Conflicted on taking medication

Posted by rabab101 @rabab101, Oct 11, 2019

I was diagnosed with stage 2 breast cancer, grade 1
I didn’t need chemo or radiation. My oncologist informed me that I have to be on tamoxifen to reduce chances of recurrence. I was miserable.
I quit taking it after two weeks.
I’ve been a health but most of my life and have never been a pill popper.
Extremely conflicted about taking my chances without medication.
Can anyone offer me insight on how they feel about it? Please help me decide what to do. Feel free to speak your mind, respectfully of course:-)

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I have been on Anastrazole for going on 5 years now. Pending a bone density test in 2 weeks being WNL I plan to stay on Anastrazole as long as possible because the odds of recurrence for me will be lower. The side effect of Anastrazole for me is difficulty in losing weight, which is another factor that will lower my risk of recurrence. My oncologist and PCP worked a plan where I was able to take a non- hormonal med (all those new ones you see advertised on TV ARE hormonal) and I am down another 20 lbs. after a break of a few months I will resume the meds again for 3 months and will hopefully be at goal. My point is that there are ways and plans that will allow you to better your odds. Have you talked to your oncologist about alternatives to Tamoxifin? To deal with the side effects? BTW the Anastrazole side effect for me was inability to lose weight. It causes fat cells to deposit into tissues, how I am not sure, but to lose weight requires far more vigilance and activity than usual.

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So good to hear it has worked for you. In my mind I can’t justify taking anastrazole because I tend to have many body aches already. In addition to bone density, headaches and restless legs which causes me to get little sleep. My tumor was incredibly small and wrapped in scar tissue. Also I did 6 weeks of radiation. It’s been 18 months now since then and so far I’m doing extremely well without any medication. January will be my next mammogram and ultrasound. Praying that all cony to be well.

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@mchler73

Thank you for the response. It helps to hear other people’s experiences. I hope taking the low does will make it bearable for you!
I am going to ask my oncologist the how likely the cancer is to return when taking tamoxifen vs. not taking it.
I really don’t want to have to take it but maybe I will ask about trying 5mg and see how that goes.
Thanks again and take care!

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Maybe take it and if it doesn't make you sick and you are not thin and you don't get osteoporosis, take it. If it makes you sick then try another blocker. Good luck to you

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I can only tell you what I am doing. I had endometrial cancer very small but had total hysterectomy. Doc said 4% chance of getting. Everything out. Doc checks me every three months and now next check in April. Then 3months ago got breast cancer. 11mm. Took two months to have get surgery. It was 13mm out. Not in lymph nodes. Not in margins. Doc did not do radiation and my oncotype DX was 16. So no chemo. If I took antiestrogen drug the chance of cancer recurrence is 4%. If I don't 't take the chance is 8%. 4% difference is not much more risk. If I take the arimidex side effects are body aches, blood clots and osteoporosis. I already have RA that methetrexate is keeping me sane and has taken pain away and swelling of hands gone. I am thin and would get osteoporosis. I am on the border now with osteopinia. 8% probability of getting my can back is low. And taking the antihormone drug has to many. Side effects for me. I am seeing my oncologist in a month and we will discuss again but right now I am leaning away from antihormone. You have to weigh all the pros and cons and decide for yourself with your docs. Good luck!

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My understanding is that AIs cut the possibility of recurrence by 60%. My oncologist- world renowned- begged me to take Anastrozole and to contact her immediately w discomfort. She said she has an arsenal of options to fight bad side effects and other AIs to try. I’m 1A IDC er and pr + her2 neg no lymph nodes and Oncotype = 0. I am 52. I paid attention to my symptoms before taking it. Joint pain etc. I take it at night bc it makes you tired. It’s fine. I guess I’m lucky. But like the other ppl say I take it bc it so reduces the risk of recurrence. In fact many recurrence stories are ppl who did not take it.

My sister after my diagnosis was told she had a 27% chance of getting BC. We have no genetic component. She was told to start Anastrozole as well. She is not noticing much — a bit more emotional. But otherwise ok.

I think my oncologist has see. The very worst and knows how effective AIs are. I was going to do whatever needed to make it work. My 2 cents.

Good luck to you!!

