Breast Reduction lead to dx of LCIS & ALH

Nope, no meds. I had a pulmonary embolism back in the late 60"s and the oncologist didn't feel that she wanted to take the risk of possibly another.

vmudrow:  Isnt the TE done to expand the skin for the implant to be put in at a later time and if they do the skin sparing you already have the skin and the implant could be put in at that time.  Anyway, that what I thought. So with you they did the skin sparing and put in the TE?

Not much is known about LCIS. After the condition was identified near a half century ago, precious little research has been done. LCIS is a pre invasive lobular cancer and/or marker for lobular or ductal cancer of either breast or it may mean nothing at all.



Whatever it means, frequent monitoring and medication are prescribed if you choose breast conservation. A chance of lumphedema and disfigurement await those who chose mastectomy.



Both choices involve risk and a life that's changed. Consideration of lifestyle, life stage, general health, finances, access (or no) to competent care, family, and feelings that seemingly arise from nowhere, must be approached thoughtfully.



The condition of LCIS affords a woman time to weigh her options.

I had a skin/nipple sparing BMX.  I had lots of extra skin after four pregnancies and four years of nursing so I thought that maybe I wouldn't have to go the TE route.  My PS believes that immediate implants (without TEs) are not as sucessful and said the only time he'll do them is if someone comes from out of country and only has a short time in which to get the reconstruction done.  He likes to watch how the skin does after the mastectomy surgery and feels like the TE expansion period is ideal for this.  There are so many varying opinions from the plastic surgeons on this issue though.

Kelly

jtslg:

So if you have the PBM, the PS will do the skin sparing with immediate implants?  Will you do the silcone or saline?

Finally connected with my friend who had reduction surgery (revealing LCIS) who then had a PBLM.

She said the reduction surgery was more difficult, by far. She thinks the multiple incisions with reduction surgery made it more difficult.

I also had a breast reduction and ended up with a diag of LCIS and YES it is insult to injury....at least for me.  The reduction was in Dec of '09. I am scheduled for BMX.  Surgery is 1st week in May. My BS will be able to do skin sparing, but not nipple sparing.  I am 37 years old, two children that are 16 & 17.....but I am adopted.  because I have no way of knowing my family history this is just the right decision for me.  I wish you all the luck in the world navigating this confusing and daunting list of decisions that you will have to make.  Just try to remember that YOU can make decisions.  You are not at the mercy of the Dr's treating you.  Find all of the information that you can and then stop and think.  There are so many well wishers that dilute what should be the topic at hand...what you want for yourself and your future.

 Don't get me wrong, I am scared.  I aparently have issues with being adopted that I never knew were there until now.  Now that I have faced these fears and taken a real look at myself I know what I need to do for my own sanity.  I wish there was a way for people to understand what this really feels like (other than those who are living it).....it is hard to explain why I am taking a month off of work to people who just don't get it and judge far to quickly. Bacause of sites like this, I feel like I am not alone.  

I want to express my sincere thanks to all of those women that are willing to open up and care for the rest of us. Unbelievably awesome!

Of course you are terrified!  You don't know what is ahead of you.  You don't know if you have something totally life-changing or not.

LCIS is called 'pre-cancer' by some because by definition, it has not invaded other tissues.

The National Cancer Institute defines cancer as a term used for diseases in which abnormal cells divide without control and are able to invade other tissues. Cancer cells can spread to other parts of the body through the blood and lymph systems. http://www.cancer.gov/cancertopics/cancerlibrary/what-is-cancer

LCIS can only be diagnosed by a pathologist, looking at slides under the microscope.  They often also use chemicals/biologic agents that help reveal what types of molecules are on the cell surface (such as estrogen, progesterone, E-cadherin, etc.) to help with deciding what disease is present.

In order for the pathologist to look at the cells under the light microscope, the tissue has to be thin enough to see through.  So the tissue must be sliced very thin.  When you slice, say, a piece of raw meat, its hard to slice it thinly because its not rigid.  So they normally have to dump the tissue in paraffin or plastic to stiffen it in order to slice it thinly.  So, the cells that they look at under the microscope are definitely dead and not growing.

So they can't directly look at the cells dividing under the microscope (though they can see how many cells were dividing when the cells died.)  So its hard to directly measure 'uncontrolled growth', one of the definitions of cancer.  They may be able to estimate how many cells are dividing, but they can't directly measure if the growth is uncontrolled.

