lumpectomy- lobular carcinoma in situ

sokmonky

my 24 daughter underwent a lumpectomy last friday for what we hoped was, a simple fibroadenoma.

it was 3.2 cm, removed, with clear margins.

pathology came back as lobular carcinoma in situ.

we are getting different opinions as to what, if any, further procedures/monitoring needs to be done.

would appreciate any advise.

covertanjou

Hi Sokmonky,

First let me say how sorry I am that your daughter was dx with this.  You have come to a great place to get info and support. 

Lobular carcinoma in situ (LCIS) is NOT  cancer, but its presence means that there is a small increase in the risk of developing breast cancer later in life. Even so, most women with LCIS do not develop breast cancer.  

Here are some websites you can look up for some info:

http://cancer.stanford.edu/breastcancer/lcis.html

http://www.breastcancer.org/symptoms/types/lcis/ 

http://www.mayoclinic.com/health/lobular-carcinoma-in-situ/ds00982 

The treatment for LCIS varies.  Is your daughter being followed by a Breast Surgeon?  

Anonymous

I'm sorry to hear your daughter has to deal with this at such a young age. I was diagnosed with LCIS 6 years ago at age 46.  I was given 3 options: 1) close monitoring 2) tamoxifen and close monitoring 3) BPMs. Even with family history of bc, all my doctors felt BPMs too drastic a choice for my situation. I chose to take tamoxifen; I finished my 5 years of it last fall. I am still on high risk surveillance of alternating MRIs with mammos every 6 months and breast exams on the opposite 6 months. And now  I take Evista for further preventative measures (since I'm now post menopausal). I would strongly suggest your daughter discuss all the risks and benefits of the different options with her oncologist, as her situation  is very different from mine due to her young age. ( I was all done having children and nearing natural menopause, which influenced my decisions a lot). The main thing is that there is no rush with LCIS, since it is non-invasive, so she has time to do research, ask lots of questions, and get 2nd opinions if she chooses. (which I would encourage). Feel free to PM me if you'd like.

Anne

sokmonky

Thanks for the info.

I spoke to her breast health navigator yesterday and she advised referral to breast surgeon was not necessary as the treatment, i.e. excision, has been completed.

My daughter is meeting with the surgeon who performed the lumpectomy next week.

What questions should we ask him?

Thanks in advance for your input.

sokmonky

Thanks for your advice.

Did you tolerate the tamoxifen well?

Who would you recommend for a second opinion? Her breast health navigator advised she could arrange an appt. w/ an oncology pathologist, I believe was the specialty she mentioned.

She is being followed by Roper St. Francis in Charleston, SC. I was told they had the best breast mri in the state. 

leaf

Welcome to our LCIS group!  Feel free to invite your daughter here!

Almost everything about LCIS is controversial, from the name it is called, the estimate of breast cancer risk, and the appropriate treatment or surveillance.

Different breast surgeons and oncologists have different views.

One thing she may want to ask the surgeon is whether or not she should be referred to genetic counseling. The best genetic counseling is done by board certified genetic counselors.  This is usually done at major institutions. If she has NO breast or ovarian cancer going back to grandparents, including aunts, uncles, sisters, brothers,neices, nephews, then she probably won't be referred for genetic counseling.  Genetic counseling does NOT mean you will be genetically tested. Counseling is just giving you more information.   *IF* she does choose to get genetically tested, and *IF* she turns out to be BRCA positive, that might influence the choices she may want to make in treatment.  The usual estimate of risk of breast cancer for BRCA women is quite a bit higher than the risk for LCIS (and no/weak family history.) (About 10-20% of breast cancers are thought to be caused by single gene mutations such as in the BRCA gene, or other genes.)

Different institutions follow LCIS patients differently. (This is one of many areas of controversy.)  At the major institution I went to, they follow LCIS patients with yearly mammograms, and twice yearly clinical exam (i.e. a manual breast exam).  They offer tamoxifen.  They do not offer MRIs for routine screening.

I opted for tamoxifen, and am going on my 3rd year of it.  I have tolerated the tamoxifen well, with minor hot flashes.  I've had several bouts of endometrial polyps, but they have all been benign.  (Tamoxifen acts like an estrogen *for the uterus*, though it acts as an anti-estrogen for the breast.)   But everyone is different with tamoxifen.  Some people have very few if any adverse effects, and some people can't tolerate it at all.

Some breast surgeons are encouraging their LCIS patients to have bilateral mastectomies, and other breast surgeons do not recommend that at all.  This NCI website gives you some idea about their take on LCIS. http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

I can't stand my breast surgeon, so I get followed by my oncologist.

 As Anne said, there is no rush to make a decision.