Breast Cancer Mom Blog

Joanie207

To all my fellow LCIS friends - I just wanted you to know that I have created a blog and you are welcome to follow along. We are certainly unique in our diagnosis (is it cancer or is it not?) and I thought it might help others with LCIS to follow along on one mom's journey. If anyone else has a blog I would be happy to link to yours. Thanks. Have a great weekend. Here's the link:

www.breastcancermom.blogspot.com

Joanie

Krisc

I have read your PM Joanie, thanks for replying.  I think all of us with LCIS can relate so well with one another, especially those of us who are in the "waiting and watching" mode.  Like I said before your blogs are very interesting.  I was wondering if anyone out there was diagnosed with LCIS and went on a year or more and developed invasive breast cancer.  I know the oncologist and breast surgeon and what I have read on LCIS say it tends to be 5, 10 or 15 years out from diagnosis, if then.  But how do they know how long you have had LCIS.  I was diagnosed at 54, but has it been there for years and now only diagnosed since microcals showed up on my annual mammogram?  I wonder how many are really out there with LCIS, I know of 1 other person in my city.  I am sure there must be others.  I am always encouraged when I read from Ann or Leaf because they have had LCIS for a few years.  The other person in my area was diagnosed 11 years ago. Well thanks for letting me ramble.  I hope everyone has a wonderful long weekend, stay safe and healthy y'all!!!!

leaf

Well, studies will give you a lot more information than will anecdotes. 

In this one 2005 study, this is a statement about LCIS diagnosis and subsequent invasive breast cancer diagnosis.

In Table 2, the cumulative incidence of IBC is shown according to the age distribution of the LCIS patients. For all age groups, the rates of IBC continually increased over time. At 5, 10, and 15 years, 2,959 (60.9%), 1,664 (34.2%), and 724 (14.9%) LCIS patients remained at risk for IBC, respectively, and the incidence of IBC increased from 4.1% ± 0.3% (at 5 years) to 7.1% ± 0.5% (at 10 years) and to 11.3% ± 0.8% (at 15 years). As expected, the incidence of IBC was greater with increasing age (Table 2). For patients with LCIS under age 40 years, the incidence of IBC 10 years later was 5.6% ± 1.5% compared with 10.4% ± 1.4% for patients 60 to 69 years of age at LCIS diagnosis and 13.9% ± 2.5% for patients with LCIS older than age 70 years (P < .001). The age of developing IBC after LCIS seemed to parallel the age of developing IBC in the general population, and the SIRs for the five different age groups examined in Table 2 ranged from 2.1 to 3.3, with CIs overlapping. http://jco.ascopubs.org/cgi/content/full/23/24/5534

I'd print out table2, but formatting seems to get ruined when I try to copy tables.

No, we don't know the natural history of LCIS.  We don't know if all women who have ILC  (or IDC) started out as having LCIS.  We don't know how many women out there have LCIS and don't know it.

As with invasive breast cancer, mastectomy greatly reduced, but did not eliminate, the incidence of breast cancer in the mastectomy breast.  " A substantial proportion of patients had mastectomy (n = 1,281), and as expected, this intervention was associated with dramatic (although not complete) reduction in the rate of ipsilateral occurrences of IBC, with less than 0.5% to 1.0% ipsilateral IBC 15 to 25 years after mastectomy (P < .001)." http://jco.ascopubs.org/cgi/content/full/23/24/5534

Hope this helps, Krisc

Anonymous

Joanie----thanks for posting your blog---I read it through and will continue to follow your journey with LCIS. I was diagnosed 6 years ago (lumpectomy, took tamoxifen for 5 years, now taking Evista and continuing on high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 month schedule);  I have had similar questions and concerns over the years. Our diagnosis is like a double edged sword: we don't have to endure chemo or rads, but we have the challenge of living daily with high risk.(and all that goes with that).

Krisc----- years ago a friend of mine had LCIS diagnosed, but the doctor never recommended tamoxifen----4 years later, she was diagnosed with both ILC and IDC---would she have developed invasive bc had she taken tamoxifen for prevention?  We will never know for sure, but she said she was very happy that I was "doing something about the LCIS" by taking tamox and wished she'd been given tamox when first daignosed. (she's gone thru the whole journey of chemo, hair loss, multiple surgeries, reconstruction).

Anne