, .....just feel non plus about everything....thick headed and sit far more than I used to.
Do we know accurate stats on reoccurrence of cancer without Tamoxifin?
Thank you. This is not how I want to live my life out, but I do want to live my life out❤️. Christine
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April 13, 2022
Liz Adams says:
You raise an excellent point, Christine. I am 53 and live in New York. Not one of my Oncologists can give an answer regarding accurate stats on reoccurrence without Tamoxifen.
I stopped taking a month ago and feel more like myself. Debilitating joint pain, mental confusion and general feeling of being unwell are all gone.
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December 8, 2022
La says:
I'm in NY too diagnosed w HER2 estrogen positive stage 1..at 50 in 2021.... I decided on a double mastectomy... took tamoxifen 1year post surg... horrible joint pain muscles... I'm a personal trainer.. it was debilitating... alternatives were a med post menopausal..with worse symptoms.... i heard tamoxifen stimulates fibroids and uterine cancer...they found multi fibroids now... having a hysterectomy in two months....I know cancer is worse... I have faith in Christ AND am doing the work to find healthier ways to stay cancer free... praying all the best for everyone!
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August 11, 2022
Karen Maisy says:
Liz,
I went off tamoxifen a week ago after taking it for 2 1/2 years, wondering how long before it is out of my system totally. Diagnosed July 2019, widespread DCIS no lymph node involvement. Left side mastectomy with 2 failed reconstruction attempts. Implant failed due to the blue dye used to determine margins destroyed an area of skin (DCIS was very close to the skin). DIEP flap surgery failed 9 months later due to poor blood flow. That alone has left me a mental wreck. The tamoxifen has let me with brain fog, very emotional, and unable to lose the 20 lbs I put on after the last failed surgery. I was told the only reason to take tamoxifen is to reduce the remaining breast. No history of breast cancer in my family and at 65 I don't want to live like this anymore.
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September 2, 2022
Tara says:
Christine, you indicate your oncotype score was 2. That seems to me like your chance for recurrence while taking tamoxifen would be something like two or three percent? So it would seem to me that if tamoxifen reduces the chance by 40% of a reoccurrence that it lessens your chance of a recurrence by around 2% tops? I in no way want to tell you what to do but you should really ask your doctor to try and pinpoint about what percentage you are at risk for reoccurrence without tamoxifen. It would seem to me the difference would be very small.
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May 20, 2023
Judy says:
I came here because I am quite confused and want to know if the tamoxifen to just not feed any cancer cells that might appear. I had lumpectomy almost 5 years ago. Onco score of 2 which meant 4% chance of cancer recurrence while taking tamoxifen. I read if you don’t take tamoxifen that the percentage goes up 50%~50% of 4% is 6%. I was in tamoxifen for 2 months and the side affects were too much for me. Sadly almost 5 years out cancer has returned. Now just trying to figure it all out again. Thinking it would’ve come back with or without the tamoxifen. I was pre menopausal then and now am menopausal- thinking I will try the other meds, hoping the side effects won’t be horrible- also hoping to see if half dose will be good.
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February 24, 2023
Rosie says:
I was prescribed tamoxifen as a preventative almost a year ago but have been too afraid to start. I’m 40yo. Is it even possible to feel fine on this drug?
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July 31, 2023
Natasha Swinford says:
I started tamoxifen at 42. As much as I did not want to take it, I don't think my side effects have been too bad. For the first ocuple years, they were minimal. It's really hard to know what would have naturally occurred at my age and what was from the medicine. I did start getting hot flashes and over the years, I have gained 5-7 pounds. For me, that is devastating. I'm a fitness instructor and even have a growing YouTube channel. I've always taken care of my body and hate to see a soft belly where there never was one. I also have no sex drive at all. I just made it to 4 and a half years after the doctor testing my tumor and said 5 years was sufficient for me. I stopped taking the pill this month and hope that extra half of a year won't make a difference. I just want to go into menopause naturally and not from the drug and I made it this far. My periods are irregular now and I'm sure I'm in peri menopause. I just turn 47 this month. Since stopping tamoxifen, I find the hot flashes a bit worse but hoping that will ease up, and that I will be able to lose the extra weight. I would say definitely give it a try. You might not have bad side effects.
