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Topic: Mastectomy for LCIS. How much risk reduction?

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Aug 28, 2019 12:20PM

meow19 wrote:

Hi I'm 48 and was diagnosed with LCIS back in 2013. It was about 4mm and found inside a large fibroadenoma. I've never had a mammogram and I won't be getting one. Thankfully, my doctors have never pushed me to do so and are fine with MRI's only which I am supposed to get every year, however, it has been 2 years since my last one because I am also dealing with agoraphobia which started 3 years ago. I'm particularly afraid of going anywhere medical. Still, I plan on having another one very soon as I have a couple of areas of concern in my left breast.

Given my extreme fear of going to the doctors and also not wanting to have this cloud hanging over me, etc... I've decided I will probably go to New Orleans and get a mastectomy, the kind where they use your own tissue to make new breasts. My concern is that I can't find much info on what the risk reduction will be. There is quite a bit of stuff about risk reduction with BRCA1&2 (my sister has BRCA1, but I don't). On top of that I read a case study about a woman who had a mastectomy for LCIS and then was diagnosed with stage 3 breast cancer 21 months later. They acknowledged that hers was an unusual case, but still.

So I'm kind of rambling here. My question is does anyone know how much risk reduction one can expect from having a mastectomy for LCIS?

Thank you

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Aug 28, 2019 02:10PM Moderators wrote:

Hi Meow and welcome to Breastcancer.org,

We're sorry to hear of your diagnosis, but we're really glad you've found us. We're sure you'll find our Community to be a helpful source of advice, information, and support as you make your treatment decisions.

We don't have any concrete answers about how much your risk of a future breast cancer would be reduced with a bilateral prophylactic mastectomy, but hopefully someone with more knowledge on the subject can weigh in soon. The best person to ask, however, would be your doctor.

We hope you get more information soon!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Aug 28, 2019 05:18PM jessie123 wrote:

Hi Meow 13 --- I've read the risk of developing breast cancer is about 20% for people who have LCIS. The general population risk without LCIS is about 12%. So it seems we have about an 8% greater risk than the general population. I had a lumpectomy and they found LCIS so I'll be closely monitored. I also have a stress disorder and these test make me crazy scared. I have to have a yearly MRI which is the hardest part for me. However, major surgery sounds much worse than my yearly MRI so I'm not going the surgery route. I wish the choice was cut and dry and the doctors would just tell us what to do, but they don't do that --- we have to make all the hard choices. Good luck and take your time since you don't have cancer.

Dx 11/2018, LCIS/ILC, Left, 2cm, Stage IB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/21/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 4/14/2019 Whole-breast: Breast
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Sep 7, 2019 02:23PM leaf wrote:

There is controversy about most things concerning LCIS. There is Very Little data on women with LCIS who had mastectomies, and they don't have good data on how many of these people may have had other risk factors, such as a very strong family history. (I think I read that in one person's family, every single female in their family going back at least 3 generations got breast and/or ovarian cancer.)

Models can be VERY wrong. But in this study, they found chemoprevention or bilateral prophylactic mastectomy gained a matter of a few months in life expectancy.

Assuming a breast cancer incidence from 1.02% to 1.37% per year under active surveillance, a woman aged 50 years diagnosed with LCIS would have a total LE <life expectancy>of 32.78 years and would gain 0.13 years (1.6 months) in LE by adding chemoprevention and 0.25 years (3.0 months) in LE by adding bilateral prophylactic mastectomy

After quality adjustment, chemoprevention resulted in the greatest QALE for women ages 40 to 60 years at LCIS diagnosis, whereas surveillance remained the preferred strategy for optimizing QALE among women diagnosed at age 65 years and older.

https://www.ncbi.nlm.nih.gov/pubmed/28221673

I'm sure they don't know these numbers well. But it may give you some ballpark idea.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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