I’m advised to take tamoxifen but I don’t wang hormone therapy

Reagan14

I am 36 and was diagnosed with stage 3 breast cancer at 35 I had a double mastectomy with 28 lymph nodes removed only 5 compromised 4 being central lymph nodes. I then had chemo therapy and radiation followed I just finished with radiation and now I’m being advised to do hormone therapy and I just don’t want. I want this nightmare over with now I feel like I did a year ago but instead I’m dealing with an internal conflict which is worse because I have to decide what the best thing for me to do and I am having a difficult time making a decision. I have two girls a 4 and 5yr old and because of them I struggle with making a decision not to. What are side effects of tamoxifen? Is there anyone who hasn't done hormone therapy??? Has anyone went a holistic route.

ElaineTherese

There are tons of threads already on this question. You might want to check them out.

See, for example:https://community.breastcancer.org/forum/78/topics/860015?page=6#post_5307526

https://community.breastcancer.org/forum/55/topics/865817?page=1#post_5262235

I've been on hormonal therapy (Zoladex + Aromasin) for almost five years. I probably have five years more. It's OK. Different people have different reactions to hormonal therapy.

You were Stage 3 like me, but younger. I have two sons with autism and intellectual disabilities. I need to be there for them; I will do everything I can to stay cancer-free. Doing Zoladex + Aromasin is the least I can do for them. Good luck!

jessie123

Reagan --- I'm having the same problem as you are, but I'm 100 years older than you. My surgery was a year ago and I still haven't taken the pills. I feel like my fear is irrational because the pills really do reduce recurrence or even metastasis. I stress constantly about it. I know I should at least try the pill. I think that after the stress of all the treatment I was just done with more medicine or whatever. I've had my year of respite now so probably will try the pill soon. Logically both of us have a greater chance of a new or recurring breast cancer than of having a severe side effect from the pill. We are gambling and I think the way we are thinking that we would do very poorly in a casino. (-:

gb2115

My daughter was 4 when I was diagnosed. I've been on tamoxifen for 3 years. It has side effects, yes, all medications do. But with hormone positive cancer it's our best chance at avoiding or delaying metastatic spread. I had one positive node. My oncologist said if my cancer comes back, it would likely statistically be metastatic rather than a second breast tumor. I want my best chance at seeing my daughter grow up. Having three years of side effects under my belt, I can say the side effects are better than having my now 7 year old watching me go through recurrence or metastasis. Do I like taking it? Not at all. But it's a necessary evil in my opinion.

grainne

Please give it a try....you have nothing to lose. If it is unbearable, just stop.

I couldn't take AIs: for me, the side effects were just not worth it. Sleep seriously disrupted by hot flushes. Lying in bed in the mornings gazing at the ceiling simply unable to summon the energy to get up. Bad knee pain. Worst of all, low mood: i didn't even know what that was until i took the blasted things. It was dreadful.

I tried tamoxifen and expected the worst. Happy days... a few bearable hot flushes every day, a few leg cramps at night, slightly thinning hair noticeable only to me and my hairdresser. I'm on it almost 4 years now and the side effects are almost gone. I will happily stay on it for a full 10 years. I want to give myself the best possible chance of staying cancer free.

You should know that exercise with help you cope with any side effects, especially low mood and disrupted sleep.

Good luck x

Reagan14

thank you ladies for your responses! I know I sound crazy by saying I don’t want to even thou I’m advised I feel as crazy as I sound! Jessie 123 you gave me a good laugh and made a good point I am gambling

Claire_in_Seattle

Reagan....none of us wants to do five years or longer of anti-hormonals, but there are some areas of life where what we need to do is just suck it up and just get on with things. My oncologist told me after I had done chemo, not to discount the benefit of anti-hormonals. Stage III is nothing to play around with. Holistic is great, but only after you have done the basics. And in your case, tamoxifen is one of the basics.

Because I was older at diagnosis, I did anastrazole with minimal impact on QOL, other than I think it was easier to manage my weight, and I did have a bit of joint soreness. One time I was skiing and my hip flexor hurt. I had a blister on my opposite heel. I was one hurting puppy. But I finished the ski and taped up my foot. A hot bath did wonders for the soreness.

Recently, because of my general expansion, I have cut out wine and eating better lunches. Another case of sucking it up and doing what needs to be done. I am half way to my goal and can't wait to be done.

So good luck with the tamoxifen. Yes, you do need it. Not worth betting your life on being OK without doing the basics. - Claire

WC3

Reagan14:

The lymph node metastasis significantly increases your chance of recurrence and the purpose of the anti hormone therapy such as Tamoxifen in ER+ breast cancer is to keep any remaining cancer cells from growing.

When I first started Tamoxifen, I had a heavy sensation in my lower abdomen similar to premenstrual symptoms and I had some depression and emotional lability but that passed within a few months.

I have hot flashes but I am not sure how much of that is the Tamoxifen and how much of it is from the chemotherapy having put me in to premature menopause.

My joints feel like they have less padding, which may or may not be from the Tamoxifen. It could also just be natural aging or maybe accelerated from the chemotherapy, I'm not sure.

