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Topic: Has anyone chose no meds or no BMX for LCIS?

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

Posted on: Apr 20, 2019 12:10PM

Ja9831 wrote:

Hey ladies,

I was just diagnosed with LCIS two days ago. I have a family history of bc mom died at 53 and grandmother has it as well. I’m trying to wrap my head around this whole thing. My dr is leaving the decision up to me as to what I want to do. Everything on LCIS is so confusing, so many conflicting reports on this I feel dizzy sometimes reading it. I understand it’s not cancer. But the tug of war of should it be or shouldn’t it be precancer. I keep reading that it most likely will never be any type of cancer. I just had an intraductal papilloma removed that’s how this was found. And I was told that that could in the future turn to cancer so it has to come out. Ok so I took it out. But LCIS it seems up played on hand and down played on the other. Don’t say it most likely will never turn into invasive cancer and then call it a marker and say it’s somewhat high risk. But let’s offer the patients meds that apparently suck! And give an option for DMX if they choose. “My god pick one” I read one article and I’m like ok I got it I understand. Then I read another and im like “what”. Just dizzy I am with all this crap. Has anyone just said I’m not going to do anything meaning meds or even bmx?

Dx 4/8/2019, LCIS, Left
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Apr 20, 2019 01:01PM Mavericksmom wrote:

Hi Ja9831, I was diagnosed with ILC in Dec. Had left mastectomy with DIEP reconstruction in January 2019.( I had IDC in same breast in 2003, lumpectomy, re-excision, radiation and chemo, I refused Tamoxifen.)

I was treated this time at a cancer hospital and I asked for a double mastectomy and was refused!  Their words "we won't remove a healthy breast!"  

I refused the aromatase inhibitor this time for reasons that only apply to me, but to your point, there are choices!

I hope by bumping your post up you will get responses from people who actually had LCIS.

Good luck with whatever you do, but don't let the doctors rush you into a decision. Maybe get a second opinion?


Dx 6/6/2003, IDC, Left, 1cm, Stage IA, Grade 1, 0/24 nodes, ER+/PR+ Dx 12/4/2018, ILC, Left, 1cm, Grade 2, ER+/PR+, HER2- (FISH)
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Apr 20, 2019 03:59PM MelissaDallas wrote:

My guess is most women don’t do meds or MX. I have seen discussions of medical professionals about frustration with the low percentage of women who choose to take the meds, even though it reduces risk considerably.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Apr 21, 2019 07:06AM BevJen wrote:

I was diagnosed with LCIS in 1991. No one really knew what to do with me. I saw several doctors, sent my slides all over the country for opinions, etc. There was no consensus. Of course, we knew a lot less about breast cancer at that time. Tamoxifen trials were just going on for high risk patients and I was urged by an NCI-affiliated hospital to go on tamoxifen for several years to avoid any further issues. After reviewing all of the then-available material, I pulled out of the trial before starting the meds. Fast forward to 2003 -- I was diagnosed with invasive lobular cancer. My breast surgeon, who was the best in the area at the time, said something like: well, you won the lottery. The odds simply fell out against you. Her comment at that time was that with LCIS, you have a 25% chance of eventually developing invasive lobular cancer. That was me. I had no family history of breast cancer.

I can't tell you what to do, but I can tell you that if it was me, today, I would probably have taken the tamoxifen to increase my chances of never developing invasive breast cancer. In 2003, I had a bilateral mastectomy, ACT chemo, radiation, and I ended up on tamoxifen for two and a half years before having a recurrence to a polyp on my cervix (weirdly found during a routine gynecological exam.) I had a complete hysterectomy and have been on letrozole since 2006. I may or may not be having a progression now -- still to be determined; nothing has shown up on scans yet.

Considering my history, you might want to consider treatment at this time. This is the gift that keeps on giving.