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May 1, 2023
Cathy says:
Rosie, I am in the same boat. My lifetime risk is 32% and I am considering going on tamoxifen as a preventative measure. Are there any readers who have had an ok experience with the drug?
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December 11, 2022
Sheri says:
I was dx'd in 2014 at 53yo but didn't have positive BRCA. I thought I'd add my two cents though in that tamoxifen can be terrible! As a scientist I needed my brain and it was destroyed within 3 months of taking tamoxifen along with night sweats. I went off. The doctor recommended another drug but I didn't do it either. I prided myself in my work and already had lost ground. I am now 7 years post drugs and no recurrence. I too would love it if they would collect statistics on those of us who defy orders. Everyone should use all of the information they have though to make an informed decision
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April 4, 2023
Krystyna says:
Your comment about having no ca recurrence despite doctors recommending you to take Tamoxifen really made my day. Have been contemplating what to do since I really hate these debilitating side effects of Tamoxifen. It gives me hope that perhaps I can adhere to an aromatase inhibiting diet and not have the cancer come back and all without the burden of taking this terrible medication.
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January 31, 2023
Andrea Berman Brenner says:
I was diagnosed at age 47 with IDC stage 2A with one positive lymph node in 2017. After a left mastectomy and 4 weeks of radiation, I started on tamoxifen. I stopped taking it after about 4 months due to chronic nausea and joint pains. I wasn’t too worried as my risk of recurrence was pretty low. Less than 3 years later, my cancer returned in same breast as localized in the skin. Thank goodness it was grade one and treatable with radiation again. After this recurrence, I decided that I should give tamoxifen a second chance. It’s been about one month and so far, so good. I keep thinking to myself that if I had only stayed the course with Tamoxifen, the cancer may not have recurred.
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April 23, 2023
Elizabeth says:
I am 82 and starting my third week of 5mg, daily dose of Tamoxifen. I had a lumpectomy six years ago and was not put on any medications. My surgeon wants me to take Tamoxifen for a month before doing the second lumpectomy and then to continue with the drug for three to five years. I think I'll be able to continue until the lumpectomy, but it's really a horrible, horrible medication. I'm on a very low dose compared to so many others yet I wake up each morning with a sense of dread -- along with headache, nausea, cramping and diarrhea. And then the anxiety kicks in, including a coupe of spells of uncontrollable weeping. I have been trying to discover information as to the survival rates for those of us in our 80s who opt for surgery alone versus those who have surgery and Tamoxifen. So far - no luck. Anyone have any information about this? So grateful to have discovered this truly helpful group.
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July 1, 2023
Sally says:
I would like to know statistics on 80 plus year olds Diagnosed with breast CA I was diagnosed in Jan 2023 Partial mastectomy in Feb Started Tamoxifen 20mg day in March been on it 3 months dose was decreased to 10mg a day
Sent my Oncologist a message was
Going to stop drug Total exhaustion hot flashes interrupted sleep, weakness unbelievable frequent urination and joint pain naps in chair I was diagnosed at 80 I turned 81 in April this year
He replied to my message he didn’t think my joint pain was from the drug but to see how I felt after being off medication for 2 weeks and If I felt a lot better would look for an alternative. Makes me wonder if I hadn’t had the annual mammogram at 80 years old possibly lived the rest of my like never knowing or needing surgery and treatment for breast cancer with an ancient drug Invasive ductal carcinoma margins clear MRI showed Neg lymph nodes
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December 9, 2022
Gwen Kearney says:
I was diagnosed with a pappilary carcinoma in my right breast, an MRI showed something in my left breast as well. Biopsy concluded the left breast had an estrogen fed cancer. I underwent a bilateral mastectomy (when tested all margins were clear) and lymph nodes from both sides were clear of any sign of cancer. My oncologist immediately put me on Tamoxifen, I can't tell you how many times I asked why. Honestly he scared the bejesus out of me because he kept saying Tamoxifen would search out and destroy the estrogen cells floating in my blood stream. And Tamoxifen would improve my degenerative osteoprosis in my hips!! I wasn't convinced but started the medication along with an intense search about Tamoxifen. Within 3 days I had mouth ulcers, a week later everything that went into my mouth felt like broken glass. Then one morning I awoke with a face so red and hot I was afraid to look in the mirror. It took 4 days to get a message through to my oncologist. After much frustration and help from my surgeon we finally connected. He did not seem a bit concerned and even denyed any knowledge that either side effect were Tamoxifen related. I did my research,I knew. My question again to him, I have no uterus, ovaries, fallopian tubes and now no breasts were is the estrogen going to go? And IF it mutates, Tamoxifen isn't going to kill it. No answers, no assurance, no offers to help with the side effects. Long story short....after discussion with my husband I quit Tamoxifen. My surgeon helped with a prescription mouth wash and advised on a cream to start using on my face. All I wanted was facts! I'm 72 and without organs dependent on estrogen what study proves I need to take Tamoxifen? Meanwhile I am getting assistance from our hospitals cancer care coordinator to find a new oncologist to provide necessary blood screening evaluations.
