1. < Breast Cancer

Invasive lobular cancer and treatment choices

Posted by denisesjourney123 @denisesjourney123, Feb 9 6:59pm

I was diagnosed with ILC in dec2023. I just had a lumpectomy and they removed 3 small tumors grade 1 and 3 lymph nodes. My lymph nodes were negative but my margins were positive. I’m scheduled for a mastectomy and estrogen blocker in the future.I’m waiting to hear if I need chemo. I am considering reconstructive surgery later. How many of you with ILC would get the mastectomy ?My right breast is fine so far. How many of you would take the estrogen blocker knowing the side effects? Thanks

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sharon44r | @sharon44r | Nov 19 5:32am

I have I’ll wither 2 dominion one quadrant. I had a lumpectomy and opted for radiation after doctor told me some people won’t stay on the pill long. I have so many other issue with pain that I really don’t want toke the hormone blocker. It’s a hard choice. But at least I Dodi 2 out of 3 things. I hope that’s enough. Good luck to you.

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sharon44r | @sharon44r | Nov 19 5:39am
In reply to @casbc "With ILC, all options are on the table. It's too sneaky and invasive not to take..." + (show)
@casbc

With ILC, all options are on the table. It's too sneaky and invasive not to take all precautions. I'm 74 so I understand your feeling unsure.

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What precautions did you take?

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kaykerz | @kaykerz | Nov 19 8:00am
In reply to @sharon44r "I am having radiation now after lumpectomy, for ILC . Oncolgist said I didn’t need radiation..." + (show)
@sharon44r

I am having radiation now after lumpectomy, for ILC . Oncolgist said I didn’t need radiation but would need a hormone blocker. I decided to see
the radiation doctor and he told me since I had 2 foci in a quadrant he thinks I should have radiation. He told me a lot of women don’t stay on the hormone blockers because of side effects.
I don’t want to take either pill since I have bad neuropathy and I’ve been on prednisone for 2 1/2 years for PMR, also osteoporosis from prednisone.
The thought of having more pain in my body would be unbearable, but if you don’t have issues, it might be worth a try.
Still not sure f I’m doing the right thing, or if I will try the pill. It’s a hard decision. I’m 75 years old with lots of other issues.
I am stage 1 grade 2 with a low recurrence score of 11
Any suggestions?

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My diagnosis was similar to yours with ILC: 74, Stage 1, Grade 2, Oncology score 6. I definitely wanted radiation but will not be taking any AI therapy. I understand that AI can only lower your chance of distant recurrence by half your score, so 3% instead of 6%. I feel that this is not beneficial enough to deal with all the side effects. You have to decide what is best for you.

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1 reply
casbc | @casbc | Nov 19 11:51am

I had a DMX and with stage 4 metastatic BC, I'm on Verzenio & Tamoxifen. I'm also getting the Signaterra test every 4 months to monitor cellular activity.

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kerynbooker | @kerynbookeraustralianoosaooooooo | Nov 20 5:09pm

i was diagnosed with same , but lymph nodes were cancerous , quite a few, so had mastectomy and radiation , also chemo . chemo first , mastectomy and then 3 weeks radiation . now on esteogen blockers , as in my 60 , i take exemestane . all going well . little side effects . got my twin to get checked she had same but in situ , she had lump removed , no radiation no further treatment . so it really depends on your stage . i was glad to have mastectomy as large tumour . you get used to it very quickly , or i did . you might have other breast removed at later date .
but i think you need MRI to pick up any further bad cells . your in good position as got it early. all the best . keryn

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kathy88 | @kathy88 | Nov 21 6:58am
In reply to @kaykerz "My diagnosis was similar to yours with ILC: 74, Stage 1, Grade 2, Oncology score 6...." + (show)
@kaykerz

My diagnosis was similar to yours with ILC: 74, Stage 1, Grade 2, Oncology score 6. I definitely wanted radiation but will not be taking any AI therapy. I understand that AI can only lower your chance of distant recurrence by half your score, so 3% instead of 6%. I feel that this is not beneficial enough to deal with all the side effects. You have to decide what is best for you.

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i have anxiety dr put me on luvox, got bad stomach pain, i cut it down 2 50 2x a day and pain went away not o have bad anxiety, so feel happy no stomach pain but bad anxiety anyone help. had stage 1 b 6 years ago. had bmx radiation and 4 years of ai s. thank you

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