Dx 11/2003, ILC, Left, Stage IIIC, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+ Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 8/1/2019 Ibrance (palbociclib) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Radiation Therapy Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Apr 21, 2019 08:46AM Northerngirl485 wrote:

I have made the choice ,at this point of time ,to not take medications or jump into a mastectomy. The research is very confusing, sometimes it seems straight forward and sometimes I think the people writing the articles do not have a clue what to say and it just comes across confusing. With either decision there maybe consequences. Have surgery and deal with possible complications, it is not as easy as cut them off and all is well. Take the meds and have a risk of developing another cancer and possibly dealing with the side effects of the medications.

I started this journey in October and it is hard to believe it's been 6 months already. I started having pain and nipple discharge then but by the time I headed into surgery for the biopsy I wasn't diagnosed till January.I am glad I have taken some time to rationalize with myself. At first I was scared out of my mind and wanted everything. Now I can make better decisions not based in “fear". My treatment plan can change at any point in time, which leaves these choices up to me and my medical team. I think everyone has their own history behind their diagnosis and a could have and should have approach. There are many ladies on here who haven't done anything (no meds no mastectomy)and are fine with no further development, but there are ladies who went on to develop more serious forms of breast cancer. All I can hope for is my choice is the best one for now and go with that, basing my treatments on my 6 month checks

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Apr 21, 2019 07:20PM jessie123 wrote:

Would a lumpectomy work to remove it? A lumpectomy is really easy. My path report showed I not only had ILC ( which we knew) but also LCIS. I haven't thought to ask the surgeon if she got all of the LCIS -- just assumed they did. Need to add that question to my list for the next surgeon visit.

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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Apr 22, 2019 07:25PM leaf wrote:

Unfortunately a lumpectomy will not work to remove all of the LCIS. That's because even if they get clean margins around the known area of LCIS, they can't reliably tell where any other spots of LCIS are located. LCIS is normally multifocal (meaning there are multiple spots of LCIS in a breast) and often bilateral (meaning in both breasts.) They know this because before about 1990, the routine treatment of LCIS was bilateral mastectomies, and they could look at the mastectomy specimens. The only way they have of definitely diagnosing LCIS is by looking at a tissue sample under the microscope. Usually LCIS is an incidental finding, at or near a spot that looked or felt suspicious.

Even if they could remove all the LCIS (which they can't), that may not decrease one's breast cancer risk. That's because sometimes (the number varies from study to study, but something like 20-80% of the time - numbers taken off the top of my head) - when a woman with known LCIS goes on to get invasive breast cancer, the invasive breast cancer is at a place that had no known abnormalities. When LCIS and an invasive breast cancer occur nearby, something like roughly ?30% ?50% of the time the LCIS and invasive breast cancer are clonally related - meaning the LCIS may have become invasive cancer. The other roughly half of the time, the LCIS is NOT genetically related to the invasive breast cancer.

So they don't know what makes LCIS a risk factor for breast cancer. It may be more than one thing.

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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Apr 27, 2019 01:19PM - edited Apr 27, 2019 01:35PM by Lea7777

Has anyone just said I'm not going to do anything meaning meds or even bmx?

pr 20, 2019 03:59PM MelissaDallas wrote: My guess is most women don't do meds or MX. I have seen discussions of medical professionals about frustration with the low percentage of women who choose to take the meds, even though it reduces risk considerably.

Ditto, from my perspective--so in answer to your question--Yes.

You may want to try the drugs to see if they suck for you. Maybe they won't. If one does, you can halt it and can try the next, and so on. Depending on your age, there are 5 drug options. If they all are intolerable, then you know you've given the meds a shot. You may also want more frequent breast surveillance, which usually is suggested.

I can tell you the 3 breast surgeons I have spoken with, along with a consultation at one of the premier medical research and cancer treatments centers in North America, all stood firmly against a prophylactic bilateral mastectomy for LCIS, even when coupled with other atypia.

Your confusion is a logical and natural reaction to what is out there and what is lacking.

Good luck to you, Ja9831.

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