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Topic: Question about the word Malignancy

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Jan 11, 2008 06:49PM

liveit56 wrote:

I was told I have LCIS and that it is not cancer but a marker that I could get cancer and I have to be watched more often and I was taken off my HRT and now they want me to take Evista...here is my question...why would it say on my Pathologic Diagnosis that the Internal consultant has reviewed the slides and concur with the diagnosis of malignancy?...my doctor never mention this...now I am really confused and scared.

Anyone else have this on their report?

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Jan 11, 2008 07:51PM Peaches70 wrote:

You will run into that discrepancy over and over. Some people say that LCIS is definitely in the cancer range, while others say it is only "neoplasia" and not cancer. I never know what to say when that question comes up. I just noticed on a copy of my last mammo under signs & symptoms: hx rt breast ca - partial mastectomy. Wow. I thought it was a biopsy or a lumpectomy. I never applied that term. And the "ca" kind of surprised me. But it's all semantics. What really matters is what it actually means to us healthwise.

Anne

Dx 1/25/2007, LCIS, Stage 0
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Jan 11, 2008 09:48PM liveit56 wrote:

Anne, I really am confused...malignancy always means to me cancer and it did to my Mom and grandma and my Dad...that word should not be used as well as carcinoma with LCIS if we don't have cancer.

No wonder we are confused and scared...to me healthwise is scares the living daylights out of me.

I don't like waiting for the other shoe to drop and I sure don't want my breast removed if I don't have cancer....I just so overwhelmed with all of this . 

Thank you for listening to me...needed someone to just listen to my fears I guess...I don't want to worry my family any more than they are already. 

Take care and bless you.

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Jan 11, 2008 10:55PM awb wrote:


liveit56---when people hear the word "cancer", they automatically think of things like radiation, chemo, hair falling out, cancer spreading to other parts of the body;  things that are most often associated with invasive cancer. (Thanks to TV, there's a lot of ignorance perpetuated about cancer in general.--JMO)  But LCIS is a NON-invasive breast cancer; there ARE malignant cells (my pathology report stated malignant as well with my LCIS diagnosis) that are contained within the lobules and haven't broken thru the walls into the surrounding breast tissue (as in invasive bc).  There is a lot of controversy over LCIS---many in the medical community feel it is "just" a marker of higher risk and there are those that feel that it may be an actual precursor of invasive disease.
   The difficulty with LCIS is that they don't know who will go on to develop an invasive bc and who won't.  I've read stats anywhere from 5% all the way up to 25%; recently I read 17% within 15 years.  All my docs (pcp,gyn, bs, onc) refer to LCIS as cancer, but all felt BPMs were too drastic a measure and recommended close monitoring and tamoxifen.  So I've been on tamox for over 4 years, have mammos alternating with MRIs every 6 months, do frequent breast exams;  hopefully if anything ever develops it will be found early when it is most easily treated.
 I'm not ready to consider BPMs just yet, but I definitely would if anything invasive were ever found. The close monitoring is a comfort, but it is also stressful at times as well. We all have to decide for ourselves what level of risk we can live with.
"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Jan 12, 2008 08:33AM leaf wrote:

There is controversy about just about everything to do with LCIS.

The NCI states that the name LCIS is misleading, and more properly termed lobular neoplasia. and that most oncologists consider it benign. www.cancer.gov/cancertopics/pd...

I have read papers that have also stated it should NOT be called lobular neoplasia, and should be called LCIS.

There are controversies on the definition of 'cancer' and 'malignancy'. It is not a sharp, demarcated line.

Atypical lobular hyperplasia (ALH) and lobular carcinoma in situ (LCIS) – lesions that are also referred to under the umbrella heading of 'lobular neoplasia' (LN) – occur relatively infrequently in the breast. However, problems and controversies surrounding the most appropriate terminology and classification for these lesions, and the best course of long-term management after diagnosis, are far from infrequent.

