DCIS & LCIS what do I do?

I don't know that much about DCIS, but the usual choices for DCIS, as you probably know, are (lumpectomy + radiation) or mastectomy.  The usual treaments for LCIS are watchful waiting, watchful waiting with antihormonals, or (usually only if you have a severe family history) PBM.

I don't know the usual hormone status of DCIS, but most LCIS is ER and/or PR positive.   So normally antihormonals are an option for LCIS.

They will be wanting to remove the DCIS, either by lumpectomy or mastectomy.  They don't/won't be able to remove all the LCIS, for one because they won't be able to tell where you have it - LCIS is often multifocal and bilateral.  But that's somewhat of a moot point, because LCIS (alone) even if you have one tiny spot puts BOTH breasts at risk. The papers I have read are not consistent whether LCIS + invasive puts you at higher risk of bc or recurrance than if you had invasive alone.

Some people have all the choices possible, and others have fewer.  For example, if you had very small breasts, even a small lumpectomy may really alter the shape of your breasts.  That may or may not be of importance to you.  If you have a mastectomy, you will probably lose sensation in the area.  If you have a lumpectomy, depending on the size and position, you are apt to lose less sensation.  If this is important to you, you need to discuss it with your surgeon.

You can look at the reconstruction forums, below, to check out reconstruction options, if you want that.

They usually treat things to the most severe level you have.  For example, if a woman had IDC and LCIS, they would treat the IDC.  I don't think there are rigid guidelines what to do about the less severe condition (the LCIS.)

Hi, Bee

I was dx with DCIS in August 2007 and underwent lumpectomy and radiation, finishing in Dec 2007. In August 2008 I was dx with LCIS in the other breast.  I chose lumpectomy again (Oct 08) and will be starting Tamoxifen in a week or so.

Treatment for DCIS depends on how much (single focus or all over), the size of the breast, where in the breast (could have to take out more tissue) and the grade. Oh, and your tolerance for risk.  Even though mine was grade 2, it wasn't large and the surgeon was able to get good margins & a very good cosmetic result.  The grade and the necrosis meant that radiation treatments would be in my best interest, so I had ~ 7 weeks worth. 

Some women get mastectomies - single or a double (one being prophylactic). In that case, rads wouldn't be recommended.

Chances are LCIS is in both of my breasts, but it wasn't in the tissue removed in '07. It is usually an incidental finding - that is, they go looking for something else - like DCIS - and find LCIS and maybe ALH or ADH as well.  The DCIS is cancer, so like Anne says, its diagnosis 'trumps' the LCIS, which is only considered a marker for possibly getting invasive BC.

Depending on your surgeon, s/he may remove more tissue when excising the DCIS in order to get more of the LCIS. Getting margins clear of LCIS can be difficult, and re-excising for LCIS isn't often done.  

Radiation treatments typically reduce your risk of recurrence (DCIS) by half and Tamoxifen by half again. The only anti-hormonal used in DCIS is Tamoxifen whether or not your pre-menopausal or post-menopausal. It also helps in cutting your risk of invasive due to the LCIS.

You'll want to ask your surgeon how they'll treat margins if LCIS is still present. If you opt for lumpectomy, getting the ER/PR testing result sooner is especially important - if it is ER-/PR-, you wouldn't be able to take Tamoxifen, so depending on your dx, it might mean defnitely rads or you'd opt for mastectomy (again, it all depends on how much risk you can tolerate). Your oncologist should be able to help you assess your risk, which may help you decide which treatment. I found an oncologist this year who specialized in BC and has a particular interest in risk - it made a big difference in how I decided to go through treatment.

There is the DCIS discussion right above this one. Lots of women with different diagnoses and treatment decisions. Come on up and ask a question or two.

Take care. Hard stuff and lots to take in.

Pam

They did ER/PR testing on my excised tissue to help determine if Evista or Tamox would be beneficial...no need to block estrogen or progesterone if there are no or low # of receptors. From what I understand, no excision for clear margins is necessary with LCIS...because it isn't cancer, like you say, and is usually throughout the breast tissue. (MIne said "extensive")

Kathy

Abbie--generally they do test for ER/PR with LCIS--they didn't with mine for some reason, but they recommended I take tamox anyway since most LCIS is found to be estrogen positive. I just finished my 5 years of tamox and tolerated it pretty well with mild SEs, mainly hot flashes. Getting clear margins is not an issue with LCIS.  LCIS is generally multifocal, multicentric and bilateral, which means it could be everywhere, so  getting clear margins wouldn't guarantee that you "got it all"--to remove it all you would have to have bilateral mastectomies, which isn't medically necessary as it is non-invasive. (but some women do make that choice as living with high risk is very challenging)--it's a very personal decision, one  we each have to make for ourselves.

Anne