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Topic: Anyone else offered Tamoxifen as a preventative medication?

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Oct 28, 2019 02:29AM

Oz2019 wrote:

Just wondering others' thoughts. I have chosen not to go on it but if others are on it I'm just interested in everyone's point of view.


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Oct 28, 2019 11:28AM - edited Oct 28, 2019 03:14PM by LynnVB

Yes, I was offered Tamoxifen after my diagnosis of ALH in 2017. I opted for increased monitoring every 6 months. My oncologist supports my decision. I am happy with having lots of “eyes" on me basically every three months between yearly physical, gyn, breast surgeon 2x a year, onco 2x a year, and mammo/MRI

1/2017 -Biopsy results Focal Atypical Lobular Hyperplasia involving adnosis with calcification.
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Oct 28, 2019 12:27PM msmaddy72 wrote:


Yes, I was on Tamoxifen from fall of 2012 after my radiation treatment, to spring of 2015. What question do you have about Tamoxifen? My cancer was Stage 2, Estrogen positive. I am currently on Zoladex, a monthly injection.


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Oct 29, 2019 04:55PM edwards750 wrote:

I was originally given Arimidex but when I developed osteoporosis my MO switched me to Tamoxifen because Arimidex attacks the bones.

I took Tamoxifen for 4 years. I had joint pain and hot flashes but other than that the side effects were manageable. There are women who suffered debilitating side effects from the drug and had to quit taking it. After all you have to have a quality of life.

I was 8 years out last August. I had IDC, Stage 1b, Grade 1. I had a lumpectomy and 33 radiation treatments.

I never considered not taking it. I looked at it as another insurance policy against a recurrence but to each her own. I know ladies who also opted out. Some had positive results, others did not.

It’s comforting when your doctor is okay with not taking it but the fact is it’s your life not your doctors. I didn’t want to look back years later and wonder what if.


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Oct 29, 2019 07:24PM MelissaDallas wrote:

I think the question is really directed at women with things like atypia-ADH, ALH, LCIS, etc. who have never been diagnosed with cancer butwho are offered prophylactic meds.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Oct 29, 2019 07:39PM Lea7777 wrote:

Yes. Tried it, the low 5 mg dose and could not tolerate the side effects after only 10 days. Side effects went away in about a week after stopping the drug. A different medication has been completely tolerable, though, as a prophylactic.

I'm glad I did try Tamoxifen along with a couple of other estrogen blockers that also were not tolerable. My thought is at least I gave those drugs a shot. And I did find one that is ok, even though 3 were not.

Good luck to you Oz2019.

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Oct 29, 2019 09:00PM LynnVB wrote:

Yes, that was my thought too, this post was about benign conditions. My BS stated that over identifying benign conditions has a positive and negative impact. I feel like my ALH was actually there 5 years before the actual diagnosis based on a call back I had back then. The radiologist at that time said it was a benign spot-no worries. Fast forward 5 years and now it needs a biopsy and excision with talk of chemo prevention. I agree with my surgeon and oncologist who said, it's all about how comfortable/anxious I am with the diagnosis. I can live with that for now.

1/2017 -Biopsy results Focal Atypical Lobular Hyperplasia involving adnosis with calcification.
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Oct 31, 2019 09:18AM Oz2019 wrote:

Thanks everyone.

I actually haven't had cancer but am considered high risk due to 2 sisters having pre-menopausal cancer (1 bilateral). One passed away at 51 and the other now has secondaries at 57. I am 53.When I first joined, I was thinking this was an Australian site, because I do think that there are different protocols in the US and I often get very different answers if I post on a non-Australian site. I notice here that people are presuming I have had some form of benign diagnosis along the way but I haven't. I've been offered it as a preventative medication due to the risk factor. I know my sister complained bitterly about the medication.

I appreciate everyone giving me their constructive and honest opinions.


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Nov 14, 2019 09:59PM CaringMommy wrote:

I'm currently taking Tamoxifen, after a diagnosis of ADH in 2016, then ALH in 2018, then more ADH six months later in 2018. It's definitely not a decision I took lightly, given all the possible side effects. I consulted with two oncologists, who were both in agreement that the benefits outweighed the risks, at least for me personally. The first few months of taking it were very rough, but then my body seemed to adjust. The side effects since then haven't been too bad: no mood swings, just the occasional hot flash and every once in awhile I feel queasy. I'm also concerned about bone loss, because I've been told that Tamoxifen will affect women differently, if they are pre vs. post menopausal. The biggest issue so far was that I had hypercalcemia and very low parathyroid hormone levels earlier this year, but that was attributed to the calcium supplements I was taking, not the Tamoxifen itself. I definitely think that the decision should be made on a case by case basis, depending on individual needs.

Hope that helps!

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Nov 16, 2019 08:57AM Oz2019 wrote:

Thank you.

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