How many have suffered a pulmonary embolism while on tamoxifen?

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SerenityNow1756
SerenityNow1756 Member Posts: 5
edited June 2018 in Hormonal Therapy - Before, During, and After

I was diagnosed with a very small hormone+/Her2- cancer last December which was surgically removed. Clean margins and nodes. After a course of radiation, my oncologist wants me on tamoxifen for 5 years (minimally). I am extremely concerned about the possibility of a pulmonary embolism which is likely to kill me faster than this little non-aggressive cancer I have. How many of you have had a PE after starting tamoxifen? Did you have any risk factors for PE?

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  • Lula73
    Lula73 Member Posts: 1,824
    edited June 2018

    I had bilateral PEs and a DVT. No I didn’t have risk factors other than tamoxifen. Symptoms were crampy feeling in my calf for days (it was a rainy week and it felt just like the cramps I get in that leg when it rains). Then after about 4 days of crampy leg it was slightly painful to take a deep breath. A few hours later it hurt to take a deep breath. A few hours after that (in the ER after being wheeled back to the exam room from CT), it felt like I had a firework going off in my upper outer chest quadrant with every breath I took regardless of depth. Bottom line: head to ER at first sign of leg or groin cramp like pain that lasts for a couple days or if you notice any discomfort/pain while taking a deep breath. It is a rare SE, but they obviously do happen and those rare ones ususlly happen to me.

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  • gb2115
    gb2115 Member Posts: 1,894
    edited June 2018

    I think pulmonary emboli are pretty rare. Like your chances of further cancer are way higher. Doesn't mean it can't happen of course. When I asked my MO she likened the risk of clots to the slight clot risk from birth control pills. which most find an acceptable risk. Do you have a history of blood clots? Or other risk factors? Also oncologists are usually hematologists as well, so they have a good grasp on all that.

    I was convinced I would get a dvt anytime I sat for more than an hour the first year I was on tamoxifen. Drove my husband nuts the first time we took a road trip. Thankfully the fear faded!

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited June 2018

    Another thing-just having any kind of (active) cancer makes you prone to blood clots. I had a PE when I had ovarian cancer, before any surgery or treatment. gb2115 is right-very few women didn't take birth control pills because of the approximately equal risk of clotting

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  • dtad
    dtad Member Posts: 2,323
    edited June 2018

    MelissaDallas...I agree that just having any kind of cancer increases your risk of blood clots. A dear friend of mine had a stroke from uterine cancer and thats what her docs told her. I'm sure the risk is low but it does happen. Good luck to all.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited June 2018

    dtad, this says about ten percent of people who suffer a PE or DVT will be diagnosed with cancer within a year.

    https://www.stoptheclot.org/faq_blood_clots_cancer...


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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited June 2018
    Serenity, I did get a blood clot that also went to the lung after my revision surgery for DIEP flap, but I think there were mitigating circumstances. I didn’t get up and walk because it was so painful (from the liposuction), I started back on Tamoxifen 4 days after surgery per instructions from PS (should have listened to my gut and waited a few more days), and I had a narrowed iliac vein that they ended up putting a stent in. Have you considered taking a baby aspirin with the Tamoxifen? I did that for a year (including stopping for first surgery) and was fine.
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  • A1shif
    A1shif Member Posts: 5
    edited June 2018

    I am interested as well since I had a DVT after my surgery. My MO says it doesn't count because it was a surgical related DVT. I also had a DVT when I was 18 a couple of months after starting birth control pills.

    I have already had a complete hysterectomy previous to my BC. I'm wondering if the risks aren't worse with tamoxifen than with recurring or distant cancer since my odds are so low.

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  • Lula73
    Lula73 Member Posts: 1,824
    edited June 2018

    A1Schif- can you take an aromatase inhibitor instead of tamoxifen? Lower risk. Since you already had one due to BC pills, I personally would not want to risk tamoxifen. The risk with BC pills happens because the estrogen levels go up. Excess estrogen in the blood can make it sticky and cause clots. Tamoxifen does not stop estrogen production. It only blocks the estrogen being made from entering the cells. The estrogen levels in the blood therefore rise advanced it’s stick there til the liver can metabolize it. That’s why why theres a risk for clots on tamoxifen.

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  • dtad
    dtad Member Posts: 2,323
    edited June 2018

    MelissaDallas...thanks for the post. Wow! Ten percent is a lot!

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited June 2018

    dtad, yeah, I was thinking it wasn't very rare. My gyn onc felt strongly like that my PE was simply from my being so ill, immobile and dehydrated. I tested negative for all the known clotting disorders.
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  • A1shif
    A1shif Member Posts: 5
    edited June 2018

    Thank you, Lula73 for the helpful response. I have decided to forego the tamoxifen and go with aromatase inhibitors and change my diet. I think part of my issue was also the disrespect and disregard shown for my surgical choice and telling me which medihe would prescribe.

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