5mg vs 10mg of Tamoxifen

Posted by gcroemer @gcroemer, Sep 21, 2022

Hi all,
I'm currently on 10mg of tamoxifen after surgery for Invasive Ductal stage 1. I started with 20mg but my feet hurt so bad I could barely walk around my house. I've reduced to 10mg but am struggling with the weight gain and mental health issues from this medicine. Has anyone switched to 5mg with approval from their doctor and if so are side effects reduced?
Any advice is greatly appreciated. I don't want cancer again, but I also don't want to be miserable.

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@sandyrob

I just went off Anastrozole and about to try 20mg Tamoxifen. I am 75, early stage. Now reading about weight gain and other side effects from Tamoxifen. At my age I don't want to be in misery! The first oncologist I saw explained that my risk of reoccurrence is 15% AI reduces that by one half. I'll try tamoxifen for 90 days but am seriously considering going off all AI's.

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Aporto aquí mi experiencia con tamoxifeno.
A fines de 2005 tuve cáncer de mama que se manifestó en un pequeñísimo bulto.Fui operada y me retiraron 9 o 10 ganglios. Recibí rayos (una determinada cantidad pedida por el cirujano) que el radiólogo determinó aplicar en corto tiempo aumentando la intensidad.Por descuido mío ,no cuide la parte irradiada, y debí cortar el tratamiento una semana por irritación de la.piel.Pero he de comentar que no sentí nunca ninguna molestia,cansancio o malestar que alterase mi bienestar.Pero si calambres en mis piernas. Y muy intensos desde más o menos la mitad del tratamiento del tamoxifeno que empecé a tomar después de terminada la aplicación de los rayos. Pedí muchísimas veces al médico que me suspendiese ese medicamento, cosa que no conseguí. Al poco tiempo de de dejar de tomar tamoxifeno cesaron mis calambres, que eran fatales. No sé si había alguna relación pero esa fue mi experiencia.

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@callalloo

Did your oncologist base the 15% recurrence risk on genomic or other tests of tumor tissue?

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I took the latest genomic test in 2025 - Precision RT - (Prelude DX is the third party vendor) which is considered 96% accurate. It tests the excised sample after a lumpectomy with DCIS. It does the testing on the sample and also includes the other factors such as age, etc. It gives you two scores on a scale of 1-10 that is then translated into a percentage. The first is the high level number - your 10 year percentage of return with doing nothing - no meds or radiation. The second number is your 10 year percentage of return with radiation therapy. (They are now doing trials with tamoxifen). This test was ordered by my oncologist at a premier breast center in NYC at no cost to me.

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I'm commenting once again. I didn't take any AL. My treatment ended around 3 years ago. Recently my oncologist said my cancer probably wouldn't be back. Now I'm 82.

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@polianad22

How are you feeling? I heard the same story from other ladies.

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Unfortunately, I have developed gallstones, from Tamoxifen. I can't take any of the other HRTs, because of my osteoporosis. Because I am stage 1, with a Oncotype DX lower than 18, my oncologist told me I could decide to go off of it. I did, and am now taking Indole-3-Carbinol 200mg, and 1000mg, ( the amount is supposed to be at least 3000mg.) Turkey Tail Mushroom capsules. It is very expensive for me on only Social Security. Tamoxifen was $1.30 a month. There is ongoing research regarding both of these substances.

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@colely

I, too, had invasive ductal carcinoma, stage 1. I started with 5 mg., then 10, then 10.5. At 10.5 I started bleeding. Imagine having post menopause bleeding, coupled with hot flashes! I went down to 10mg. and dealt with leg pain and swelling, hair thinning and loss, hot flashes, mood swings, and brain fog. I went down to 5mg. and it is so much better. But, I didn't stop there. I take indole-3-carbinol. 200mg. It is being investigated as a more natural way to deal with ER PR positive breast cancer. It acts as an aromatase inhibitor. The trial is using 150mg. X 2. It is the only way I can try to do something, and not give up completely. I won't live with the quality of my life being so ruined by the utter crap the oncologist offer.

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How are you feeling? I heard the same story from other ladies.

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@sandyrob

I just went off Anastrozole and about to try 20mg Tamoxifen. I am 75, early stage. Now reading about weight gain and other side effects from Tamoxifen. At my age I don't want to be in misery! The first oncologist I saw explained that my risk of reoccurrence is 15% AI reduces that by one half. I'll try tamoxifen for 90 days but am seriously considering going off all AI's.

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I am 81. I decided AL's were not for me. My mental misery is just to much on them. If I get cancer again, I'll take Herceptin, being HER2+ , but not Taxol and I'll have radiation.

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I had genomic testing that yields a risk of recurrence percentage. If you had the OncotypeDX or other test that does, it's helpful. Or maybe he's relying on the stage, grade and hormone sensitivity noted in the tumor biopsy and citing statistics that apply to it. (My oncologist pretty much guessed what my OncotypeDX score might be so it was extra reassuring when the clinical and genomics perspective matched.)

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@callalloo

Did your oncologist base the 15% recurrence risk on genomic or other tests of tumor tissue?

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I don't know what it's based on.

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@sandyrob

I just went off Anastrozole and about to try 20mg Tamoxifen. I am 75, early stage. Now reading about weight gain and other side effects from Tamoxifen. At my age I don't want to be in misery! The first oncologist I saw explained that my risk of reoccurrence is 15% AI reduces that by one half. I'll try tamoxifen for 90 days but am seriously considering going off all AI's.

Jump to this post

Did your oncologist base the 15% recurrence risk on genomic or other tests of tumor tissue?

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Thank you so much for your replies. I feel seen and understood! My doctor said something is better than nothing so I'm going to try the 5mg. Apparenly this dosage isn't available in pill form here in the US, but is in Europe?? Has anyone else heard that? I'll try to use a pill-splitter to cut the 10's.
I agree that a one-size-fits-all approach isn't realistic. Am hoping more research comes out about a lower dose. There is absolutely no way I could have remained on the 20mg when I could barely walk. I am an active person and exercise is really key to my well-being. I've gained about 10-15lbs since starting tamoxifen....sigh. I will also do some further research on anastrozole and indole-3-carbinol. Thank you friends.

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