Tamoxifen and Factor V Leiden

Posted by mntwin @mntwin, Dec 16, 2022

Hello,
I am just starting this journey with stage 1 breast cancer. I have increased risk of blood clot due to Factor V Leiden, and I am concerned about the added risk of blood clot from Tamoxifen. I would appreciate any experiences of anyone who has been on tamoxifen and has Factor V Leiden or other increased clot risk. I'm very nervous about it since my twin sister had a blood clot and niece, both of whom have Factor V Leiden.

Thanks so much!

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@mntwin, welcome. I can imagine that you're concerned about blood clot risk while undergoing treatment for breast cancer given that you have Factor V Leiden. I found this relevant article comparing clot risk between tamoxifen vs aromatase inhibitors.

– Risk of blood clots in breast cancer patients treated with aromatase inhibitors or tamoxifen https://medivizor.com/blog/SampleLibrary/breast-cancer/risk-of-blood-clots-in-breast-cancer-patients-treated-with-aromatase-inhibitors-or-tamoxifen/

I assume your oncologist is aware of your factor V Leiden and will monitor you closely. Were aromatase inhibitors discussed as a possible treatment option? What suggestions did your team share with you for reducing your risk of clots while on treatment or signs to watch for?

REPLY

Mntwin,
I have been diagnosed with atypical ductal hyperplasia. I explained to my oncologist that I have the gene mutation for Factor Five Leiden. I have never had a clot but my brother had clots. My oncologist didn't want to take a chance putting me on tamoxifen so I am on anastrozole. I have only been on anastrozole for 4 weeks now. Wishing you the best.

REPLY
@colleenyoung

@mntwin, welcome. I can imagine that you're concerned about blood clot risk while undergoing treatment for breast cancer given that you have Factor V Leiden. I found this relevant article comparing clot risk between tamoxifen vs aromatase inhibitors.

– Risk of blood clots in breast cancer patients treated with aromatase inhibitors or tamoxifen https://medivizor.com/blog/SampleLibrary/breast-cancer/risk-of-blood-clots-in-breast-cancer-patients-treated-with-aromatase-inhibitors-or-tamoxifen/

I assume your oncologist is aware of your factor V Leiden and will monitor you closely. Were aromatase inhibitors discussed as a possible treatment option? What suggestions did your team share with you for reducing your risk of clots while on treatment or signs to watch for?

Jump to this post

Thank you, Colleen! I am just getting started with the appointments, but my internist scheduled me with the vascular department, and he thought that while the risk is about 35 times higher than the average person, in percentage, that isn't that high. I'm just very nervous about clots given the family and friends I know who have had them. I very much appreciate the article, and prompts for discussing this as my treatment plan takes shape. This is such a very helpful resource when weighing these decisions. Thank you!

REPLY
@debbie2721

Mntwin,
I have been diagnosed with atypical ductal hyperplasia. I explained to my oncologist that I have the gene mutation for Factor Five Leiden. I have never had a clot but my brother had clots. My oncologist didn't want to take a chance putting me on tamoxifen so I am on anastrozole. I have only been on anastrozole for 4 weeks now. Wishing you the best.

Jump to this post

Debbie,
Thank you so much for sharing. This is incredibly helpful, and I really appreciate you taking the time to write. Are you having side effects with the anastrozole? Best wishes to you!

REPLY

Mntwin ,
You're welcome. I take the anastrozole at night because I didn't want to take a chance with nausea. I am having some mild hot flashes. I do have some bone pain, but I was having joint beforehand so I cannot say for sure if it is from the anastrozole.

REPLY
@debbie2721

Mntwin ,
You're welcome. I take the anastrozole at night because I didn't want to take a chance with nausea. I am having some mild hot flashes. I do have some bone pain, but I was having joint beforehand so I cannot say for sure if it is from the anastrozole.

Jump to this post

Thank you, Debbie. I appreciate knowing your experience with this. I wish you all the best!

REPLY

I also have Factor V. I was on Tamoxifen for four and a half years. I did get a blood clot that ran down my arm.
My doctors did have me stop taking the Tamoxifen but felt I didn't need to start on any other drugs. I have been cancer free since June 2008.

REPLY

abartels,
Thank you for sharing your experience taking Tamoxifen and having Factor V Leiden. It is helpful to know! So glad to know, too, that you are celebrating 14 1/2 years of being cancer free! That is wonderful! Best wishes!

REPLY
@abartels

I also have Factor V. I was on Tamoxifen for four and a half years. I did get a blood clot that ran down my arm.
My doctors did have me stop taking the Tamoxifen but felt I didn't need to start on any other drugs. I have been cancer free since June 2008.

Jump to this post

Wonderful

REPLY
Please sign in or register to post a reply.