ER+, PR+, Her2- Double Mastectomy, Factor V Leiden
Hello. I was diagnosed on 10/31/24, with ER+ (100%), PR+ (100%), HER2- (2+, FISH non amplified, Ki67 3%) in the right breast. Double Mastectomy on 12/26/24. Pathology came back with additional finding of lobular insitu in left breast. No radiation or Chemo recommended, Onco score low (11), however I have a blood mutation called Factor V Leiden (heterozygous) which prevents the Oncologist from putting me on Tamoxifen. I have never had any clots. I am 48 and premenopausal. Oncologist is recommending Zoladex (monthly shot to shut down my ovaries) and Letrozole (daily). Anyone have a similar situation? The side effects from these aromatase inhibitors is very scary and I want to know if there are other options? Is there any way to have your cancer cells looked at to see if their characteristics increase your risk for recurrence? Thanks for any help and feedback.
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Hi @vieveistough2, Your Onco score should also provide you with a recurrence probability in 9 years if you use anti estrogen therapy. You can double that number to estimate your recurrence chance without HT. For example, if your recurrence probability were 5% with HT it would be 10% without. Since this is a statistical probability it can’t predict what will happen to you. Ask your MO about your score.
Some people have no trouble with ovarian suppression and AIs while others decide to have their ovaries removed to avoid the side effects of zoladex. Also, AIs cause side effects for some people but not for others and in varying degrees. There are three types of AI and often people find one of them easier to tolerate than the others.
It’s a lot to consider and a good idea to discuss the possibilities with your MO. Ask what could be done to alleviate any potential side effects. Also, you need to figure out what amount of risk you are comfortable with if you decide not to take AIs. Good luck with your decision.
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Hi @vieveistough2! Welcome to Breastcancer.org, and thank you for sharing your story. We're sure you'll find this community a great place for support and information.
We know that the side effects from aromatase inhibitors can be challenging for some. It's great that you're considering all your options. You might find this article on our site about hormone therapy helpful: Aromatase Inhibitors versus Tamoxifen for Pre-Menopausal Women Diagnosed With Early-Stage, Hormone Receptor-Positive Disease
There are also discussions about side effects, and personal experiences in our Hormonal Therapy - Before, During, and After forum. Feel free to take a look and post also there.
@maggie15, thank you for such a thoughtful and detailed response!
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