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November 14, 2022
Trudy Madere says:
I have major regret! Started it at 49 years old. It was a gradual thing for me. After 3 years, noticed extreme fatigue, brain fog, body aches/pain, belly fat. I am now almost 57. So have been feeling this way for almost 5 years. Feels like I’m dying, had no idea-it was menopausal symptoms. I hate feeling like this 24/7. I try to do all the right things-exercise, eat right, balanced life.
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March 23, 2023
Audrey says:
I want to thank all the women who shared there story. On 2/6/23 I had a mastectomy of my left breast. Ductal carcinoma, clean lymph nodes, clean margins, stage 1, grade2. Oncologist wants to start me on Arimidex. After researching all the side effects, I am leaning on NOT starting. I have been in prayer about this, asking God for confirmation that I am doing the right decision according to His will. After coming across this blog, I am convinced my quality of life is more important. I pray for health and healing over all of you!
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September 6, 2023
Jen says:
Hi Audrey,
I just read your post. I am in your same clinical position, and my lumpectomy was a week ago. Did you stick with your decision about tamoxifen? I would love an update on your progress.
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September 29, 2022
Angie says:
I started tamoxifen February 2022. I have struggled. I can deal with the hot flashes and night sweats but the bone pain, can’t get out of bed, extreme mood swings, no sex life and I’m only 42. I stopped for a week. But I’m also worried if I should stop even though I feel better. I lost motivation and gained weight on the meds too. I was stage 2 IDC er+. My score was 19 so 6% chance return if I take the tamoxifen. Thoughts?
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September 19, 2022
Kim says:
I was dx with dcis stage 0 a year ago. Had lumpectomy (which then showed a 1/3rd of 1mm micro invasive cancer stage 1) Had 20 rounds of radiation. Started on arimidex after that and stopped cause of vaginal dryness (painful). Now on tamoxifen. My onc put me on 10mg per day, but has since cut me down to 5mg because of a new study out of Europe that showed success with that dosage and for 3 years, not 5. He said he’s comfortable with doing the 5mg but not the 3 years because of something with the study being inconclusive on that? I also am debating whether to continue with this or not.... An insert that came on my last refill had results from a study on it. Study was women with dcis taking tamoxifen for 5 years. Out of every 1000 who took the placebo, 17 got bc. Out of every 1000 who took tamoxifen, 10 got bc. Study showed on avg, women w/dcis who took tamoxifen,lowered their chances of getting invasive cancer by 43%, from 17 in 1000, to 10 in 1000.
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February 23, 2023
Sandra Willis says:
I too had DCIS stage 0, Grade 3 with a family history but genetic testing found nothing. My radiologist wants to do 24 treatments, 16 full breast and 8 targeted. I thought that sounded like a little too much and I am going for a second opinion. Your experience and thoughts would be appreciated.
