Tamoxifen Experience

Hi,
I have been on it for just over 2 years now, I am now 37. I found that the flushes came soon after starting but wear off, although now and again they happen but only briefly. I did expreience depression but that may have been all my internal thoughts after the cancer, treatment and feeling lost in my career. My only issue now is tiredness. I’m not sure why but I do struggle with this daily. I don’t know if thats just me or it’s due to my age (not use to menopausal symptons) but if anyone has advice on this, I would really appreciate it!!
Thank you

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Hi Everyone, I know this post is a little old now. I am 42 and have been in Tamoxifen for almost 5 weeks. So far I have had no real notable side effects. However, because my Oncotype was 17 they now want me to have ovarian suppression through Zoladex injections. I have been asking if people have experience of this. I have had a few responses on other chats but would like to hear more. I work 3 days a week as a member of SLT in a small primary school. I am wondering whether I am going to find the job too demanding with the side effects of Zoladex. I also have two extremely lively young children.

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I’m 49 and have been on Tamoxifen since the end of November, so three months. Not too bad overall. Hot flushes and night sweats which I’m kind of managing, sleep isn’t as easy and feel rubbish after a couple of bad nights, my mood has improved since January but I think that’s seasonal. However, I keep getting constipated which isnt great. Before I didnt’ eat that healthily, but I was someone who couldn’t eat too much fruit and veg cause it gave me a bad stomach. Now its gone the other way, hate the constant bloated feeling and feel a bit mortified about it tbh.

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I also had no symptoms on Tamoxifen and used a brand called Mylan. I think what probably sometimes happens is those who take this drug go through peri menopause at the same time so it might be symptoms related to this and not the drug.

Hope all goes well for you on it. Also remember the first two weeks are settling into the drug in your body, so I think I might have got headaches but after that nothing.

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I am 58 years old and I finished on December 31 2024 with my tamoxifen treatment but I will continue on 2025 with Letrozole. The reason of the change of medication is that my oncologist said that is better for post menospausic women to change from tamoxifen to an aromatase inhibitor like Letrozole.
My case was the following: On February 2020 at 53 years old they found me 2 small tumors (0.8 mm and 0.7 mm) in my right breast and I had a lumpectomy. 7 lymph node were extracted and only the Sentinel node #3 had metastatic carcinoma, the metastatic deposit measured 0.5 cm. Doctor advised me to have radioterapia and to take tamoxifeno. I was very afraid of both and I did not follow the advice. On June 2020 doctors discover in a post operation mammogram that I had another tumor that was multiple foci, largest measuring 1.2 cm. Doctors advised me to have a mastectomy but I deny and I only authorized to have a second lumpectomy. They told me to take radiotherapy and tamoxifen but I only accepted to start the tamoxifen. I did not take radioteraphy because I was terrified to receive radiation so I said to them that I was going to take the risk.
Fortunately, 4.5 years have passed since I started tamoxifeno and no recurrence at all. My experience with tamoxifeno during this 4.5 years has been the following:

  1. Hot flashes (I learned to live with them, nothing too much terrible).
  2. Insomnia
  3. I gain weight (15 pounds) but when I started the tamoxifeno it was pandemic and everybody gained weight and I was eating heavily too and having a sedentary life, only walking in the mornings.
  4. Low libido and less interest in intimacy but because I was 53 entering in menopause, I already had a low libido before the treatment but I think tamoxifen also affected it.
  5. Heavy legs. Feet and ankles swallow.
  6. Eventually, cramps in the legs in the morning.

I could manage this side effects and I think it worth it to take tamoxifeno because I do not have any recurrence. However, I was concerned about cancer in uterus so my oncologist advised me to start the 2025 taking letrozole that does not cause cancer in uterus but can increase osteoporosis and pain in the joints, among other sides effect. I am very lucky that even though I did not have a mastectomy neither radioterapia o quimio, the hormonal therapy with tamoxifeno worked well for me and was effective. I will check in the next weeks how are the effects of the letrozole and I hope that I can tolerate as well as the tamoxifeno. This year I have started the intermittent fasting and I am trying to eat more healthy, cutting alcohol, rice, pasta and sugar. I will try to lose weight and I am planning to make more exercise, take vitamin D and calcio to prevent osteoporosis and check my bones periodically to take immediate action if any problem arises. I will be 59 this year, free of cancer and even though I am afraid of the side effects of letrozole, I will give a try. My oncologist told me that in case I have severe side effects I can return to Tamoxifen and monitor my uterus periodically to make sure everything is ok.

