Hormonal Therapy for HER2+ Age 40 side effects

eva3

Diagnosed last year in May with HER2+ , prime stage 1A breast tumor , Ki67: 45% with low positive estrogen levels and negative progesterone levels.

BRCA 1 + 2 test came negative. I went through 12 chemotherapies and 23 radiation therapies. Now on tamoxifen ( nolvadex antiestrogen pill) for the next 5 years. My period has stoped at the end of chemotherapies last November.

My blood analysis 3 weeks ago showed FSH 11.50IU/L , LH 8.2 mIU/ml and Oestradiol 244.9 pg/ml and my oncologist says is too high and i will have to take monthly injections for 2 or 3 years in order not to have a period cycle and that now my hormones are high.

I have heard too many stories of young women , after or during these hormonal therapies , losing their will or ability to gain any sort of pleasure from sleeping with their husbands and could never feel like before , nor able to enjoy anything anymore. On top of that they are gaining weight and losing hair. All these effects sound terrifying for me , and i believe that my tumor and situation is not that serious or dangerous that if i dont take this LHRH monthly hormonal injections , i am at high risk of having this cancer again.

Anyone here who has same or similar situation and chose to avoid this hormonal therapy? Others who went under this hormonal therapy , are the effects so common and so psychological frustrating with no solution?

Thanks

hapa

I'm not sure what makes you think your situation isn't that serious or dangerous. Was it the IA staging? Staging these days is based on survival statistics. Survival is influenced by the availability of treatments. 20 years ago your cancer would have been a death sentence. So I would think twice before passing up any treatments without at least trying them.

I understand your concerns about the hormonal therapy. You really should discuss with your oncologist what benefit you'd get from taking it. It may be you only gain a couple percent survival benefit and it truly isn't worth it, or it may be your best bet against recurrence. But if your cancer comes back, you are on this stuff forever. Her2+ cancer has a tendency to recur in the first two years so maybe you can compromise by taking it for two years only?

There are also things you can do to mitigate the side effects. Try different medicines if your hair thins, stay active to avoid developing the aches and pains. Estrogen creams or suppositories can help with the libido. Most importantly, don't go into it with the assumption that you're going to have all these side effects - the body-brain connection is no joke. I've had no hair loss or joint pain. Not super excited about using the estrogen cream, which I finally broke down and asked for a few months ago, but I'm going to suck it up for three more years. And not everybody on anti-hormonals has this problem either. I think it's more of a use it or lose it situation but my husband just wasn't willing to put forth any effort so fuck it (or don't fuck it, as the case may be).

The nice thing about drug therapies, is that unlike surgery or radiation, if you don't like the side effects you can just stop taking it. So I'd at least give it a shot and then decide if you can tolerate it.

Good luck with whatever you decide.

MelissaDallas

eva3, you really do need to extensively discuss this with your MO. The fact that you are HER + and PR- indicates you have an aggressive cancer, even if it was luckily caught at an early stage