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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,

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

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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 4/15/2019 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.

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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Oct 16, 2019 07:51PM - edited Oct 16, 2019 07:52PM by meow19

I'm sorry! I had a family emergency shortly after I posted this. Thanks everyone for your responses.

Leaf, given those figures it seems like plain old surveillance is the way to go. The problem for me (and I'm sure most of us) is that I keep reading different things regarding how much LCIS increases breast cancer risk. I've read our risk is anywhere from 1 to 2% higher than average per year. The Mayo Clinic puts our lifetime risk at 20% (which would be less than a 1% per year increase in risk) whereas I've seen studies quoting figures as high as 40%. Frustrating to say the least.

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Oct 17, 2019 02:32PM leaf wrote:

More support to 'we don't really know': This recent paper found/opined about the Tyrer-Cuzck model (which was one of the few/if any/only models that included women with classic LCIS)

A total of 1192 women with a median follow-up of 6 years (interquartile range [IQR] 2.5-9.9) were included...

Patients with prior or concurrent breast cancer, a BRCA mutation, receiving chemoprevention, or with pleomorphic LCIS were excluded.

The Tyrer-Cuzick model is not accurate and may overpredict IBC risk for women with LCIS, and therefore should not be used for breast cancer risk assessment in this high-risk population.

There used to be a model that one radiologist posted (it must have been removed), where when I was diagnosed with LCIS I could get up to a 85% breast cancer risk (without anti-hormonals.) I know some LCIS posters years ago (before these studies were published, so of course could not know about them) made their treatment decisions because of the Tyrer-Cuzick model.

Another thread complaining about the inaccuracies with the Tyrer-Cuzick model:

In any model, you have to compare the results of the model with the specific patient population you are studying. In the case of classic (let alone pleomorphic) LCIS, there isn't a whole lot of data.

Off topic: The uncertainty is anxiety provoking, but, who knows, tomorrow we might be run over by a car or have a stroke or heart attack. Life is unpredictable, but most people want more control/certainty. We may throw away the idea that we might be struck by a meteor tonight, but once you get a diagnosis that you are at risk for a big problem, most people understand anxiety better.

It makes you have empathy for the people who are given a very dismal, terminal diagnosis (in other words, a much worse prognosis than LCIS patients.) I can see that if you are given a very dismal, terminal diagnosis, it must be really, really hard to be in the position of having to comfort other people. I had a relative who was brought in to the ER,and was told by her doctor, after seeing her Xrays 'You are not going to get any better'; in other words, she was going to die. (She was a nurse.) Her first words (to her daughter who was with her) after the doctor left the room were "That must have been very hard for the doctor to tell me that." She died within the hour. I'm sure that wouldn't be my first reaction if I was told I was going to die.

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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Oct 20, 2019 04:19AM meow19 wrote:

Thanks for that study, good find. I guess it comes down to we just don't know and how much uncertainty can you handle, as you have stated. Your story about your relative does kind of put things in perspective a bit, and what a thoughtful person she was to think of the doctor of all people even before herself. Yeah that would not be my first reaction either.

So none of us are guaranteed tomorrow and in a way at least we know what we are dealing with, kind of.

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