Lobules and ducts form an enclosed space in the breast which leads to the nipple.  So the lobules and ducts are like a complex series of streets that end up at the nipple.  These streets are lined by sidewalks (the 'basement membrane') which lines the ducts and lobules.  The cells that are abnormal in ALH, ADH, LCIS, or DCIS are the cells that line the ducts and lobules - they are on the 'inner' side of the basement membrane, like cars parked along the street.  In LCIS or DCIS, these cells not only are parked on the streets, they fill the streets solidly and expanded the lobules. (Sometimes LCIS is described as 'marbles in a bag', the 'bag' being the lobule, mixing metaphors.)  In LCIS, these cells cannot grow indefinitely, because after they expanded the lobules to the maximum exten possible (there must be a 'breaking point' of the basement membrane), they'd have to break through the basement membrane.  If they crossed the basement membrane, by definition, it would be invasive. (I don't know how some LCIS cells become invasive.  But the basement membrane must be crossed for the cancer to be invasive.)

In invasive ductal or lobular cancer, the cancerous cells have 'broken through' the basement membrane, taking my analogy further, like driving across the sidewalk into the driveway of houses.  From there they can access the blood vessels and lymph vessels, and travel further.

By definition, LCIS and DCIS cells have NOT crossed the basement membrane. These abnormal cells have *not* crossed the basement membrane, so they have no access to the blood or lymph, thus cannot invade other tissues.  These cells only have access to the lobules and ducts, to the nipple.

It is certainly possible for a person to have simultaneous LCIS, DCIS, and/or invasive breast cancer.  A core biopsy can show only LCIS, but it is possible for you to have undetected 'something worse' (DCIS or invasive).  People have breast excisions after a core biopsy shows LCIS so you can look around the area that contains LCIS and see if 'cars in your neighborhood' have crossed the basement membrane or if the ductal cells have filled the streets (DCIS). 

Cancer is not a 'line in the sand'.  There are cells that look totally normal, and there are cells that are clearly cancer.  But cells do not just turn from normal to completely cancerous in one step.  It is a gradual process (probably).  Hyperplastic (not atypical cells) in the lobules are a little more abnormal than normal cells.  Atypical hyperplastic lobular cells are a little more abnormal (and are called ALH), and when they grow in a more abnormal fashion they are classified as LCIS.  There is controversy on something being classified as cancer.  Different experts can have different opinions about how they classify LCIS, but most (not all but most) experts do NOT classify LCIS as cancer.

So, yes, pre-cancer means that the cells in LCIS or DCIS have aspects of cancerous looking cells: they are more irregular (like old, beat up cars).  But neither LCIS or DCIS by definition can invade other tissues. Here are some words that Stanford uses to define LCIS http://surgpathcriteria.stanford.edu/breast/lcis/printable.html  Vanderbilt http://ccm.ucdavis.edu/bcancercd/312/lcis.html

'High' is a relative term.  Women with a BRCA1 or BRCA2 abnormality (even if they don't currently have any other risk factors) have a higher lifetime incidence of breast cancer than LCIS women do.  Pleomorphic LCIS women may have a higher risk, so they often choose more aggressive treatments: pleomorphic ILC has a worse prognosis than 'garden variety' ILC. Women with a deleterious BRCA1 or BRCA 2 mutation have something like a 60-90% lifetime chance of breast cancer, without other measures.

The 'average age' to get an LCIS diagnosis is in one's 40s or 50s.

In the Chuba study jco.ascopubs.org/content/23/24/5534.full.pdf, the women who got LCIS in their 60s actually had the highest rate of breast cancer: a cumulative 24.9% 25 years after diagnosis, which ends up being about 1% per year on average.  In contrast, the women who were diagnosed with LCIS at age <40 had a cumulative 8.3% incidence of breast cancer 25 years after diagnosis, which averages out to about 0.3% per year.  This 'average' number is misleading, because older women had an increased risk of breast cancer, analagous to 'normal' women who also have an increased risk of breast cancer as they age. Now, most of the women <40 years old at diagnosis have a lot longer to live than the women who were diagnosed at age 60, but we don't have data longer than 25 years.

Note these percentages (lifetime 8.3%, lifetime 25%) are the number of women who get invasive breast cancer.  They are NOT the number of women who DIE of breast cancer.

Maybe you think that 8.3% incidence of invasive breast cancer after 25 years or 25% after 25 years is high.  These are certainly numbers that are lower than that of women with a deleterious BRCA1 or BRCA2 mutation.  Also remember that the 'average' woman in the USA has about a 13% lifetime chance of getting breast cancer.

LCIS women are normally followed more closely than the average woman in the US who has not had breast cancer and who have a weak family history.  These women in the Chuba study were diagnosed some time between 1973 and 1998.  Even if you only receive yearly mammos (as recommended by NCCN) as I do, mammography has improved since then.  In the more recent 2007 Port et all study http://www.ncbi.nlm.nih.gov/pubmed/17206485  that only lasted about 5 years, no ALH or LCIS woman was diagnosed with anything worse than stage II.