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I gave tamoxifen a go for 3 months, from biopsy results until the end of radiotherapy. Some people do well, or manage, some don’t.
Had most if not all of listed symptoms, and ankle swelling I noticed. Didn’t feel like me anymore, slowed brain functioning. Could not have managed at work on it.
I’d advise anyone to give it a try, as everyone is different. It wasn’t worth it in my case for the less than 2% 15 year survival according to predict, more people die of other causes meantime, and I can probably get a better percentage from an improved lifestyle- better than being depressed and drained for 5 years and unable to cope at work - which has been hard at times anyway. Had the radiotherapy which brought its own symptoms, but feeling much more zing this week after getting over that and a bad virus. Back at the gym, and my body is a temple. I’m 53, still having regular periods, no hot flushes anymore now off the tamoxifen, and much happier and with clarity of mind.
If my grade 1T1c lump had been worse, or travelled to a node ( my SLN was clear). I probably would of stuck with it for longer, I take a logical approach, on balance, I’m happy as I am.

The only thing I had noticed in week one of tamoxifen therapy was hot flashes at night. Week two brought on something unexpected. A spontaneous inflammatory response that has localized in the joint of my big toe - right foot only.

Legit the second worst pain I’ve experienced in my 32 years of life so far. Kidney stones are a bit worse. But not by much. I feel for people who deal with gout.

Lol, worst pain I had was giving birth - where I bet myself that when I die it will probably be less painful, I stand by that until it happens. Used to get gout in my toe joint years ago, its not so bad.
Using an epilator under arms was quite bad until I gave birth, then relatively to it, seemed easy to do (not used one for years, they went out of fashion, probably as caused ingrowing hairs I found).

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Going Through Breast Cancer Treatment

A breast cancer diagnosis might be frightening, but it is possible to handle breast cancer treatment with the correct strategy. The kind and stage of the cancer determine the available treatment choices, which frequently include hormone therapy for breast cancer, radiation, chemotherapy, and surgery for breast cancer.

When treating hormone receptor-positive breast cancer, hormone therapy is frequently utilized to block or reduce estrogen levels, which slows the growth of cancer. Even while it works, it can have negative consequences like bone weakening, hot flashes, and exhaustion. Managing these effects with a healthy lifestyle and medical advice is critical.

The breast cancer recovery process requires patience and self-care in addition to therapy. The body takes time to recover from surgery or chemotherapy, but mental wellness is equally important. Counseling, participation in support groups, and an active lifestyle can all aid in recovery. After therapy, it’s critical to maintain your health by eating a healthy diet, exercising regularly, and scheduling periodic checkups.

Although overcoming breast cancer is difficult, recovery is achievable with the correct medical attention, a lot of support, and self-care techniques. Keep yourself updated, have faith in your medical staff, and embrace each step with strength and optimism.

I won’t ever have children so I wouldn’t know that level of pain. Mad respect for those who have though!

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My experience with tamoxifen has been a strange one. I went on it after radiotherapy and had awful gastro issues - i mean extreme bloating that had me look bigger than when i was pregnant. The distension made my ribs sore and meant sleep was impossible i was so uncomfortable and me without sleep is not a good combination! Everyday i took the damn pill i felt like i was poisoning myself it was distressing knowing i was gonna be in agony. I messed around with the times i took it, i tried different probiotics - nothing helped. So after 3 months i spoke to the bcn and she suggested a break which i did for a month - stomach issues disappeared in less than 72 hours.

I debated not taking it (as my benefit is less that 1%) but gave it another go - and im pretty glad i did as after the break something has changed with my tolerance of it. God knows how/why but ive had NO issues so far after being back on it for 3 months - i get hot/cold flashes, my fingers and toes are a bit sore and my sleep is sometimes not amazing but nothing i cant cope with, just general menopausal woman stuff (im 47)

Just worth considering for anyone reading this that a break may change things…

Fyi i now take it with my biggest meal of the day and try to stay hydrated and i walk everyday which helps me more than i can express

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Hi, it’s really great hearing these experiences as I wait to start what I think will be Tamoxifen. I am a similar age to most of you at 45 and still having periods. I am wondering if any of you had the ovary suppressants as well? I am perimenopausal and wondering if I will have to have them or not?

I was 46 when diagnosed and been taking Tamoxifen now for 9 months, no issues at all. I was still having intermittent periods (always have been hit and miss due to PCOS) and ovary suppression was never mentioned. x

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I’m 48 and I’ve been taking Tamoxifen for a month, there hasn’t been any mention of ovary suppression for me either.

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@floss2 I was on tamoxifen for 3 months with periods and only a few minor side effect that were short lived.

My Onco felt it would be better for ER 8/8 to have Zoladex for ovary suppression and change to Exemestane (AI). I too have PCOS which may have had an influence on decision. It’s been 3 months, I’m now feeling the effects of estrogen decrease and suppression. No period, no headaches (associated with cycle) in exchange for a few hot flushes, normally at night time.

Also had first dose of zoledronic acid last week, it did make me feel rough for a couple of days and my joints are still aching. But hopefully that will pass :crossed_fingers:

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@floss2 even if you have ovary suspension still have to take Tamoxifen as the ovaries are not the only one that produce oestrogen.

Been on tamoxifen for just over a month after stoppung Anastrozole after 3 years , stopped Anastrozole due to it making me really low and anxious , started feeling much better after the break but the anxiety about going out on my own is returning now im on tamoxifen any ideas what might help

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