My uterine lining is thickened from it and there is a small risk of developing endometrial cancer but I think you have a far greater risk of having a recurrence of the breast cancer if you forgo it.

msphil

hello sweetie I was planning our 2nd marriages when I found the lump no family history. Was on tamoxifen for 5yrs had hot flashes fatigue etc but bottom line was doable. Praise God I am this yr a 26yr Survivor..msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast got married then 7wks rads. Keep Hope and Positive thoughts that I will get thru this. Hang in there

Ileepak

Dear msphil,

I am sorry you are dealing with this nightmare. I, too, struggle . . . I am 52 have always been in good health . . . good shape . . . don't drink or smoke . . . and boom cancer last year left breast lumpectomy. I am going to be honest, I started the tamoxifen last May . . . had all the side effects . . . muscle pain, constipation, dry mouth . . . the list goes on . . . . I sucked it all up and then noticed my hair was falling out in droves . . . that sent me off the deep end . . .stopped taking it in September . . . . still dealing with hair loss. I figured I will take my chances with it returning because I was miserable. I have two girls as well . .. . mine are 21 and 23 and I figured I have them raised put them through college . . . they are well on their way in their own lives . . . Ive done my job lol . . . but then they came to me in tears telling me to "please do not stop taking the tamoxifen" because they still need me and love me whether I am bald or not! So, I like you, am torn . . . I don't want to go back but I don't think there is too many alternatives, if any? I am seeing my medical oncologist this month . . . I will keep you posted. Good luck in your journey!

Ileepak

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A few seconds ago Ileepak wrote:

Dear reaghan,

I am sorry you are dealing with this nightmare. I, too, struggle . . . I am 52 have always been in good health . . . good shape . . . don't drink or smoke . . . and boom cancer last year left breast lumpectomy. I am going to be honest, I started the tamoxifen last May . . . had all the side effects . . . muscle pain, constipation, dry mouth . . . the list goes on . . . . I sucked it all up and then noticed my hair was falling out in droves . . . that sent me off the deep end . . .stopped taking it in September . . . . still dealing with hair loss. I figured I will take my chances with it returning because I was miserable. I have two girls as well . .. . mine are 21 and 23 and I figured I have them raised put them through college . . . they are well on their way in their own lives . . . Ive done my job lol . . . but then they came to me in tears telling me to "please do not stop taking the tamoxifen" because they still need me and love me whether I am bald or not! So, I like you, am torn . . . I don't want to go back but I don't think there are too many alternatives, if any? I am seeing my medical oncologist this month . . . I will keep you posted. Good luck in your journey!

Reagan14

well ladies with all your great feedback I have decided to take tamoxifen. I still decided against endocrine therapy which was advised as well but my oncologist Seemed happy that I was doing the tamoxifen.. it took me a while but grainne made a great point in saying if it’s unbearable to stop..... so I’m on my third week, and so far the only side effects were a little bit on knee pain ( first two nights only) and fatigue. I’m really hoping my hair doesn’t fall out it’s just starting to grow in 🙏🏻 But all in all I Feel pretty normal. Thank you all for sharing your experiences and thoughts I hope this helps someone else struggling with taking it or not! Hope all you ladies are well and lleepak maybe a vitamin supplement can help with hair- that’s what I’m hoping helps I have been taking a high dose of biotin daily I’m not sure how long after taking it hair falls out I’m only 3 weeks in but perhaps mention that to your oncologist to see if that may help 🤞🏼🤞🏼. Best of luck to all you strong lovely ladies

buttonsmachine

Reagan14, for me, Tamoxifen was a very mild medication, although I had a bit of a rough adjustment period the first 6-8 weeks. To be specific, I had headaches, mild nausea, and hot flashes. I was discouraged by this at first, but then my oncology nurse practitioner told me that often the side effects lessen once your body adjusts. I didn't believe her at first, but I stuck with it, and that turned out to be true in my case. After adjusting, I felt totally normal on Tamoxifen.

The "nice" thing about Tamoxifen, is that it only blocks estrogen from select cells in your body. The stronger medications that I am on now block estrogen from more cells, and as a result the side effects are greater. I hope you continue to do well on Tamoxifen! Best wishes!

Jaybird627

Hi Reagan,

I tried Tamoxifen but couldn't tolerate the side effects. My Onc. then put me on Evista for 5 (?) years. The chemo put me into menopause but I soon got my periods back for a few years. I had no side effects from Evista.

Good luck with your decision!

Jaybird

gb2115

Do they ever use Evista if you are premenopausal? I'm rapidly going from "dealing" with tamoxifen side effects to seriously losing some quality of life.

Salamandra

Hey gb2115,

Yes, the doc can describe other SERMs off label. I'm premenopausal and was not tolerating tamoxifen (I tried so many things, for so long!) and now I take toremifene and it's been so much better. My doc warned me that my insurance might not want to cover it, but that turned out ok too (maybe because I had the paper trail of different brands of tamoxifen?)

Ileepak

Dear gb211,

I am 52 and premenopausal . . . I don't think that we have much of a choice . . . but tamoxifen? Although, I have a feeling that the other hormonal treatments probably all have similar side effects. I am going to talk to my medical oncologist this week . . . I will keep you all updated. In the meantime, I just ordered rosemary extract . . . . has anyone taken it ? I would love to hear your thoughts.

Good luck Reagan . . . no decision is an easy one when it comes to cancer . . . I support everyone's individual choice and I wish you well on your journey raising your little girls!!

Eileen "ileepak"