LCIS Diagnosis--What Do I do next?

Tenley,

I'm sorry to hear how troubling your situation is.  It's frightening to get a diagnosis of LCIS, but you should understand that most women with LCIS do not get breast cancer.  I got my LCIS diagnosis almost twenty years ago, and chose careful follow-up.  So far, so good.

I also changed my lifestyle.  Scientists know that certain behaviors reduce breast cancer risk and recurrence -- and I've tried them all.  I put the information together on a web site for anyone who is interested.  www.ReduceBreastCancerRisk.com.

It bears repeating:  I got my LCIS diagnosis almost twenty years ago.  Most women diagnosed with LCIS will never get breast cancer.

Best Wishes,

Carol   

LCIS is a scary diagnosis, but my initial reaction was pretty benign (no pun intended).  I didn't think it much of a problem at first and started taking Tamoxifen - which I did not tolerate well.  The close monitoring was a nuisance, but I truly didn't think I was in any imminent danger, even though my breast surgeon presented BPM as a treatment option.  He was careful to remain neutral on surgery and did not push me toward it at all.  I arrived there on my own after three years of a) calcifications and other changes on mammos; b) the "growing" or ropy feeling tissue in my left breast; c) having very dense breast tissue; d) my mom's double mastectomies due to breast cancer; e) my history of fibrocystic disease; f) multiple biopsies in my past; g) my own growing uneasiness about my condition - mostly because of my family history. 

 It ended up a tiny cancer was discovered when I did have the BPM this past summer, and my surgeon was relieved we had gone ahead with it.  My mom is undergoing genetic testing right now to help me decide if my own daughters need to be closely monitored.  She had her ovaries removed at 35, so her doctor believes she may have developed breast cancer much younger in her life without her hysterectomy.  She was 70 when she got cancer; I was 52 at my diagnosis.

Treatment for LCIS is highly individualized and very personal.  I would recommend the close monitoring and LOTS of research, as well as just being very in touch with your own body and whatever changes you have experienced in your breasts.  Even if this year is a starting point, keep on top of how things feel and be proactive from now on.  I don't think surgery is necessary for everyone - nor do I think fear has to be a necessary bi-product of this disease.

moogie--I was diagnosed with LCIS in Sept 2003. I just finished my 5 years of tamoxifen a few months ago, fortunately my SEs were minimal, mostly hot flashes. I'm still under high risk surveillance (and will be indefinitely) of digital mammos alternating with MRIs every 6 months, US as needed, and frequent breast exams. I'm planning on starting Evista soon for further prevention of invasive bc (my risk is further increased by family history--mom had ILC); I have early osteopenia, so it will help that situation as well. I've read it can cause hot flashes, muscle aches, and swelling of the hands and feet, but I've read posts from people that say they had no SEs at all.  I'm hoping I tolerate it at least as well as the tamox. Feel free to PM me if you'd like.

Anne

Kathy--I haven't heard of any time limits on Evista.  I've had the new script for a month and haven't filled it yet--don't know why I'm dragging my feet--I didn't with the tamoxifen. Guess I just don't really like the idea of another long term medication, but it sure beats the alternative. Evista and Tamox have been shown to be equal in preventing the invasive bc's  (but tamox also helps to prevent the non-invasive bc's DCIS and LCIS, which Evista doesn't), with Evista having less SEs---so I did fine with tamox, I should be fine with Evista.  My insurance has covered all my MRIs so far (perhaps since I also have family history--mom had ILC), so I will keep having them as long as they are paying for them. I haven't had to have any more biopsies, despite a couple little suspicious spots.

Anne

Curly--I was diagnosed with LCIS in Sept 2003.  I just finished my 5 years of tamoxifen a few months ago. Fortunately my SEs were mild and manageable, mostly hot flashes. LCIS is most often found to be multifocal, multicentric and bilateral--meaning it can be throughout both breasts. (but  having it in more than one area does not change your risk--it's still the same as it is if only found in one area.) To remove all of it they would have to do bilateral mastectomies, so margins aren't an issue. All my docs felt BPMs too drastic a choice for my situation, and I even have family history (mom had ILC).  So I chose high risk surveillance and tamox--digital mammos alternating every 6 months with MRIs and breast exams (by onc and gyn) on the opposite schedule, so essentially I'm "seen" by some method basically every 3 months. Some  people wouldn't feel comfortable living with the high risk that I do, but it's a very personal choice, one which we all have to make for ourselves ultimately.  Feel free to PM me with questions if you'd like. I've been living with this and dealing with the high risk for quite a long time now and doing just fine. I'll be starting on Evista soon for further prevention.

