Options if I have a clotting tendency

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Soulsmile25
Soulsmile25 Member Posts: 6
edited November 2019 in Hormonal Therapy - Before, During, and After

Hi there! I am pre-menopausal and have a HER+ invasive ductal carcinoma. I am having a bilateral mastectomy with DIEP flap reconstruction in 2 weeks. We aren't sure of the lymph involvement yet. Both my oncotype came back low and genetic tests came back negative. I was told by my breast surgical oncologist that I will most definitely be put on some type of endocrine / hormonal therapy since it was invasive. Here's my question. I had a blood clot back in my 20's triggered by birth control pills and have a higher tendency for clotting. I've read that a lot of these medications cause blood clots. Does anyone have this type of diagnosis and what was your treatment? Do you think I'll have to take preventative chemo? I'm so afraid of any of these hormone medications and also chemo. Thank you!

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  • gb2115
    gb2115 Member Posts: 1,894
    edited October 2019

    They will probably put you on an aromatase inhibitor with some sort of ovarian suppression instead of tamoxifen because of your blood clot history, make sure they know that happened to you. I believe the risk is with tamoxifen, not the other hormone therapy drugs.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited November 2019

    Soul - What did your surgeon say? Maybe you should consult a medical oncologist - who is an internal medicine doc first and specifically deals with everything cancer.

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  • KBL
    KBL Member Posts: 2,521
    edited November 2019

    I have Factor V Leiden, a blood clotting disorder, and I am also nervous to take the hormones. I have not actually had a blood clot with the Factor V. The way I found out I have it is my brother ended up twice with blood clots thrown to his lungs, so I was tested. I feel I have no choice but to take them. I would definitely talk to your doctor about it, though. I would think your chances are greater than mine since you've already had one.

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  • Nanomom11
    Nanomom11 Member Posts: 31
    edited November 2019

    I also have Factor V. My Dr told me normally since I was premenopausal I would be able to start off with Tamoxifen but with the blood clotting disorder it would give me a 10% chance of forming a blood clot vs what is usually a 1 to 2% chance. That was too high for my comfort and his so I opted for ovary suppression and Femara. As soon as I recovered from radiation I had my ovaries removed so now I am only on Femara. I have only been on these drugs since July so hopefully things will continue to go well.

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  • gb2115
    gb2115 Member Posts: 1,894
    edited November 2019

    I had written a post but it says I deleted it, but I don't think I did...weird. anyway, I think the main blood clot risk is with tamoxifen. They can put you on an AI with ovarian suppression instead.

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  • Soulsmile25
    Soulsmile25 Member Posts: 6
    edited November 2019

    Hi! Thanks everyone for responding. We are going to meet with the oncologyteam after surgery to determine a treatment path forward.

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  • Soulsmile25
    Soulsmile25 Member Posts: 6
    edited November 2019

    Nano I would be interested to hear how that is going. After talking to the preliminary team I’m feeling that’s the path I might have to take. I’ve read that AI could also increase risk so I’m not sure. A lot of info posted about all this lol!

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited November 2019

    I had PEs and DVTsat the same time prior to cancer. I have been on Coumadin/warfarin since then. 7 years of AIs including tamoxifen with no problems.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited November 2019

    I had a PE with ovarian cancer, so they wouldn't let me take tamoxifen or raloxifene, but AIs were offered since I was menopausal. I think you would have to have ovarian suppression or ovaries out to take an AI. I have seen a few here I think who had history of clots that have been allowed to take tamoxifen with baby aspirin.

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