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Topic: LCIS Situ new to the forum

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

Posted on: Feb 4, 2020 04:18PM - edited Feb 4, 2020 05:14PM by rtucker

rtucker wrote:

Hello,


I was diagnosed about a year ago with classic LCIS at the age of 58. There a suspicious area on my right mammogram which was architectural distortion. Had two biopsy's one with radiology and a lumpectomy to clean the LCIS area out with the surgeon. The area in question was clean but my LCIS was found on the biopsies.


I did get a second opinion and the Nurse Practioner wants me to start with a MRI and then six months later for a mammogram. My surgeon from before felt it was a double edge sword with MRI. Originally when I first had a mri couldn't tell if it was cancer or a radial scar. Going in April for another MRI which my breast center wants me to do instead of a ultrasound which I had in December which was clean including the mammogram. It's kind of scary because my NP gave me a number of 60 percent of a life time since I have dense breasts. I am currently taking aromosin exemestane under my oncologist. I am seeing a genetic counselor because I am a Jewish Ashkenazi but I just make the cut for testing but know one in my family has breast or ovarian cancer. I do get polyps so I am on the three year plan which isn't fun. Colon cancer doesn't run in my family which is family history question from genetic counseling.

Any good feedback should I have the testing done.

Thanks,

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Feb 4, 2020 08:57PM Lea7777 wrote:

You are doing everything you should, but sorry you're in this situation to begin with. The Tyrer Cuzick IBIS assessment model, that is most typically used to determine lifetime risk when LCIS or other typia is present, generates a very high risk. Every "breast professional" (over 7) I have consulted has told me it overstates the risk. But that 60% number may help get your MRI covered by insurance. Mayo is actually working on their own model risk assessment model that will hopefully be more accurate.

You'll have more info after your genetic testing and counseling. As you probably know, Aromosin cuts the bc risk by over 50% and continues reduce your risk even after the 5 (or more) year course has been completed.

Taking the meds, getting MRIs with the mammogram, getting genetic testing...you've got it covered. Is your mammogram the 3D Tomosynthesis, which is better for dense breasts?

Wishing you the best.

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Feb 5, 2020 06:13AM rtucker wrote:

Thank you Lea for your response. The mammogram is 3D at the Breast Center that I now go too now. The original radiologist picked up the distortion on 2D when this all started.

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Mar 5, 2020 03:28PM leaf wrote:

I had genetic testing done a few years ago, even though I didn't really qualify. I'm glad they did because they now know of gene mutations that are NOT BRCA 1/2. I get the idea that many of these 'newer' gene mutations do not produce as great a breast cancer disposition as BRCA 1 or 2. I would not like making the guidelines of who gets tested and who does not, because, of course there are people who have a small family tree, so there is a smaller 'sample size' - in other words, much less chance for a mutation to be detected by just looking at a family tree.

Gene testing is MUCH cheaper than it was,say, 10 or 15 years ago, and they can test for many more genes.

If your gene testing isn't covered by insurance, I'd sure want to know the potential financial charges beforehand, though.

Best,

leaf

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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Mar 5, 2020 04:51PM rtucker wrote:

Hi Leaf,


Thanks for your information about genetic testing. I just make the new guidelines for testing since I am an Jewish Ashkenazi and having LCIS. I know my insurance will probably cover probably 80% of the testing. Counseling and tesisn’t until June. More testing it feels like after a year it will never end. MRI coming up next month. Thanks rtucker

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Jul 24, 2020 10:05PM rtucker wrote:

Hi lee and leaf,


Had another MRI everything was clean margins for LCIS.

My genetic testing for 32 panels came back all negative thank goodness.

Just hope everyone is staying healthy.


Best,


Robin

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Jul 25, 2020 04:17PM leaf wrote:

Thank goodness your genetic testing for 32 panels came back positive!

Nothing is really good for detecting LCIS, except by looking at a piece of tissue under the microscope. LCIS is only definitely diagnosed by looking at a piece of tissue under the microscope. Don't be worried about that though, because many women have multiple spots of LCIS in a breast and it is often bilateral (in both breasts). They know this because they used to routinely do bilateral mastectomies on women before, say, the mid-1990s, and they could section the mastectomy specimens and look at the slices under the microscope. If a woman with LCIS goes on to later get breast cancer, the cancer is often in a place in the breast, or, less likely, the other breast, that by all other imaging looked normal previously. I was initially diagnosed with LCIS in one breast, and about 10 years later, they found more LCIS in the other breast. But my breast cancer risk may be just as high if I only had one LCIS spot in one breast.

LCIS is an uncommon condition, and its really difficult to do studies to find out how LCIS confers breast cancer risk. To make sure you have a spot of LCIS, you have to remove the spot and look at it under the microscope. So, since you removed that spot of tissue, even if you left some LCIS in the breast, you have disturbed that spot which could very well change how that LCIS spot responds. You can't study it to see what a spot of LCIS does over time. Sometimes it is thought some LCIS does evolve into ILC (sometimes a spot of LCIS is genetically related to a nearby spot of ILC), but sometimes LCIS women go on to get IDC or another invasive breast cancer.

Know the numbers they give you about your risk of breast cancer are VERY inaccurate. They don't have information about LCIS women in particular, because there are way too few of them. But even for the ordinary, normal woman who has never had breast cancer and doesn't have a family history of breast cancer (which would be most women), the breast cancer risk models are not very helpful at all for you as a person.

They can know pretty well how many women in a large population will get breast cancer, but the models we have are horrible for predicting whether one particular woman will get breast cancer or not, perhaps with the exception of women with a BRCA1 and/or 2 mutation. https://academic.oup.com/jnci/article/98/23/1673/2...

The highest lifetime risk I was given was almost 90% in a model that was NOT peer reviewed, and the lowest risk I was given was by a person in a tertiary care center who said my risk was 'somewhere between 10% and (?40%); I'd have to go to the literature to see more.' Well, I had done literature searches, and there was nothing more. That's a pretty big range between 10% and 90%. (Not to mention that 10% is below the lifetime risk of the 'average' woman in the USA.)

Many studies conflict, or partly conflict. For example, this recent study found a correlation with breast density https://www.ncbi.nlm.nih.gov/pmc/articles/PMC61430..., but this older study found breast density did not significantly increase the accuracy for one specific woman. https://academic.oup.com/jnci/article/98/23/1673/2...

As far as I know, there have certainly not been studies that focus on the future risk of breast cancer INDIVIDUALS who have LCIS. But, for plain, ordinary LCIS, probably as a group, probably less than 50% will eventually get breast cancer. And most women who do get breast cancer do survive breast cancer. Even my grandmother, who got breast cancer in the early 1950s survived breast cancer. (This was definitely before chemotherapy, and she probably didn't get radiation either.)

Now that I'm about 15 years out of my initial LCIS diagnosis, there are certainly months and maybe years that go by and I don't think of LCIS. (I do have other, more risky and unusual conditions.) But it took a number of years to get to where I am today.

Best,

leaf

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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Jul 28, 2020 04:18PM Lea7777 wrote:

And the best plus good health to you, Robin!

For women in the first weeks and months after their diagnosis, I think this is comforting from Leaf's post above, "Now that I'm about 15 years out of my initial LCIS diagnosis, there are certainly months and maybe years that go by and I don't think of LCIS. (I do have other, more risky and unusual conditions.) But it took a number of years to get to where I am today."

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