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@kstar077

I can only tell you what I am doing. I had endometrial cancer very small but had total hysterectomy. Doc said 4% chance of getting. Everything out. Doc checks me every three months and now next check in April. Then 3months ago got breast cancer. 11mm. Took two months to have get surgery. It was 13mm out. Not in lymph nodes. Not in margins. Doc did not do radiation and my oncotype DX was 16. So no chemo. If I took antiestrogen drug the chance of cancer recurrence is 4%. If I don't 't take the chance is 8%. 4% difference is not much more risk. If I take the arimidex side effects are body aches, blood clots and osteoporosis. I already have RA that methetrexate is keeping me sane and has taken pain away and swelling of hands gone. I am thin and would get osteoporosis. I am on the border now with osteopinia. 8% probability of getting my can back is low. And taking the antihormone drug has to many. Side effects for me. I am seeing my oncologist in a month and we will discuss again but right now I am leaning away from antihormone. You have to weigh all the pros and cons and decide for yourself with your docs. Good luck!

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How old are you if you don’t mind me asking. I am 61 and also on the fence about taking anastrozole. I had 2.5mm mixed ductal and lobular removed with clear margins and no spread to lymph nodes. Stage 1a. 4 weeks of radiation also. I did not need chemo, I am thin with osteopenia, but healthy otherwise. My oncologist highly recommends taking anastrozole to prevent cancer reoccurrence not just in the breasts but anywhere in the body. I started it two days ago and will know in a couple of weeks how I feel. So far so good. It seems that this drug has worked well in preventing recurrences in research studies. If the side effects become unbearable I will definitely reconsider something else. It is truly a conundrum trying to figure out the risks. In the end I decided I would like to decrease the odds of cancer recurrence while also working with a naturopathic doctor. Sending healing thoughts and energy your way.

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@petal

How old are you if you don’t mind me asking. I am 61 and also on the fence about taking anastrozole. I had 2.5mm mixed ductal and lobular removed with clear margins and no spread to lymph nodes. Stage 1a. 4 weeks of radiation also. I did not need chemo, I am thin with osteopenia, but healthy otherwise. My oncologist highly recommends taking anastrozole to prevent cancer reoccurrence not just in the breasts but anywhere in the body. I started it two days ago and will know in a couple of weeks how I feel. So far so good. It seems that this drug has worked well in preventing recurrences in research studies. If the side effects become unbearable I will definitely reconsider something else. It is truly a conundrum trying to figure out the risks. In the end I decided I would like to decrease the odds of cancer recurrence while also working with a naturopathic doctor. Sending healing thoughts and energy your way.

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I am 74 years old. In good physical shape. Maybe because I am older and my life expectancy is less getting osteoporosis is more of a detriment than am 8% chance of getting breast cancer again. I am still mulling over taking the antihormone drug. Thanks for your thoughts

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In this case, take tamoxifen and survive! I am 84 and have taken it for 2+ years and will be required to take it 7+ additional years. It is tolerable, but you must resolve your psychological doubts and attitude. Not being a pill popper has nothing to do with taking this medicine. It will save your life. Without it, you are guaranteeing the recurrence of your cancer. Bad decision. Take the Mylan brand. It doesn't cause night sweats and hot flashes. Be smart and be well.

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@dick61

In this case, take tamoxifen and survive! I am 84 and have taken it for 2+ years and will be required to take it 7+ additional years. It is tolerable, but you must resolve your psychological doubts and attitude. Not being a pill popper has nothing to do with taking this medicine. It will save your life. Without it, you are guaranteeing the recurrence of your cancer. Bad decision. Take the Mylan brand. It doesn't cause night sweats and hot flashes. Be smart and be well.

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An 8% risk of recurrence does NOT guarantee a recurrence. 92% chance of no recurrence. It is a personal choice.

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@jessicanell

My understanding is that AIs cut the possibility of recurrence by 60%. My oncologist- world renowned- begged me to take Anastrozole and to contact her immediately w discomfort. She said she has an arsenal of options to fight bad side effects and other AIs to try. I’m 1A IDC er and pr + her2 neg no lymph nodes and Oncotype = 0. I am 52. I paid attention to my symptoms before taking it. Joint pain etc. I take it at night bc it makes you tired. It’s fine. I guess I’m lucky. But like the other ppl say I take it bc it so reduces the risk of recurrence. In fact many recurrence stories are ppl who did not take it.

My sister after my diagnosis was told she had a 27% chance of getting BC. We have no genetic component. She was told to start Anastrozole as well. She is not noticing much — a bit more emotional. But otherwise ok.

I think my oncologist has see. The very worst and knows how effective AIs are. I was going to do whatever needed to make it work. My 2 cents.

Good luck to you!!

Jump to this post

Did you do radiation? I have same results as you except my oncotype was 16. Maybe because I am older 74. They think the chance of recurrence of 8% is low enough without taking anti hormonal drug. And taking it would reduce by 4%. I will consider taking when I see my oncologist in a month. I also have low bone mass and anti hormal drug could throw me into osteoporosis. Thank you I will still discuss taking with my oncologist

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