Can't tolerate tamoxifen, they won't do chemo now will they...?

[VividDeer]

I'm 47 with diagnosis of invasive lobular breast cancer hormone positive, her2 neg.
Had two wide local incisions. 15 sessions radiotherapy. Now recovering except frozen shoulder!

Then plan was tamoxifen for 10 years

I was unable to tolerate tamoxifen. It made my whole body itch like it was on fire.

Meeting oncology to discuss options this week. The predict tool tells me tamoxifen adds 1-2% to survival rate. Will discuss this and ask my oncotype score, was told low

I've read that other options need ovary suppression or removal. Not keen obviously

I'm due annual mri scan as location of tumor was missed by mammogram.

Quite a specific ask, if anyone has any knowledge its much appreciated

There are other drugs apart from tamoxifen. I couldn’t tolerate letrazol so went on tamoxifen. There are other options.

Letrozole plus zoladex will probably be recommended, I've been on that for 2 years now after tamoxifen didn't work.

I thought those options were post menopause? Thank you for responding @Pippatpip and @SewingBees

Have you tried the original tamoxifen - Novaldex - rather than generic brands? It really can make a huge difference. I had two years of letrozole followed by three years of tamoxifen and wouldn’t have been able to continue with either if I had continued with the generic brands of either drug. I found letrozole was much harder to tolerate and I got severe, but different, side effects from every brand I tried over the first few months. My GP agreed to prescribe Femara, the original licensed drug, and the side effects reduced very significantly overnight. The same thing happened when I was changed to tamoxifen, and every generic brand caused me problems. As soon as I was prescribed Novaldex rather than generic tamoxifen, it became tolerable. Although all brands have the same active ingredient, there are differences in the formulation which I was told is what makes such a difference. I was a volunteer for the Someone like Me programme for Breast Cancer Care for several years after my cancer, and many of the women I supported who were finding the side effects hard to Cole with found a huge improvement when they changed to the original brands. GPs have to specifically prescribe Femara or Novaldex rather than just write letrozole or tamoxifen on the prescription, and are often reluctant to do so because they are very much more expensive than the generic brands, but it might be worth asking your GP if they can let you try Novaldex for a couple of months to see if it makes a difference for you.

I haven't @Growlybear83 . My friend (doctor) says I risk a worse reaction second time. Not sure I fancy trying it. My reaction was quite severe.

The addition of zoladex makes letrozole suitable for pre-menopausal women (like me)

@SewingBees were the side effects tolerable for that combo? I guess that is an ovarian suppression / aromatase inhibitor I've read about.

So worried about another reaction

All I can say is that after a few weeks on letrozole my joint pains were so severe that I couldn’t walk up the stairs without help. A week after changing to Femara, I ran for a bus (and caught it 😆). I’ve never come across anyone who had experienced serious side effects on letrozole or tamoxifen who didnt find a significant improvement when they changed to the original brands.

@Growlybear83 that's excellent news. I'm glad you were able to run for the bus and feeling well.

This is what was offered.
Can I ask how you found the sudden menopause symptoms from the ovarian suppression?
It's been offered but is my choice ultimately.
I'm in my 40s with young children so feel like I have to try it, but terrified. Especially after my tamoxifen reaction.

At first I had minimal side effects, better than when I was on tamoxifen (when I had terrible night sweats) but now, after 2 years, I'm getting joint and muscle pain. That could be due to the other drugs I'm on though, I'm under investigation at the moment.