LCIS and 67% risk of invasive breast cancer

SassyMutt

I've lurked on these message boards the past few months as I've gone through a biopsy and lumpectomy for LCIS. Finally decided to join as I know there is so much more to learn. I'm grateful there is a place like this to turn to! Thank you in advance for listening.

I was recently diagnosed with LCIS and atypia after a biopsy for calcification found on my very first mammogram. Lumpectomy confirmed LCIS, but thankfully no cancer.

For others with LCIS, have you had your risk % calculated? And do you know the name of the calculation model used? Apparently there is only one that is applicable to LCIS. My doc told me, but I didn't write it down and now I can't find it when searching (I have a call back into my doc). My concern is my doctor has calculated my risk at 67% lifetime risk for invasive breast cancer which is so much higher than everything I've read for LCIS (everything I read was more like 20-30%).

I don't have a family history of breast cancer aside from one cousin. I'm 40 years old and have never had children, which I know increases my risk. My LCIS was considered “grade 2". So, it sound like a variety of factors are contributing, but I was surprised to hear it's that high.

I'm trying to research and understand all my options for managing LCIS with 67% risk. I'm tempted to try Tamoxifen and go through the MRI in March and see what happens. Although, I've also been that because told MRIs are so sensitive, they pretty much flag anything and can result in a lot of extra biopsies. And I've read lots of stories of women feeling like pin cushions and opting instead for mastectomies.

Prior to calculating my risk %, the docs have told me no need to discuss prophylactic mastectomies, but given the 67% risk level, I'm wondering if that should at least be on the table?

Any advice or guidance from those with LCIS diagnosis would be welcome and appreciated.

Thank you!

farmerlucy

Sassy - Is the doctor you are refering to a Genetic Counselor? My GC was an MD as well. In the letter to my BS he said he calculated my risk around your level, but he felt like the model was a bit high, and he settled on 50% based on my scary family history, ALH, and ADH. The MRIs aren't too bad, and I never had a false positive. I was 51 when they found the ALH and ADH. After twenty years of high risk screening I had long decided if anything came up I'd have a PBM. I felt like finding the ALH and ADH was a gift. My goal was to prevent BC not catch it early. Unfortunately for me and my unusual case it didn't work out that way, but it was still a gift. To me forty sounds really young to be dealing with this and a 67% risk is not too far off the brca pos ladies. I am surprised they aren't highly suggesting the PBM. Good luck. I know it is unnerving. If I can help with anything please let me know.

farmerlucy

Oh and one more interesting thing I learned on these boards. The use of Tamoxifen can decrease your breast density. Who knew?

SassyMutt

Thank you so much, farmerlucy! I really appreciate the response and information. It was my breast surgeon who calculated the risk, not a GC. I'm very interested in talking to a GC and need to look into it. The surgeon said unfortunately insurance won't cover GC because I haven't been diagnosed with cancer. But, I'm thinking it might be worth paying out of pocket if I have to in order to have all the information possible.

I'm meeting with the oncologist next month to further discuss my risk and possible Tamoxifen. I feel like I really want to better pin down my risk and ensure I understand it because if it truly is that high, than I feel like I seriously should consider PBM. I'm reading through all these forums -- so much information!

I'm sorry the prevention route didn't turn out as you'd hoped, but I'm glad you caught it in order to beat it! I'm a bit overwhelmed trying to navigate it all, but I see it as a gift in a way too.....if they hadn't found the LCIS I wouldn't know I was at higher risk and could have missed something critical in the future.

Moderators

Dear SassyMutt, welcome as an active BCO forum member. You will gain so much more by interacting with posts than just reading as answers are so specific to the questions you need answers to.

While lurking, you probably searched the main site, but in case you haven't there are lots of articles such as LCIS — Lobular Carcinoma In Situ to read to widen your knowledge to make better informed decisions for you.

All the best

The Mods

MsVeryDenseBreasts

FYI, Tamoxifen "may" reduce your breast tissue density, but it's not a given. If you have very dense tissue and little fat, it may not have any effect. Speaking from experience, you can possibly "feel" less dense and lumpy as you age but that doesn't necessarily mean that mammo screening will be easier because tissue density is determined at a cellular level. Tamoxifen also does not prevent your body from forming micro calcs that can cluster and generate the need for more biopsies. Per my surgeon they don't know what causes the micro calcs. Just FYI....it seems nothing is definite about all this and circumstances continue to vary widely based on individual characteristics. We humans are evidently biologically very complicated!!

april485

My understanding is that microcalcs are formed when cells die off and leave calcium behind (like a gift..lol) and when they cluster together, this usually justifies a biopsy as this means they are likely malignant and multiplying quicker than normal and forming a lump or tumor (but usually haven't gotten that far with DCIS diagnosis being very early) but when calcifications are widespread throughout the entire breast, they are just dead cell calcium deposits and not a malignancy or a cause for biopsy. HTH!

 

Below is an excerpt from the website "Radiology Assistant"

Intraductal calcifications
These calcifications are calcified cellular debris or secretions within the intraductal lumen.
The uneven calcification of the cellular debris explains the fragmentation and irregular contours of the calcifications.
These calcifications are extremely variable in size, density and form (i.e. pleomorphic from the Greek pleion 'more' and morphe 'form').
Sometimes they form a complete cast of the ductal lumen.
This explains why they often have a fine linear or branching form and distribution.
Intraductal calcifications are suspicious of malignancy and are classified as BI-RADS 4 or 5.