Foote and Stewart first coined the term LCIS in 1941 [1], choosing the name to highlight the morphological similarities between the cells of LCIS and those of frankly invasive lobular carcinoma. They recognised parallels with ductal carcinoma in situ (DCIS), namely foci of neoplastic cells that were still contained within a basement membrane. In anticipating that LCIS, like DCIS, was a step along the pathway to invasive cancer, they recommended mastectomy as the standard form of treatment; this management plan was adopted for many years. The term ALH was subsequently introduced to describe morphologically similar but less well developed lesions. LN was a term introduced by Haagensen in 1978 [2] to cover the full range of proliferation, including both ALH and LCIS within the spectrum.

ALH and LCIS have since become well-established histopathological entities in the classification of breast neoplasia, but it has become clear over the past 60 years that they are not precursor lesions for invasive carcinoma in the same way as high-grade DCIS of comedo type [3-6]. A diagnosis of ALH/LCIS today is often seen as a 'risk indicator' for subsequent carcinoma rather than a true precursor. Radical surgical treatment has fallen out of favour but there is a lack of consensus on what the most appropriate management of patients diagnosed with ALH/LCIS should be. Recommendations for treatment vary from follow-up with regular mammography, to follow-up alone or simply 'no action' [2,7,8]. However, recent work is once again suggesting that LCIS is indeed a non-obligate precursor lesion for carcinoma, a finding that might have significant implications for the management of patients diagnosed with this disease.www.pubmedcentral.nih.gov/arti... (This paper was written in 2003.)

When they ask on a questionaire whether or not I have been diagnosed with cancer Yes No, I usually circle both.

It is difficult to determine how many women with LCIS go on to develop invasive breast cancer or DCIS, in part because we don't know how many women have LCIS.

However, in the Port study at Sloan Kettering, the raw incidence was about 1% per year. www.ncbi.nlm.nih.gov/pubmed/17...
I thought this study was valuable, because theoretically they would more likely be diagnosing LCIS more consistently, and have a more homogeneous population.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 12, 2008 12:22PM liveit56 wrote:

Thank you all for your replies....lot of good information and I am truly trying to understand all of this.

I haven't even started the Evista yet and my doctor is angry with me for not doing so.   I just need to think more and understand what is happening.

I not only have to deal with this but my husband had bladder cancer and is tested every six months after his treatment  but, now they have found a spot on his lungs and, I am also dealing with my 84 year old father that also has cancer and, my Mom had uterine cancer and also my Grandma so I am not new to cancer but this LCIS has really floored me.

Sometimes I just want to fall off the face of this earth...it has really been difficult this past year...I am just overwhelm and trying to do the best I can...How do you guys do it?  I have been reading on here and there are some remarkable people here...I don't know how you all do what you do.

I am so glad there is a place like this to come to especially about LCIS...I feel so guilty complaining like I am when a lot of you have been to hell and back.

Thank you all for the info and bless you all.

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Jan 12, 2008 04:21PM Peaches70 wrote:

liveit56,

I don't see any harm in your going on Evista. You can always stop. It has been used for years for osteoporosis, so it's not really experimental. The side effects are mild. In my case, it really amounts to increased hot flashes, and even those seem to come and go. I am concerned a little about the increased risk of stroke and would not have even begun it if there had been a history in my family. What I did was go with the close monitoring and Evista at first, while I considered my options. After about 6 months, I began seriously thinking about PBMs. I talked to my various doctors about it. They are all supportive of this action. If you start taking Evista, you are doing something to lower your risk, which may make you feel less uncomfortable about having LCIS. In my case, the emotional and physical toll of the tests and biopsies, with the move to a six month monitoring schedule, has made me reconsider staying on the close monitoring path. I realize that I want to avoid getting "real" cancer altogether. If I do this now, I can stop having mammograms, stop worrying about biopsies, and avoid having to have chemo. That's my choice. But if I were you, I wouldn't hesitate to start Evista.

Anne

Dx 1/25/2007, LCIS, Stage 0
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Jan 14, 2008 02:05PM liveit56 wrote:

Anne,thanks for being up front with me about things and I started my Evista today...I still have lots of concern but you are right I need to do what is going to help me and right now my options for me is to do the close monitoring and the Evista.

I wish you the very best with what ever you decide to do....the decisions are hard and personal.

Thanks again and good luck.

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