Anne

curly---pleomorphic LCIS is said to be somewhat more serious than "classic" (regular) LCIS; I think it may raise your risk slightly more. They sometimes do  immunohistochemical staining to differentiate it from DCIS, you may want to ask your doctor about it. In the article that Pam cited above, BPMs were not recommended by most physicians even when the LCIS was found to be  the pleomorphic type.

Anne

CurlyC  - One thing to keep in mind is that you don't need to make any decisions quickly w/ the dx of LCIS. It is not a problem today, only an indicator of possible problems tomorrow. Another suggestion is to make your decision and then not try to second guess yourself afterwards (certainly easier said than done). Best wishes. Take care. - Jean

My radiation oncologist said that I should have all the LCIS excised, and my surgeon said that she couldn't do that since it was probably everywhere.  There was some new research out of Beaumont hospital indicating that consideration should be given to excising the LCIS. I also had 4 mm IDC.  After a lot of thought, I decided on bilateral mastectomies, and they did find extensive LCIS.

bluejap----after I was diagnosed with LCIS by core biopsy, I had a wide excisional biopsy (lumpectomy) to make sure there was nothing more serious going on, such as DCIS or invasive bc. That was over 5 years ago and I am still doing fine.  I have high risk surveillance--digital mammos alternating with MRIs every 6 months--and just finished my 5 years of tamoxifen a few months ago, fortunately with only mild SEs. So they do need to  find out if anything else is in there along with the LCIS, but chances are good there isn't.  Praying you get good results soon. PM me if you'd like.

Anne

Some doctors have a bedside manner like an avalanche.  Some just will never get it.

LCIS is a strange condition. I had ZERO breast problems before my diagnosis 3 years ago at age 51.   The approximate incidence of LCIS in my age group is about  1:10,000.  They don't know how many women really do have LCIS because it usually doesn't show up until you get biopsied - most of the time its not visible by clinical exam, mammogram, or ultrasound.  So we don't know how many women are living their lives and don't know they have it.  It is often multifocal (have many different areas of it in one breast) , and often bilateral (occurs in both breasts.)  But even if its not, it puts both breasts at risk. (Yes, its a weird disease.)  Most people now believe that LCIS, in some small (unknown number) of cases may be a NON-obligate precursor for cancer.  This means in a small number of cases, LCIS cells MAY become cancer.  That says MAY, not WILL.

I had an excisional biopsy after my core biopsy, and my scar is about 1 inch long.  I have a small B cup.  I certainly can't see any difference where they took out tissue.  I know they went all over my breast, and I don't think they removed more than, say, 1-2 tablespoonfulls of tissue.  If you have very small breasts, then talk to your breast surgeon about appearance.

No, LCIS is not usually considered cancer, but it does put you at higher risk for breast cancer.

Even the excision may not be OBLIGATORY in some situations - at least some writers of some article have this opinion.  (See the thread http://community.breastcancer.org/forum/95/topic/702563?page=2#idx_34) 

Interestingly, Here is more data from the  Dec 2008  San Antonio conference http://www.breastcancer.org/risk/new_research/20081215.jsp which seems to suggest the women with the highest breast cancer risk were the women with atypia who had a WEAK family history (if I am reading this correctly.)

I've read papers that say about maybe 10-30% of people who have LCIS and nothing worse on core biopsy have something worse (DCIS or invasive) after excision.  Its an individual decision.  No one is REQUIRED to have any treatment whatsoever.  But you will need to live with your choices, whether they are the least invasive, or the most invasive.  When I had my excision, the situation was called 'LCIS on core biopsy, here to verify the diagnosis.'  Speaking only for myself, I could not have lived with the 10-30%possibility I had something worse and left in undetected. But some people do choose not to have it excised, and that is their valid choice.