TwinMomma2

When I was 29 I had a lumpectomy for a borderline Phyllodes tumor. A few months later there was an area of suspicion on the follow up mammo. I had another lumpectomy and was diagnosed with LCIS and ADH. After weighing my options with the oncologist I decided to take Tamoxifen. One of the things that she was adamant about was not having any more kids (I had 2 small children at the time). Well, I was only on the Tamoxifen for 2 years and yup I had to stop taking it because I was pregnant with twins.

I am 38 now and the process has begun again, after the discovery of a mass on the mammo I had last week. Based on the diagnostic mammo and the U/S it is Bi Rads 5. Tomorrow I see the breast surgeon and arrange for the biopsy.

At this point, even if it is benign, I am going to discuss mastectomy. I have spent the past 9 years waiting and watching and I just don't want to have to do it anymore.

farmerlucy

Oh crap TwinMomma2! That is just awful. I hate this stuff. Why can't it leave us alone? Fingers and toes crossed for a B9 finding. Please let us know how you are doing.

Anonymous

sassy--I posted to you, but lost it.

We all have various risk factors that increase or decrease our overall risk, but without a family history of bc in a primary relative or a BRCA positive test, 67% sounds like a rather high estimate. (even with my combined LCIS and my mom's ILC, they gave me a lifetime risk of 36.6%.) There really isn't any good risk assessment that works with LCIS, so they can't really give a completely accurate number to those of us with LCIS. (my first oncologist used the Gail model, and even said it was "just a guesstimate". My present oncologist confirmed no good risk assessment tool really for LCIS, but agreed with "about 35%". I would definitely take the opinion of an oncologist or a genetic counselor over the surgeon in this case. Be that as it may, 35% is still high, but I choose to continue with close surveillance and preventative meds. (which I've been doing for over 11 years now). Let us know what your oncologist recommends .

Anne

SassyMutt

Thanks so much for all the helpful replies, everyone!

TwinMomma2 -- so sorry to hear about the mass. My fingers and toes are crossed with farmerlucy for a B9 result! Please do keep us posted. {{hugs}}

I just talked to my surgeon on the phone. She confirmed that the 67% lifetime risk figure is bit over-inflated and it's hard to pin down given the lack of good calculation models for LCIS. She said she used the Tyrer-Cusick Model as none of the others are even applicable for those with LCIS -- as you indicated, Anne. I asked her if, given my high %, mastectomies should at least be on the table of options. She said it's an option, but we talked for a while and she really kept stressing that she feels that would be overdoing it and that the plan we have for me to talk to the oncologist about Tamoxifen and the extra screenings are the right path to go.

Still thinking and info-seeking..... I see the oncologist Dec 23rd to discuss Tamoxifen and my first MRI wouldn't be until March. So, I may try that path and see how it goes, knowing I could always revisit with a more aggressive prevention approach if I choose to later. It's just that "what if" that nags.....blah. I will ask the oncologist about GC as well.....

farmerlucy

Sounds like a great plan SassyMutt, Let us know how everything goes.

vlnrph

Sounds like SassyMutt is taking all the right steps in a logical manner. When talking with the genetic counselor, it would be interesting to dicuss your cousin's history: generally a person already diagnosed with cancer is the best one for initial testing. (Perhaps she could even go with you & arrange billing through her provider, if convenient). My only affected relative, until recently, was an aunt who had metastatic disease of unknown origin over a decade ago and died within the year making her situation influential in deciding my choice of follow-up. Perhaps she had undetected lobular invasion not seen on film mammogram...

Out of pocket panels offered by Ambry and other companies are not as expensive as they were in the past since the Myriad BRCA patents were set aside by the Supreme Court in 2013. More competition means lower prices. Once someone in a family is known to have a mutation, sometimes single site analysis for that specific defect is possible, making the cost even less.

Periodic MRI's are not too bad however the "sensitive but not specific" results can be a little frustrating. Especially if the radiologist orders a 6 month repeat which is denied by insurance! I won on appeal although they took several months to finally pay the hospital.

SassyMutt

vlnrph -- Thanks for the suggestion about my cousin. I contacted her last night and she was tested but does not have the BRCA mutation.

vlnrph

Glad to hear your cousin was able to clarify at least part of the hereditary concern for herself - there is more to consider than just BRCA abnormalities however. Depending on when her testing was done, rearrangement assays as well as broader panels of unusual or rare mutations are now available.

Given your youth, keep in mind that invasive CA diagnosed prior to age 50 is frequently thought to be associated with a genetic component. With smaller families these days, in addition to the fact that defects can come through a male parent, it's become a challenge to isolate and pin down all the factors based on history or "pedigree" (makes us sound like racehorses or kennel club champions!). Even if you personally don't have female offspring to consider, other relatives may benefit in the future from whatever discovery might be made.

In the mean time, estrogen blockade by tamoxifen is a good way to keep those nasty cells from causing extra trouble. Perhaps in a few years, there will be enough information out there that will help to make these decisions a little easier...