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Topic: Has anyone tried low dose Tamoxifen?

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Jun 18, 2020 01:03PM - edited Jun 18, 2020 01:22PM by PandoraX

PandoraX wrote:

I was diagnosed with Grade 2 DCIS in January. Had a lumpectomy on January 29th and the margins were clear. The tumor was 4.2 mm with necrosis. I elected not to have radiation. I'm also very reluctant to take Tamoxifen despite the urging of the nurse oncologist. She said that using the Sloan Kettering calculator that my risks for a return cancer were about 20% in the next 10 years if I do nothing. I understand that 50% of these returns can be invasive - and that the risk goes up after 10 years (I'm going on 57) and that the risk of getting any type of new breast cancer is higher. My logical mind says, "Why not try the Tamoxifen and see if I have any bad side effects before deciding not to take it?" I have the prescription sitting in front of me but I simply cannot compel myself to take one pill, knowing the potential side effects. I'm afraid the drug will make worse the menopausal symptoms I'm already struggling with (a bit of weight gain, some hot flashes, lower sex drive, some loss of sexual sensation, harder time falling and staying asleep) despite regularly exercising and good diet throughout most of my life - and also despite the fact that my estrogen levels say I haven't even reached menopause.

I read about the study on low dose Tamoxifen study and it sounds very compelling. I think I could actually wrap my head around taking a low 5mm dose. When I brought it up with my nurse oncologist, she said that there is no low dose prescription. But why not simply cut the pill in quarters? I read that in the study, some women took 10mm every other day and that seemed to work just as well. Has anyone tried this? From what I read, the suggested 20mm dose may be arbitrary and the drug is so cheap, there's no motivation to manufacture a lower dosage pill.


Dx 1/2020, DCIS, Right, <1cm, Stage 0, Grade 2, ER+/PR+
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Jun 19, 2020 05:24AM Jelson wrote:

try the Search function on the upper left of the screen, third from the bottom.I just input "low-dose tamoxifen", kept all categories/forums, and found recent posts from several people who are taking lower dosages. You might also google tamoxifen to see whether there is info on manufacturers of low dose pills. The 20mg pills are quite tiny, I can't imagine cutting them up successfully! I am not sure whether there has been a study done on tamoxifen side effects by age, but I assume that it is the premenopausal women who are most dramatically impacted. Whatever dosage you take, you can always stop.

Good luck, keep advocating for yourself.


Dx 4/17/2009, DCIS, <1cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR+
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Jun 19, 2020 09:48AM PandoraX wrote:

I was wondering if there was a search function. Thanks for pointing it out! I'm new to these boards.

Dx 1/2020, DCIS, Right, <1cm, Stage 0, Grade 2, ER+/PR+
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Jun 19, 2020 03:25PM flashlight wrote:

Hi PandoraX, I read that Italian study as well, but it sounds like most oncologist don't want to consider it because no further testing has been done. I take 10mg of tamoxifen twice a day so you are able to get a 10mg dose. In the study they cut the 10mg in half or took it every other day. I agree the tablets are very small and even with a pill cutter it would be difficult. I stayed on the 10mg tablet for some time due to side effects. Recently went back to twice a day and I'm doing well so far. You are still young!! Just give it a try and see how you do. Best wishes.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Surgery Lumpectomy: Left
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Jun 20, 2020 12:21AM PandoraX wrote:

Yes - just found that out. After much persistence, my nurse oncologist agreed to let me try the 10mg every other day - with the idea that I can gradually increase it if I don't experience any significant side effects. Fingers crossed.

Dx 1/2020, DCIS, Right, <1cm, Stage 0, Grade 2, ER+/PR+

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