Nov 20, 2007 08:13AM - edited Nov 20, 2007 09:21AM by leaf
I am so sorry you are going through this Suze. Welcome to our forum!
My history: I was diagnosed with LCIS 12-05 from a stereotactic biopsy for 'suspicious calcifications', went on tamoxifen 7-06, had 2 biopsies (one 'for potential mis-labeling as scar tissue' 2-07, which came back benign. I had them reread at my local major institution 7-07, and they saw LCIS + ALH, and ductal hyperplasia (not atypical). I had an extremely disappointing consult at a major institution (it was *not* Duke or Sloan Kettering or MD Anderson or John Hopkins or an ivy league school.) I was disappointed because they said I had a breast cancer risk of 10-60%, probably 10-20%. I had never heard of such low figures. I found this 10-20% risk cited in the MRI screening American Cancer Society paper. I think that paper, written by a committee, was *self* inconsistent with risk figures of LCIS. But it spurned me to look further, and I think they really simply do not have the knowledge to predict which individual women with LCIS (or anything else) will get breast cancer and who will not (for women with a weak family history.)
I think that almost all aspects of LCIS have been controversial since it was first proposed as a diagnosis about 1948.
There is not even universal agreement whether or not it should be considered a cancer. The NCI (National Cancer Institute) website says it is better termed lobular neoplasia, that most oncologists consider it benign, and that it is a risk factor for increased incidence of breast cancer. It opines that most breast surgeons are reluctant to do bilateral mastectomies unless you have a family history. I have read another paper that opines that the term LCIS should be used, as opposed to lobular neoplasia.
Up until about the 1990s, I think that bilateral mastectomies were routinely done on women with LCIS and nothing worse. I think that is because they found LCIS is often multifocal and bilateral, and they were equating LCIS with DCIS, which is normally totally excised. But I think its clear that LCIS is a different animal than DCIS. BPMs became much less popular when it was found that early invasive breast cancer can be treated with lumpectomy with radiation, and breast surgeons were not eager to treat LCIS more aggressively than invasive breast cancer.
Treatment of LCIS is a very personal, individual choice. There are NO right or wrong answers for everyone. There is only the best choice for YOU. Some of the factors that MAY influence your choice, that NO ONE can make for you include: how well you are able to tolerate the anxiety involved with all the current treatment choices? How do you feel about using antihormonals with their side effects, and how do you feel about your breasts?
When I looked at Pubmed, no I couldn't find a more newly published study. But just because a study is newly published, does not mean it is a significant study. I don't know what they mean that the LCIS + ALH women "were reviewed" - but those dates are 10-20 years old. Screening has improved since then.
I am not a physician, or a breast cancer statistician, or have a pathology background.
Unfortunately, LCIS (and nothing worse) is quite unusual, so it is very hard to find studies that are large. If you do have large studies, you have the problem of knowing such things as - was LCIS diagnosed consistently (was the pathologist right?)? The women will come from a variety of backgrounds. Will those women have the same risk factors as I do? Yes, they can do statistics on small studies, but the statistics do not mean very much. In your abstract, I cannot calculate from the data given, what the final risk for breast cancer was for their group, because the women were followed for 3-257 months. One would have to look at the original paper.
You can, and do, have conflicting studies on many aspects of breast cancer. I am sure there is a lot of disagreement among doctors. Just looking at the women who have posted here, we LCIS women have been recommended everything from urging bilateral mastectomies to urging watchful waiting. (My surgeon has told be flat out "I am not interested in doing any more surgery on you.", but allowed me going on tamoxifen. I am not pleased with her attitude.)
When you enter LCIS into the Pubmed site, you get some 200+ citations. Most of these citations are from studies that ask the question: If you find LCIS in a biopsy, should you go back in again at that time and do an excision to find out if you have anything worse? I think, though we still get more studies on nuances of this, that most people think the answer to this is Yes. I think most studies have found that when you are diagnosed with LCIS that there might be a ??10-30??% chance they will find something worse (in other words DCIS or invasive breast cancer) in the area they found the LCIS. So I think most places do encourage a woman to have the biopsy area excised when you get LCIS (and nothing worse) in a biopsy. The purpose of this is NOT to excise all of the LCIS (which would be probably impossible without doing bilateral mastectomies), but to see if there is any DCIS or invasive cancer hanging around, which is treated differently.
It is hard to analyze your abstract, because we are not looking at the paper. Plus, of course, I am not a physician or have enough knowledge about LCIS. Looking at the phrases you have highlighted, I think it is fairly well established that the average age of women when they are diagnosed with LCIS is in their 40s or 50s.
I do not understand the significance of the sentence that 52 cases of ALH and LCIS were occasionally verified pathologically after surgery for benign diseases. I don't know if this means that occasionally these women were biopsied or used ductal lavage, I would not expect that to be a significant finding. I think it is routine and expected that if they find something suspicious on screening that they will biopsy it, just as they would with anyone.
I do not understand the context of their last sentence."The excisional biopsy might be necessary to ALH and LCIS." I do not know if they are implying that excisional biopsy should be routine when ALH and LCIS are diagnosed (to rule out invasive breast cancer or DCIS) or if they are implying that all ALH and LCIS that is present in a woman should be excised (which often would require a bilateral mastectomy, because they usually can only detect LCIS by looking at it under the microscope) or what. I am guessing that they are encouraging excisional biopsy around the biopsy area when LCIS is found on biopsy, but I am not sure about this. This is because many other studies feel this way. (I suspect one reason why this is such a popular study is that it is fairly easy to do!!)
I think it is fairly well established that the risk of breast cancer for LCIS does NOT go down after several decades (unlike invasive breast cancer.)
There are many other studies that look at the incidence of LCIS in women who HAVE invasive breast cancer. This is not the situation that women with LCIS and nothing worse have.
Unless you have a strong family history of breast cancer, and/or are independently wealthy, you *may* have problems in getting your insurance company to cover bilateral mastectomies prophylactically.
There are a lot of factors to consider when you choose a treatment option. Bilateral mastectomies are, of course, an irreversible decision.
If I was independently wealthy, then I personally like would be followed at a prominent institution, though not at my local major institution for my breast care. I trust my onc more than I do the way I was treated at my local major institution. (Though of course I have BIG GAPS in my knowledge of LCIS, I could have cited journal articles when they said "If you want more information, it would have to be gotten from journals.") I live much farther away from Duke than you do. I know there are other women who have posted on this board that have been pleased with the way they are followed at Duke, and travel all day to get care there. However, your insurance may very well not cover care at Duke, or you may have to have large co-pays. So this is a very individual decision as well.
I do not know how how expert the different places are around the country.
It is so hard to make these decisions.
We are all different, but my perspective changed after I found my radiologists had missed something totally obvious 3 times in a row. This was after I had a wire insertion where I had a pain score of at least 8 for at least an hour and the radiologist never inquired if I was having any pain. (If I would have said I was in pain, I would have cried, thus moved, thus ruined the procedure.) It does not give me a lot of confidence in my screening. I know radiologists are rushed. I know people can make mistakes. I know breast cancer is difficult to diagnose, but I certainly hate the roller coaster of screening.
I know this is a tough time for you. Please know I am thinking of you.