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Lobular Breast Cancer: Let's share and support each other
Breast Cancer | Last Active: 3 days ago | Replies (397)Comment receiving replies
I was 1st diagnosed with ILC in 2017. I had a lumpectomy followed by 32 radiation treatments. All was good fast forward July 17 2023 a regular mammogram followed by ultrasound, biopsy and MRI and I have a recurrence of ILC. Now facing bilateral mastectomy just waiting on a date. I find myself wondering why me. What if I forget the cancer and do nothing. I really dont want my boobs cut off.
Replies to "I was 1st diagnosed with ILC in 2017. I had a lumpectomy followed by 32 radiation..."
I'm sending big hug as I recently finished radiation for a 2cm ILC (lumpectomy, 58yrs). I'm glad your mammo found the reoccurance as lobular is tricky to spot. Have you been followed annually with mammos? My onco at Dana Farber doesn't scan for a year after surgery and I am very anxious that even a diagnostic mammo won't pick anything up in October. I am on Letrozole which I'm thinking you also were prescribed. I know it is jarring to consider breast removal but if you faith in your surgeon it might be best option! oxoxo
Hello @erthling ,
What a horrible setback after all you went through. I am so sorry.
2017, for me, was also the year they saw "something" on my mammo in the exact spot they saw "something" in 2012 but dismissed. ILC does not have the benefit of being easily spotted like IDC and that scared the heck out of me. I scheduled a double mastectomy ASAP. I did this after learning how it spreads undetected, like mine did for years and reading stories like yours. Two Dr's wanted to do a lumpectomy. NO WAY! Post-mastectomy pathology revealed a 2nd area of Lobular never seen. I was so happy I made that decision.
I understand the idea of losing your breasts is unimaginable. I found myself thankful that this cancer landed on a body part I don't need to survive. Wasn't pancreas or liver. Our family and friends love us for US, not the shape of our upper bodies. It's about surviving.
My husband sees my 2 big scars and he says it reminds him how lucky he is I'm still here.
Best to you in making this decision. We have nothing without our health.
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It's so difficult with lobular. I have no symptoms. Bone only de novo mets. My FES & FDG PET were both negative. Bone scan negative. Sclertic bone lesions are seen on CT but don't light up. I have another PET upcoming and if there is no progression I can have double mastectomy. With lobular, if you can't see it does it mean it's not there? My breast doesn't even light up on PET. Mastectomy? If it will help. I don't know.