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Lobular Breast Cancer: Let's share and support each other
Breast Cancer | Last Active: 4 days ago | Replies (395)Comment receiving replies
Thanks for your perspective and thought process. I was diagnosed with ILC almost the same day as you: 12/26/23. I had a lumpectomy, but margins were not clear and I have pleomorphic LCIS, so they must be clear. I was in shock when I found out that I need another surgery - either a second lumpectomy plus radiation or a mastectomy (both requiring hormone therapy.) I still have not made up my mind. I am waiting for genetic testing results and PET scan, plus getting a second opinion. I'm just not sure what to do. I am TOTALLY not prepared to make a decision on a topic I know next to nothing about (compared to all my docs) that includes so many uncertainties, yet will affect me for the rest of my life. Previously when I was sick doctors told me what to do and I did it. That's why they study so many years, so they can advise you. I feel that it's not fair that I have to make this decision. I literally don't know what to do, and I've been stuck here for nearly a month, still can't make up my mind. Any and all help is appreciated. Thanks!
Replies to "Thanks for your perspective and thought process. I was diagnosed with ILC almost the same day..."
You are going to have to do it all. Have all the testing. Pet scan. Mri. Genetic. Ultra sound. Lymph node. Radiation. Possibly masectomy depending on if it has spread into margins and lymph nodes. Get 2nd and third opinion after all your testing. Jump on this and do all you can to save yourself. Get going.
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My thoughts are with you while you mull over your myriad of choices. We make the best decisions we can, given the information available.
In order to make my decision, I have done the following:
*I deliberately cruised past posts that talk about chemo/radiation/stage IV/Mets because they were not helpful to me making my informed decision, they simply do not match my current known experience. I hope that doesn't sound callus. It is not meant to be. Posts that don't pertain to my scenario still held the possibility of swaying my decision based on emotion, rather than rationale. But, that's just the way I approached it.
*I have watched many YouTube talks with oncology/surgeons who do this work for a living, based on the most current ILC information available. There is a wealth of educational information regarding ILC and our surgical options on the Lobular Breast Cancer FB page.
* I knew that I didn't want radiation (if at all possible, knowing it's not officially off the table) possibly affecting my body in a negative way when it came to reconstruction options and while I realize immediate effects of radiation aren't probably all that bad, it's the long-term ones you can't see up front that I want to avoid. I wanted to eliminate the lumpectomy/re-excision likelihood with ILC.
*I knew I didn't want to go flat.
Those were my primary drivers.
I think I changed my decision about half a dozen times while busy gathering my supportive reasoning and think that's pretty usual, especially given that we are under time constraints to provide an answer in the initial stage of this thing.
Best of luck to you while you come to your decision.