Just diagnosed with LCIS

Kristie-----no wonder you're confused---there is ongoing controversy in the medical community regarding LCIS--what it should be called, what it truly is, how it should be managed, etc.... (many view it as just a marker for high risk of invasive bc in the future, while others view it as bc as it is technically a  stage 0, non-invasive in-situ bc.) The 3 standard options usually given are : 1) close monitoring 2) close monitoring with tamoxifen (or evista depending on menopausal status) 3) BPMs I was diagnosed with LCIS 6 years ago and went with option #2---I finished my 5 years of tamoxifen last year and now take Evista (since I'm postmenopausal now) for further preventative measures, and I continue with high risk surveillance of alternating MRIs with mammos every 6 months and breast exams on the opposite 6 months.  The oncologist will go over all your risk factors and try to figure out your estimated 5 year and lifetime risks--(I say try, because with LCIS they are really not exactly sure); they can also discuss all  the risks and benefits of taking tamox  or evista with you, and set up a plan for monitoring, if that is the route you choose to go. My oncologist does a breast exam every time, takes blood for tumor markers, goes over any SEs that I might be having (fortunately I tolerated tamox well and am doing well on evista), and orders any tests that are needed. Feel free to PM me if you'd like to chat.

anne

Be careful  with terminology as you wander in this subject: a few places/people consider hormonal therapy 'chemotherapy'.   Most do not.  But it can get confusing.

IV chemotherapy (i.e. antimetabolite/anti-Herceptin therapy) is NOT considered appropriate for LCIS and nothing worse. Normally radiation is not done, but we have 1 sister here who got radiation for LCIS and nothing worse.

The National Cancer Institute considers the term 'LCIS' as misleading.  That's because LCIS was identified BEFORE they knew the natural history (i.e. how many LCIS women got bc.)  Risk estimates for LCIS are complex, because before the 1990s, it was fairly routine to treat LCIS with bilateral mastectomies.http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

Different docs have different feelings about LCIS. On my first visit to my breast surgeon, before she even asked about my family history, she said, "If you are interested in PBMs, I will fall over in my chair."  I had an excision, but she refuses to consider PBMs on me.

I am probably among the least monitored among the LCIS women I've seen in this forum.  I get clinical exams twice a year, and annual mammograms.  I'm on tamoxifen.  I just want you to be prepared, because different doctors apparently have very different ideas about LCIS.  There is little in LCIS that is NOT controversial.

RE: fertility: Tamoxifen is contraindicated during pregnancy.  

Recently developed ovarian stimulation protocols with aromatase inhibitor letrozole and tamoxifen appear to provide a safe stimulation with endogenous estrogen levels comparable with those achieved in the natural cycle.http://www.ncbi.nlm.nih.gov/pubmed/19806518

Many of these patients will use adjuvant endocrine therapy. This treatment has no direct impact on their fertility, but postpones a possible pregnancy, since pregnancy is contra-indicated during Tamoxifen treatment.http://www.ncbi.nlm.nih.gov/pubmed/18411579

I am not an expert on this;  I don't know how representative these papers are. You really need to talk to your doc, and probably go to a high risk clinic, probably at a large institution. Research yourself, and come to an informed decision.   You may also want to ask on the Young Women with bc forum.

 Many papers estimate the incidence of breast cancer in (LCIS and nothing worse) patients is about 0.5-1% per year, so most women have some time to decide.

Hi Leaf!

I read so many of your posts as they are so interesting and near to my heart.  I think we are taking the same path with LCIS- I kind of felt that my breast surgeon was under-monitoring me, but it seems your's said the same.  I had the excisional for DCIS and now LCIS remains- went on Tamoxifin about 4 months ago and will have my next mammo in September- no sooner unless needed.  My doctor doesn't feel MRIs are necessary unless something new arises.  I really felt I should be monitored more closely, but I truly love my surgeon and will go with what she feels is right... which seems to be what your doctor said as well- that makes me feel better.  Do you happen to be from the NY area?  That would be strange if it was the same doctor!

Take care, Leaf.

Hi Kristie,

Please give me a call would love to talk to you. 914-391-6764

christine

Hi Kristie,

I am 53 and recently diagnosed with ADH via core biopsy, then LCIS with the bigger open biopsy.  My surgeon explained my options in this order: losing weight (40 lbs in my case), she felt would reduce my excess estrogen by almost the same amount as taking Tamoxifen--but one or the other was strongly recommend.  My breast surgeon presented the BLM idea, but passed over it quickly when I gasped and said OMG! The assumption is that my LCIS is estrogen driven.

 So, I got a second opinion from and oncologist in Chicago--looked at slides again--and said, "I would recommend Raloxifene instead--fewer negative side effects (still blood clot risk increases) and some very good positive side effects--treat your osteoporosis, lower your cholesterol.

The thought of bilateral mastectomy for LCIS--not even cancer--seemed like a "fast fix" that I would regret.  Since my biopsy was quite drastic, with plenty of bleeding and internal scaring as the few nerves in the breast were cut (my ADH and LCIS right behind the nipple), I had mild pain for three months (better now that I learned about massage).  In my mind, only if I have to have repeated biopsies of that nature, would I consider BLM.  Mastectomy and reconstruction seems "violent" to me.  

Risk assessment

 No breast cancer on mom's side (I have no sisters).  Plenty of breast cancer on my dad's side: great grandmother, grandmother, 2 of 5 aunts on same dads side. Interestingly, one of the aunts that did not have cancer but considered high risk took part on the STAR tamoxifen study (took the drug for 5 years age 59-64. BTW, aunts all gained a lot of weight after having their children and all went into menopause 40-50 lbs over their ideal weight.  However,   No cancer yet for the aunt who was in the TAMO Star study, she's now 75.  

So, I decided to "do what the high risk aunt did"--take the drug, and today, Raloxifene (EVISTA) is considered as effective as Tamo with somewhat reduced risk. The stroke, blood clot risk scares me the most--so in the end, I would consider BLM rather than a stroke--but...for now.. I'm taking the Raloxifene and losing weight--Weight Watchers. 

Pray on your decision and read alot--quiz everyone in your family.

Good luck and God bless.

 MJM