ILC + prophylactic mastectomy + AIs

Texas357
Texas357 Member Posts: 1,552
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I'm still undergoing chemo for Stage 3A ILC, and had a single mastectomy. I don't want to go through this again! I'm also concerned about all the side effects associated with aromatase inhibitors.

I'm considering asking if my insurance company will cover a prophylactic mastectomy on my "good side" because I've been told that ILC is known to "jump" to the other breast and also because it is so difficult to detect. I went for mammograms for 12 years straight, and even this time they almost missed it. Am I off base that this will improve my odds?

Also, the cancer was ER+/PR+. I plan to ask my oncologist if I have the 2nd breast removed, does my need for AI also go down? I want to weigh the absolute risk reduction against side effects, and I've got to believe that my absolute risk will go down substantially without breast tissue, even though I understand that the cancer cells can migrate elsewhere in the body.

Thoughts? Insights?

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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2009

    Thanks Sherri! I see you are 4 years out from diagnosis. Thank you so much for sticking around and sharing your experience.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    Like Sherri,I also opted for the bilateral from the start, although my BS did say that some insurance companies will not cover her charge of removing the prophylactic side.  I'm still waiting for the bills, so don't know if that happened with me.  I will say that the peace of mind is worth it to me. Hang in there - fellow Texas sister!

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  • Texas357
    Texas357 Member Posts: 1,552
    edited March 2009

    I just heard from my PS who said insurance companies must cover it. I may need a letter from my BS or medical oncologist, which I'm pretty sure I can get.

    PS said I could do it two ways:

    Option #1. Have the mastectomy/tissue expander done at the same time I have the LD flap/implant on the other side. Then I'd have to wait a month or two to "catch up" by having the implant on the good side.

    Option #2. Have the mastectomy/tissue expander done during the six-month period I have to wait post rads on the cancer side. That makes the most sense. That surgery was a piece of cake for me. And that way, I can have implants on both sides at the same time.

    I never thought I'd say this but I'm actually getting excited about this. It would be SUCH a weight off my mind to think I'll probably never have to go through chemo again.

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  • karen1956
    karen1956 Member Posts: 6,503
    edited March 2009

    Texas,

    I had bilat at time of original surgery. Both surgeons I interviewed highly recommended that I consider a bilat.  I am so greatful I did as the prophy side came back atypical lobular hyperplasia.  Onc said I would have eventually travelled this road again.  Even though I had the bilat, onc still recommended AI's to reduce the risk of recurrance or mets. All my docs, pcp, onc, bs tell me how important it is for me to stay on AI's. I have been on them for 2 1/2 years and onc tells me that it is possible that I will be on them even longer as that is where the research is heading.  Wishing you the best of luck.

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