DCIS/PLCIS/ALH - any help/advice appreciated

Grakenmom · September 2009

Grakenmom · September 2009

Hello all - short-time reader, first-time poster here. Here's my fast & furious history (sorry I'm not up to speed on all of the terminology, am kind of learning as I go)

-Biopsy 8/19 of 4mm "suspicious lesion" seen on u/s, not mammo. Biopsy path report shows: Invasive Ductal Carcinoma. Breast Specialist moving practice to another state, I find another highly-regarded surgeon in our city.

-Both-breast MRI and bone scan (for back pain) are negative. Lumpectomy for DCIS and sentinel node removal 8/31. Both nodes negative. Surgeon says all is well, should follow with radiation & Tamoxifen. Path report shows different story:

Lumpectomy diagnosis: "Invasive ductal carcinoma, SBR grade 1/3, approx 1.2 cm. DCIS, nuclear grade 2/3, solid and cribriform types with focal necrosis. Pleomorphic Lobular carcinoma-in-situ (LCIS). Atypical Lobular Hyperplasia (ALH), previous biopsy site change, stromal fibrosis, apocrine metaplasia and cystic change.

Left superior and posterior margins, excision: LCIS is focally present on the posterior margin of the specimen. LCIS not seen on the margins.

Left inferior and posterior margins, excision: PLCIS and ALH. PLCIS is present on inferior, medial and lateral margins of the specimen."

Had my 2 week follow up with surgeon yesterday - he had called & said he was VERY surprised by the path report, and is having a second reading (I did not at the time, understand why). He did not give much attention to PLCIS during our visit, it was only after I rec'd a copy of the path report that I started reading here about it last night.He told me that "the cancer is out" and you'll need to decide whether to do chemo/rad/hormones. (he is very kind, not brusque, but I'm wondering why he didn't fill me in on PLCIS).

So here's where my questions start: If we do a re-excision and end up with clear margins, does that put me in a continuous monitoring pattern forever, to wait to see if a more aggressive form of cancer shows? But PLCIS is only determined under microscopic exam, right? PLCIS doesn't reveal on u/s, MRI or mammograms, only cancer reveals?

Does chemo and/or radiation have any affect on PLCIS?

What is ALH, and how does it figure in?

If I have either a single or double mastectomy, would I still need to do chemo and/or radiation? Or does the mast drop my chances of recurrence/metastasis enough to forego those therapies?

When will my head quit spinning? Feel like I'm in a fog with the worst having to tell my youngest that he won't be able to join Boy Scouts, because we can't commit to the time/travel.

Sorry this is so long, but the little I've read on this forum, most of you know more than the doctors! Any help, information, or advice you care to provide is most appreciated. Thank you.

Grakenmom

Anonymous · September 2009

grakenmom----- the IDC "trumps" everything else that you have (DCIS/PLCIS/LCIS/ALH) as it is the most serious of everything you have since it is invasive. The treatment they are recommending (lumpectomy, radiation/chemo and tamoxifen) will be directed primarily at the IDC, and the DCIS. The remaining PLCIS/LCIS/ALH does not prevent you from having a lumpectomy (it does not have to be removed as it is non-invasive), but it does put both breasts at high risk for invasive bc in the future and does require very close monitoring. LCIS is not usually felt or seen on mammo/US/MRI, but generally found incidentally during biopsy/surgery for something else. Chemo/radiation are not given for LCIS as it is non-invasive, so I don't think they really know the specific effects it has on it (I'm not sure if any studies have been done or not). ALH is the step just before LCIS on the bc spectrum and is a precancerous condition. I'm sorry, I can't answer all your questions, personally I only have experience with LCIS (I was diagnosed 6 years ago with LCIS; had a lumpectomy, took tamoxifen for 5 years, and continue with high risk surviellance of mammos alternating with MRIs, now take Evista since I'm postmenopausal now); but my mom had lumpectomy/radiation/tamox for ILC and the good news is she is a survivor of over 22 years and still doing very well. Take it one step at a time--you'll feel more incontrol once you have a plan in place.

Anne

cbm · September 2009

Hello, Grakenmom. I don't think I'd do anything until I consulted the oncologist you are seeing for the follow up on the IDC. I had a lot of different things going on in my tumor and breast, although I elected a bilat mastectomy, it was my oncologist who told me the implications of each, long term, and how I would be followed. By the oncologist.

Because once you are on systemic care--chemo, hormones, they can coordinate your early detection system, whatever it is. Even if you didn't have those other things going on, you get followed more closely because you have a cancer diagnosis. So you will be in a monitoring pattern--this is a good thing! You are eligible for more frequent tests and can jump the line as needed.

If you have mastectomy, you might indeed be able to forego systemic treatment, that's something you and the oncologist could discuss. With no lymph nodes and a very small slow tumor (the SBR is Scharf Bloom Richardson score, 1 out of 3, it looks like, that's very good) you are in a good position to consider surgery only, I believe.

Was this surgeon a breast specialist? If not, you might call your former doc and see which oncologist he would have referred you to. Or, if you are thinking of having one or two mastectomies, you may want to have a breast surgeon who is accustomed to coordinating surgery with a plastic surgeon, who can do your reconstruction in the same event.

I hope this helps. I don't know much about LCIS or PLCIS but I think your instincts are good--you need someone with a systemic view of your future cancer risk, and that might be an oncology consult.

Warmest,

Cathy

leaf · September 2009

They don't know much about PLCIS treatment (see the PLCIS thread); PLCIS was only 'recognized' in the last decade or so. Many feel it should be treated more aggressively than classic LCIS, and treated more like DCIS (the usual treatments are lumpectomy + radiation or mastectomy.)

But, as awb said, your IDC 'trumps' your other diagnoses.

Classic LCIS is often multifocal and bilateral (happens is several different spots and often is in both breasts), so its usually impossible to know that you've 'removed it all' - even mastectomies leave a few breast cells. But for classic LCIS alone, that isn't necessary. Even if, later on, this classic LCIS person gets invasive breast cancer, the invasive cancer can often be in a location where there was NO LCIS.

Your picture is, of course, more complicated than this, so, as Cathy said, its good to get onc consults.

In this small study, "No clinically meaningful differences in survival were found between these mixed carcinomas and pure IDC or ILC of the breast or between mixed tumours with predominantly ductal or lobular phenotype."http://www.ncbi.nlm.nih.gov/pubmed/18404368

Grakenmom · September 2009

Thank you all for the information - I really appreciate it. My first visit with an oncologist will be next Weds, so I'd like to be prepared with all my questions.

Many thanks - best to you all,

Erika

DCIS/PLCIS/ALH - any help/advice appreciated

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