Full body scan to see if it’s spread?

Meant letrozole

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Hi kaq

It was Anastrozole actually. The received wisdom is that all Aromatase Inhibitors - which prevent oestrogen production - reduce your risk of recurrence of hormone receptive breast cancers … but only by a few %.
I stopped taking hormone therapy for 3 reasons :

a) I was one of the unlucky ones who suffered quite badly from debilitating common side effects (I tried for 10 months). It’s the simple lack of oestrogen that causes most of these, not any particular drug ‘recipe’ itself. Some people tolerate this lack better than others, and changing to a different brand/drug can improve things for some, I hear.

b) I was terrified of them causing me any of the VERY rare but nevertheless devastating permanent damage.

c) As lobular cancer is shamefully under-researched (under-funded) and its very different subtype’s biological make-up/behaviour little-understood, the drugs currently available have been developed on the basis of ductal cancer data, therefore not targetted for lobular cancer and therefore may have little or no effect.

That’s only my personal conclusion after trying to educate myself as best a layman can, having to search for information which oncologists usually seem unwilling to divulge or discuss thoroughly. They’ll freely recommend the various drugs they’re keen to promote, though.

(The Oncotype DX scores for both my different cancers were relatively low, so chemo not considered to be of significant benefit to me.)

Best of luck with whatever path you choose :crossed_fingers: because that’s what it can ultimately boil down to anyway.

Hi Misty
Thanks for your reply. I have a similar attitude toward treatment for lobular. Everything I read was that the chemo drugs are less effective for it. I pushed back on the chemo but they said it would still help in that although it’s not as fast growing it still more rapidly dividing than normal cells (chemo kills rapidly dividing). I had more positive nodes and low intermediate onco. It’s the number of nodes that is problem I guess. Wouldn’t have needed chemo if it stopped at 1. I’m doing TC they wanted me to do AC-T which seems more toxic.

Don’t know that I’m doing right thing or that it will help - have side affects already concerned about.

I’m sorry the hormone suppressant pills didn’t work out for you. I dread that step but dealing with one thing at a time. As far as I know estrogen is good so this all sucks.

I’ve seen more on this forum about lobular than elsewhere so I think it’s good to discuss it here.

I apologize for being off the main topic here.

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