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January 5, 2023
Trish says:
I can’t stop crying after reading about all my “sisters” I never knew I had! Of course, tears come so easily when you feel like we do. Thank you all for sharing. I’m not a medical doctor, but a PhD scientist with access to medical journals & will try to get more answers.
I was diagnosed with Stage 1b IDC in 2016. Started on tamoxifen before lumpectomy + lots of radiation (my memory is horrible). After 5 years, my onco had the tumor tested & said there was “no question” that I needed to stay on the tamoxifen for 5 more years
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March 8, 2022
Virginia Rolley says:
I had stage 2 breast cancer along with it it invaded my lymph nodes on my left side. I could not take the side affects of tamoxifen and stopped. How risky is this for reoccurrence? I’m very confused.
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April 11, 2022
HEATHER MIXON says:
Small lump found in mammogram. Never knew it was there. Size of a staple, also found a microscopic place in one lymph node. I've had both removed and 6 weeks of radiation. It's been a year now. I've been struggling with so many side effects with the tamoxifen. I'm 49 as of March 5th. The discomfort in my vaginal area I can't take. I've been a good sport about the hot flashes and night sweat, depression, lack sleep but this vaginal stuff is a whole new level. I've reached out to different doctors on my team and I honestly get no relief. I feel like I'm just not sick enough for anyone to really hear me. As of today I've not been on the tamoxifen 8 days.and I feel much better. This week will be my 5th time to stop. This time I stopped it on my own do to the vaginal discomfort. I just feel like I'm young to take it and feel so bad and I'm to take my chances. I do have a since of peace about it. Sending the power of understanding to your family members and doctors along with mine. God Bless
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April 13, 2022
Wish I had taken it says:
I decided to risk it and didn't take tamoxifen for years. I was unlucky and had a reoccurrence. It's scary. I'm on arimedix and Ibrance now.
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April 17, 2023
Diane says:
Sorry to hear that. Hope you are feeling ok. Can I ask what size and grade your tumour was first time around? I am 60 and was recently diagnosed with bc, grade 1 and 11mm in size. Had lumpectomy and radiotherapy. Meant to go on Tamoxifen for 5 years but don’t want to after reading all about it, so would like to know if anyone else had a reoccurrence of a stage 1 grade 1 cancer
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April 26, 2023
Alex says:
Read the book Chris Beat Cancer.
I was diagnosed with DCIS, stage zero 7mm tumor after a routine mammogram. I am BRAC negative. One doctor recommended I have a double mastectomy with breast reconstruction. Another told me I only needed a lumpectomy. The difference of opinions is shocking. I had the lumpectomy and now the doctor is recommending radiation and tamoxifen. Thank you for your comments. If you read the book, it will enlighten you.
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June 7, 2023
Jennifer says:
Alex,
I was also diagnosed with DCIS in 2019. I am also BRAC negative. When it was found, I went for two consultations for opinions as this was new to me. I'll never forget that my doctor said it was the "best worst news" I'd ever get. I was given the same choices. But they were just that, choices. Both breast surgeons gave me the option of elective surgery with reconstruction or a lumpectomy followed by radiation and Tamoxifen. I opted for the lumpectomy also because I was not ready for such a drastic surgery such as a mastectomy. I had my lumpectomy and my sentinel lymph node removed. I did 25 rounds of radiation and I have now been on tamoxifen for 3 years. (2 more to go) I looked at it this way...Anything that will reduce my risk of reoccurrence was something I was/am willing to do. I began with 20 mg of tamoxifen, then went to 10mg. I'm now on 5 mg. I will admit that the radiation will leave you exhausted and burnt to a crisp, but you can do it. I napped every single day because I had to. The biggest issues I have with tamoxifen are the mood swings and the fatigue. I had hot flashes and night sweats in the beginning years, but they have gotten better. We are all different so we will all tolerate the meds differently. What I think of as no big deal may be a "hell no" for you. My point: give it all a shot. You can always say it's not for you but just try. Any prevention that we can give ourselves is another day we sleep easier. (unless you have night sweats!) : ) I just wanted to know for myself that I did all I could for myself. Something is better than nothing, I say.
The rest is up to the fates. Good luck with everything!
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