Here's some more reading on this site. http://www.breastcancer.org/symptoms/new_research/111005.jsp , http://www.breastcancer.org/symptoms/types/lcis/cancer_risk.jsp

Probably the people who opt to only have screening  (no antihormonals either) are in the minority on this site.  That is probably NOT the population average.  Most people who stick around have some uncertainty or issue going on.  So if you count the number of posters that have this or that happen to them are probably not representative of the general population.

Before, say 1990, they used to routinely do bilateral prophylactic mastecmies on LCIS women because they didn't know the natural history of the disease.  They thought it was like DCIS. When they found out they could do lumpectomy for many early cases of invasive cancer, most breast surgeons thought it was overkill to do mastectomies on women with LCIS and nothing worse.  My breast surgeon refuses to do mastectomies on me (I have a weak family history and LCIS), but there are other LCIS women who have posted here and their breast surgeon recommended bilateral mastectomies.

LCIS is full of uncertainty.  Even the name is controversial; certainly the treatment is controversial.  That's why you usually get options to do whatever is best for YOU.

I had my diagnosis of LCIS after a core biopsy that indicated LCIS with calcifications and comedo necrosis--that REALLY worried them as comedo necrosis usually pressents with DCIS-- They wanted to do an excisional biopsy and I didn't understand why --it was LCIS, and it isn't cancer...but the surgeon wanted to be sure that no DCIS or ILC or anything else was "laying right next to the tissue from the core biopsy." That made total sense to me and the excision was a breeze compared to that core biopsy. My incision is nearly 4" long, in the fold under my breast, and it's healing well. It really wasn't very painful. The biggest pain was wearing a bra to bed for a few weeks. They took 5.5cm x 2.5cm X 2.0cm...a big sample. It loss of tissue was more noticeable right after surgery, and I was a bit freaked out at first, but now it has settled in, or something. When I look in the mirror, you can barely tell the difference in my breasts (5 weeks later). So give it time.

After the excision, the biopsy report was "extensive LCIS, no invasion, no mass, no comedo necrosis." So, I am an unusual case where they found nothing more, but I feel much better about it all. The doc feels that if there was any cancer in that breast it would have been found in that large a sample--that doesn't however say that I have nothing in the other breast, so we will be vigilant--maybe an MRI at some point. For now I'm happy to be starting Evista in a month and a little time, I feel, will lead me to the right decion down the road.

The reason they even suggest PBM is that some people just can't live with the worry and wondering when the cancer will show up, if at all. If it's right for you, you'' know it. And if I have to have multiple biopsies or some scares, I may be at that point, too, in time, but for now I'm content to try a risk reducing med and see what technology has to offer in 5 years. Hang in there!

Kathy

Bluejap,

It sounds like a second opinion might help.  Some other breast surgeon might be able to reassure you that he or she has a way of doing the excision that would not have noticeable effects.

I think a lot is made of having LCIS because the medical community wants to prevent cancer when they can.  Because women with LCIS are at increased risk for breast cancer, they want to do what they can to try to reduce that risk.  And they don't want to be blamed for not doing enough if a woman does develop invasive breast cancer.

But most women who get LCIS do not get invasive breast cancer.  I was diagnosed with it around twenty years ago, opted for careful follow-up, and am still fine.  I also did what I could to reduce my risk for breast cancer through lifestyle.  I've put what scientists know about reducing breast cancer risk and recurrence on a web site, www.ReduceBreastCancerRisk.com.

Best of luck to you and to all who come to this forum.

Carol

Tina - Sounds like some very wise words. Thanks for sharing! Did they need to do a bx of your nodes? Is that why you have lympedema? I don't have that problem at all, but my PS said that I wouldn't since I didn't have any node involvement. Just wondering. Thanks. - Jean

I had LCIS in L along with radial scar intraductal hyperplasia and sclerosing adenosis.  I have lump/s in the R now, and am terrified of this, and find myself so preoccupied/concerned with it.  I stress over it constantly. I'm having an MRI next week.  ckslow4, thanks for posting some of your experience and recent happenings. Good luck to you with everything. Take Care. 

Jean, What made you decide to do Mastectomy?