Anyone on who did not take Tamoxifen due to risk?

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kika2013
kika2013 Member Posts: 101
edited June 2014 in Stage I Breast Cancer

Hi all--I'm 42, had a 6mm, grade 1, oncotype 5 bc removed this summer. I was all set to do Tamoxifen but it turns out I have a mild clotting disorder so am now trying to figure out what to do. One onc said yes, absolutely take it but do it with a blood thinner. Another said no, 10 years of blood thinner is too dangerous, benefit of Tamox is very small for me, risk isn't worth it, don't take it. I had a surgeon say I should take it if I could, but if I couldn't not to worry. So...as usual with bc, opinions are all over the map and I don't know what to do. I understand my risk is very low either way, but it makes me nervous to think of not taking it. On the other hand, it makes me nervous to think of falling and hitting my head and having uncontrolled bleeding, too, so...

Anyone been in this or a similar situation?

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited December 2013

    Kika - It IS a very personal decision. I had a 1.1 cm (only one dimension given in pathology, and not seen on MRI, so I don't know the actual mass). Oncotype 3. I am taking Tamoxifen. Two BS said I'd probably be ok without it, my onc says TAKE IT. For that tumor my onc would be ok with me not taking it, but what I think she left unsaid is if there was anything else not seen and not found in the mx this would help with that. I didn't take it for a year due to initial side effects, but tried again and this time it is fine. It is the best insurance I can buy, so I'm doing it. A friend of mine has a clotting disorder and takes a baby aspirin with her T (she had several opinions also). Good luck!

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  • kika2013
    kika2013 Member Posts: 101
    edited December 2013

    Thanks for your reply farmer. I have asked about taking it with an aspirin and been told that aspirin doesn't prevent DVT, so it's pointless. I am seeing another hematologist in the new year to see if someone can finally correctly assess my clotting risk based on my clinical history and test results (no history of clotting ever, including being on the pill for about 8 years total, 3 surgeries, etc). I don't feel certain that my clotting risk is high enough to not take Tamoxifen, nor do I feel certain that my cancer risk is low enough to not take it. It's depressing to met that the doctors I've met so far don't seem to be very interested in making a truly informed decision in my case. It's like they want to take the standard path.

    You don't happen to know what clotting disorder your friend has, do you? One onc did tell me he saw nothing at all in the literature about mine and Tamoxifen being contraindicated (I have a mild Protein S deficiency).

    Thanks so much.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited December 2013

    I can relate to you guys about a clotting worry. I had a blood clot when I was 16 some 40+ years ago. They treated me then with a heat lamp and blood thinners. Since then I have had 2 children. I am on Tamoxifen because I have osteoporosis and my ONC said I didn't need to be taking a drug that attacked the bones like Arimidex. Several weeks ago I noticed a burning sensation on the back of my calf - in one leg. I started researching and of course immediately thought it might be DVT. I called my ONC and they decided to do an ultrasound. I was petrified but turned out it wasn't a clot. They think it was the constant pounding I do to my legs walking on the treadmill. I walk fast and hard. Since I have been off the treadmill...no burning sensation so maybe they were right. Gotta find another form of exercise other than the walking I do. Kika -  you have a very low Oncotype score. Mine was 11 so low too. I get nervous when the doctors are divided on what to do or what to prescribe. I do have a friend who had issues with both Arimidex and Tamoxifen so she just quit taking both of them. She just celebrated 5 years out from a IDC; she had a double mx. Doctors said she didn't need to but she did anyway. BTW she is a nurse at St. Jude so she sees the C word a lot. Good luck. Diane

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