Tamoxifen with family history of blood clots

Shaz1970

Hi,

I just started tamoxifen yesterday, before the oncologist prescribed it he asked if I had a history of blood clots, which I said no, as I haven't. But now I've got home and read the leaflet that comes with it, it says that you shouldn't take it if you have a close relative with blood clots. My dad died of a blood clot to his heart which had broken away from one in his leg, he also had blood clots on his brain. Now I'm panicking a little, I will ring my breast care nurse later when they are open, but just wondered if anyone's here has any opinions/experience of this. After browsing the forum, ive seen a lady who had herovaries removed instead of having tamoxifen.

I suffer anxiety, so every time something crops up that I'm not expecting, it's sends me into anxiety, which results in me being unable to establish if it's just the anxiety, or if I really do have something to worry about.

If anyone has any insight into this, please share your knowledge.

Thanks

Shaz

glowgene

Hallo!

So, I had a blood clot (pulmonary embolism) in January of 2015. After my BC diagnosis, my doctors seemed split as to whether or not I could take tamoxifen. Some said "absolutely not" and some shrugged off the risk and recommended it even after I reminded them of the PE. My medical oncologist offered me a combination of zoladex and anastrazole as a less-risky alternative, but ultimately left the choice up to me. I decided to err on the side of caution and take the take the combination therapy and avoid the tamoxifen and the risk.

So, there's a good chance you have other options if you're concerned, but if my personal history was not enough to write-off the medication for my medical oncologist, I doubt they would have bat an eye at a family member. Also, was your father ever tested for genetic clotting disorders? (ie: factor V leiden?). If he had a genetic contribution to his condition, it may be worthwhile to look into for yourself.

~glow

(caveat to most things I post: I'm 27, so my experiences may be of limited help to most)

Shaz1970

Hi glowgene

Thanks for your response. Because it was 30 yrs ago that he died, the details are sketchy at best. They weren't aware of his blood clots on the brain until after he died, technology as it was back then was very limited, my mums recollection isn't very good. He'd been in a psychiatric unit for 4 yrs, as they thought he had dementia, but after he died they realised that his brain had been starved of a significant amount of oxygen which was what had caused the 'dementia'. I was only 16 at the time and was kept away from as much information as possible, as my mum wanted to forget what she'd been through and move on with her life, which doesn't exactly help me now. 😔

No one has rang me from the hospital yet, but I know they will, once they get a chance, as they are very good. But I will just carry on taking the tablets until someone tells me to stop, cos right now I think I'm in more danger from the cancer than a blood clot, I hope 😆😆.

Thanks

Shaz.

pupmom

Shaz1970, just tell your doctor what you posted here.

farmdream

Shaz1970 - I am on Tamoxifen and take a baby aspirin every day.

My mom and grandmother both have a history of blood clots while in the hospital.

When I met with my MO 2 weeks ago she briefly discussed putting me on a blood thinner but didn't move forward.

I was having leg pain issues and she ordered a venus doppler - all was fine.

I hope you are able to speak with your doctor soon.

ShetlandPony

Another option to ask your doctor about: Continue Tamoxifen and take daily low-dose aspirin to reduce clot risk. That is what the onc recommended to me because of a family history of stroke.

Shaz1970

thanks ShetlandPony, I spoke to the breast nurse earlier, she is going to speak to the oncologist and get back to me on Friday, but did say there are other options to try. Thanks everyone.

Shaz1970

Thanks farmdream and pupmom

It helps so much to have other people's opinions on the things that are happening. Everything gets blown into such a massiv issue in my head. 😩

snuffleluffaguss

Hi Shaz,

When I had mentioned to my oncologist that my mom had been hospitalized twice for pulmonary embolism in her 30's, she ordered the 2 blood tests listed below. I got the impression that if the results had been positive, I would have been advised against starting the tamoxifen. I asked if I was still at higher risk of DVT/PE due to my mom's history, or if the negative blood test results cancelled out the risk, and the oncologist replied they didn't know since the blood tests were relatively new. So maybe you could request the blood tests if you're unsure about switching to an AI right away.

-------------------------------------------

- Factor V Leiden - Negative. No increased risk for VTE (Venous thromboembolism)

- Prothrombin mutation - Negative. No increased risk for VTE (Venous thromboembolism)

Shaz1970

thanks snuffleluffaguss that's really helpful, will mention it when they ring on Friday.

They don't want to give me the AI medication because I've had a Total Hip Replacement in my left hip, and my right hip has arthritis, he said the AI medication causes a lot of joint pain, and it would make matters worse, it might also affect my ability to use my hands which could affect my job as well.

It's all a minefield 😩