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ADK · August 2008

Hello ladies,

I am a DCIS/IDC dx so I don't know the answer to this. I was speaking with a neighbor yesterday about BC and she said she was dx 5 years ago with LCIS. She went on to say that she refused chemo. Have any of you LCIS ladies done chemo or was chemo ever suggested for you? It just didn't sound right to me.

Thank you.

leaf · August 2008

You are right, ADK. If her diagnosis is LCIS and NOTHING WORSE, then I can't imagine why they would recommend chemo. That is, unless she is defining 'chemo' as tamoxifen or one of the anti-hormonals.

The NCI site says Treatment Options for Patients with LCIS

Observation after diagnostic biopsy.

Tamoxifen to decrease the incidence of subsequent breast cancers.

Ongoing breast cancer prevention trials (including the National Cancer Institute of Canada's trial [CAN-NCIC-MAP3], for example).

Bilateral prophylactic total mastectomy, without axillary node dissection.

http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

I did see a Pubmed abstract or two about trying radiation for LCIS (in France), but that's the only other novel approaches that I've heard.

I'm sure that Dr. Susan Love would like to see an interductal approach, but I don't know if they could with any certainty get any meds all the way to the lobules.

There's a lot we don't understand about LCIS. I certainly don't understand how one spot of LCIS in one breast can put both breasts at risk, but that's what the statistics seem to show. At least for women with LCIS and nothing worse.

ADK · August 2008

Thank you for the response - she did say she did 33 rads and Tamoxifen for 5 years (she was saying that she just hit her 5 year anniversary), but she clearly said it was not invasive and it was lobular. She did a lumpectomy and not a mastectomy. I was really confused by what she was saying because she was claiming that her oncologist "went to bat" for her about chemo. I had seen the same oncologist and really did not get along with her. I am concerned that this oncologist said something to my neighbor that was incorrect (this oncologist had done a similar thing to me, saying that I had elevated levels of something in an effort to scare me into doing tamoxifen when my elevated levels were the result of a different disorder I have).

Thanks.

Anonymous · August 2008

ADK----LCIS does not require radiation (or chemo either), so if she had radiation and it was lobular, she probably had ILC. She probably meant it was not metastatic. A lot of people confuse the terms invasive with metastatic (my own mom being one of them--she had ILC with lumpectomy, rads and tamox and is a survivor of over 21 years and doing well).

Anne

leaf · August 2008

I agree with awb.

I don't understand how her insurance company (assuming she has insurance) would OK radiation or chemo for LCIS and nothing worse. My friend, who has a non-breast cancer, said her rads, which were every weekday for about a month, cost some $100K.

There may be some differences of opinion when you have LCIS *AND* something invasive whether the LCIS portion puts you at increased risk for recurrence or a 2nd breast cancer. I know there were some studies that claimed that lumpectomy + rads were ok for some cases of LCIS + invasive, while others (perhaps a minority?) thought differently. I think that one paper funded by ACS thought breast conservation was an option with early invasive + LCIS.

ADK · August 2008

I really don't know for sure - she said it was lobular and in situ. She also said she did 33 rads, so that's an excellent point about the insurance company. I am certain she did not pay for it herself. I will ask her about it the next time I see her.

Thanks for your responses.

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