Please know we are thinking of you, and holding out our hands to you.

jtslg: I had my PBM on 4/1/811. I have to tell you that the surgery was not bad at all and believe me I was a nervous wreck.  Everything went well. Sentinol nodes checked on left side where LCIS and ALH was and was negative.  I have to say it was a bit painful the first date day, but after that not bad at all.  I'm am so very happy that this is over and done with.I realy feel great. and i have peace of mind.

 Thirteen years ago, I had 3 biopsies in less than 2 years and was diagnosed with LCIS.  I was told I had the option of either bi-lateral mastectomy or close monitoring (exams every 6 months and mammograms).  I wasn't ready for the surgery and besides, all my research revealed that LCIS wasn't even a true pre-cancer, so I felt relatively comfortable with my decision for close monitoring.  

Ten years later, I felt a 'nudge' to re-visit surgery.  I decided that while a mastectomy was still out of the question for me, I could have a breast reduction, reasoning that if I had the tissue reduced, I would reduce my chances of breast cancer.  So, I had the elective, breast reduction surgery and like you, the pathology report showed LCIS. However, the surgeon and pathologist were alarmed and I was referred to a breast surgeon who specialized in mastectomies.  

I knew it was the right decision as I felt that the 'nudge' I'd felt, followed by a series of synchronicities that seemed to be lining up for me, were intended to guide me to having the surgery.  Both breasts were filled with 3 different pre-cancers, including the LCIS.  I'd had 3 biopsies, 2 of which were LCIS and there is a family history. 

The book I most relied on at the time of my first biopsies was 'The Breast Book by Dr. Susan Love.'  But, she really had little to say about LCIS being anything but a high-risk marker for developing breast cancer in either breast over a lifetime.  She also said that some women chose bi-lateral mastectomy after undergoing several biopsies and close monitoring.  It was too stressful though - the waiting for the results of the mammograms, and the pathology report following the surgery to remove the offending tissue, recovery, etc. The women who opted for mastectomies, felt that any minute they would be told they had breast cancer.  They decided to be pro-active and had the surgery.

I chose to have a Tram Flap Reconstruction at the same time.  The breasts were made from my abdominal, rectus muscle and belly fat.  The tissue is completely removed and the blood vessels from the abdomen are tunneled up to your breasts and attached. It's quite involved but worth it.  While I was recovering at home, my sister found a lump on her breast and chose chemo and radiation.  I sent her the 5th edition of Dr. Love's book, as she had many questions.  I bought myself a copy and what I found is an excerpt copied below for you.  They did a study between the 10 years from my first biopsy to my more recent surgery after finding the LCIS so prevelent in both breasts.  

I have never regretted my decision.  In fact, one of the things that lined up for me was having the doctor who developed the Tram Flap Procedure, as part of my surgical team... he happened to be in Toronto at the time of my surgery and asked if he could participate.  Just one example of how things lined up for me.

This update on LCIS in Dr. Love's book, shows that it is capable of becoming invasive.  You need to do some research for yourself (start by buying the book) and seriously consider your options.   

Lobular Cancer in Situ  

(excerpt from 'The Breast Book by Dr. Susan Love'  - 5th edition)

"We thought we knew the natural history of LCIS based on studies by Cushman Haagensen in 1978, but recent work has challenged our previous ideas.  The old theory was that LCIS doesn’t grow into cancer but signals a possible danger--the way, for example, an overcast day warns you it may rain. Because of this, many experts believed that lobular carcinoma in situ wasn’t a true pre-cancer but more of a risk factor.  

Recent data, however, suggests that this may not be the case.  The first piece of evidence that LCIS can actually progress to invasive lobular cancer, came from a 2004 analysis of 180 women who had participated in a study of the National surgical Adjuvant Breast and Bowel Project (NSABP).  Overall they found after 12 years of follow-up that nine (5 percent) invasive breast cancers developed in the same breast as the original lesions, and eight of these (89 percent) were invasive lobular cancers--in the same area as the original LCIS.

A second piece of evidence was a study of women who had both LCIS and invasive lobular cancer in the same breast.  The pattern of mutations in the involved cells was very similar, suggesting that one had indeed evolved from the other.  More recently molecular studies have shown that both LCIS and infiltrating lobular caners are estrogen positive.. 

Three other studies have been published since 1996, including one of 214 women with LCIS, which suggests a continuous 1 percent per year risk of developing invasive breast cancer.  This risk can be compounded by other risk factors for breast cancer.  What can you do if you have lobular carcinoma in-situ?  Basically, you want to prevent yourself from getting invasive breast cancer.  There are a number of options; the most drastic is bilateral prophylactic mastectomy.  Why bilateral (both breasts)?  Because the risk occurs in both breasts..."