Topic: LCIS Diagnosis--What Do I do next?

Hi there nala. I'm so sorry you are going through this. I'm sorry you had to join our group, but I'm glad you found us.

LCIS (and nothing worse) is a fairly unusual condition. I knew I would never find an in-person support group. One very rough estimate is maybe 1:10,000 women-years, though that may be off by orders of magnitude. http://www.ncbi.nlm.nih.gov/pubmed/12353815?dopt=abstractplus. The incidence is probably increasing. So its not unexpected that you are getting lots of confusing, contradictory answers.

There is hardly anything that is NOT controversial about LCIS. Everything from its name (what it should be called), its frequency (how often it occurs), its natural history (what happens to women who have LCIS), what risk LCIS (and nothing worse) confers, and how it should be managed, are all controversial.


It is not controversial (that I know of) that it was first described in the 1940s by the respected pathologists Foote and Stewart. They named it LCIS. The name stuck even though now most oncologists don't consider it cancer. (An alternative name, which also includes ALH, is 'lobular neoplasia'.) They thought LCIS was like DCIS, but in the lobules. I guess people thought it should be treated the same. They didn't know the natural history of the disease. (They don't know a whole lot more now, but I think that many people feel that MOST women with LCIS do NOT end up getting breast cancer in their lifetime- but this is definitely a VERY controversial area. ) As far as I know, up until about the 1990s, LCIS with nothing worse was routinely treated with bilateral prophylactic mastectomies. Then, when they discovered that early invasive cancer could be treated by lumpectomy + radiation, perhaps most breast surgeons thought that prophylactic bilateral mastectomies was not appropriate treatment for women who did NOT have invasive cancer.


I don't know why you should see a radiation oncologist. I think I've read most of the Pubmed abstracts on LCIS, and I only found 1 or maybe 2 papers where they tried to manage LCIS with radiation. This was in France.

First, get a copy of your pathology report to make sure you only have LCIS and nothing worse.


Second, I would make the decision whether or not you want to be excised http://community.breastcancer.org/topic/95/conversation/702563?page=1#idx_1. If you choose to get excised, they are doing this to help make sure there isn't something worse going on in the area (in other words DCIS or invasive). If you end up having something worse, then you will need to be treated for the 'something worse'.

If you end up 'just having LCIS and nothing worse': if you know right off the bat that you want mastectomies, most surgeons will want you to wait several months to make sure you really want this un-doable operation. Some people have problems with getting insurance coverage (women who are also BRCA positive have a much easier time, because it is generally thought that BRCA confers a higher risk of breast cancer than does LCIS.)


This is what the NCI (National Cancer Institute) says about LCIS. http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

Probably the next step may be whether or not you want to get your slides reread at a major university. I chose to do this last year, but it did cost be over $550/biopsy out of pocket. (Other people have cited less expensive rereads. I guess I live in an expensive area.)


Probably the next step is to see if you have a bad family history - if you want/need to get genetic counseling and/or testing. If there is any question, I would advise seeing a board certified genetics counselor at a major institution. Counselors should give you information about your risk for having a genetic mutation. They should not pressure you one way or another about genetic testing.


Next, is to explore your treatment options. You may want to see an oncologist to see about tamoxifen or other hormonal treatments (in some places they have breast surgeons prescribe hormonal treatments.) You may want to see a plastic surgeon if you are interested in mastectomy reconstruction. You will probably want to be followed by an oncologist or a breast surgeon to have clinical exams and imaging.



LCIS normally never shows up in any imaging technique. Some here have said it showed up in their imaging, but it is not common for it to show up in that way. For most LCIS women, they have suspicious calcifications and they do a biopsy and find LCIS. For most of the other LCIS women, they have a lump and find LCIS as an incidental finding. It is most commonly found as an incidental finding. This means that normally, LCIS does NOT show up on mammograms, ultrasounds, or MRI. It is normally only found on biopsy. Since not all women have breast biopsies, they don't know how many women are running around with LCIS and don't know it.


Most papers I've seen say that LCIS does not need to be excised to the margins. That is because it seems that LCIS confers an increased risk of breast cancer to both breasts, even the parts of the breast that do NOT have LCIS. LCIS seems to confer an increased risk of breast cancer to both breasts, even if there is only one small spot of LCIS in one breast only. Its a strange disease.


When I was diagnosed with LCIS and nothing worse, I thought this will be simple. I'll just find my risk of breast cancer, make my decision, and be on my way. Unfortunately, they don't know the risk of breast cancer for LCIS patients. I have a weak family history, and I have been quoted lifetime breast cancer risks as low as 10% (even less than the average woman in the United States), to 60%, to 80% (the latter figure in a breast cancer model that has NOT been compared to populations, has NOT been peer reviewed, and should NOT be used for clinical decisions.) I was told that my risk (I have LCIS and ALH and a weak family history) is probably close to 10%. Whether I agree with this or not is a different story.


Personally, I think that perhaps one of the more accurate estimates of LCIS risk may be about 0.7-1% per year. This means that in 5 years, your breast cancer risk may be 5x0.7=3.5% to 1x5=5% over 5 years. I think that since they don't know how much risk LCIS confers, it is not known if other risk factors confer a higher risk. For example, if you are 75 years old and have LCIS, it is not known if age (a known risk factor for breast cancer) adds any additional risk of breast cancer to your LCIS diagnosis. For some risk factors, the risks are additive or increased. Risks do NOT have to be additive. For example, if risk factor A confers a 10% risk and factor B confers a 20% risk, if you have both factor A and B, your total risk may be 30%, or it may be 10% or it may be 50%. They have to compare their models to people who actually have both factor A and B.

Because LCIS is so unusual, they don't have this data, or at least I have never seen it.


You can read my other posts, if you wish, about why I think the modified Gail model is very misleading. The modified Gail model is the breast cancer risk model that almost everyone uses to predict breast cancer unless you have a bad family history.


You will see posts here from women who were diagnosed with LCIS that have been recommended everything from bilateral mastectomies, to screening only (annual mammograms with clinical exams, much like the average woman over 50 in the US, but usually people get at least twice a year clinical exams.) Personally, my breast surgeon said "I do not want to do anymore surgery on you."


Treatment is a very individual choice. Since this is a weird, unusual disease, you may want to go to someone more specialized than your GP. I think all the women here are followed by either a breast surgeon or an oncologist.


As to whether or not you should call it cancer: to the question "Do you have a personal history of cancer?" I circle both Yes and No. You do have to be careful or you will spend 10 minutes explaining to the doc the situation with LCIS. You may have to convince them you are not crazy or in denial. ("But there's carcinoma in the name!") I think most oncologists consider LCIS a benign condition. That is because cancer is a continuum. There is not a straight line that separates benign from cancerous cells.


I would say that the current thinking by most oncologists is that LCIS is a marker for higher risk for breast cancer, and in some **unknown, but small** percentage of patients, it may be a nonobligate precursor for cancer. This means that for a small number of LCIS patients, their LCIS **may** or **may not** be on a direct pathway to cancer. That means for a small number of LCIS women, their LCIS may or may not be obligated to become breast cancer.

I think one LCIS woman here goes to Duke University. I heard another patient goes to Dr. Carol Fabian at the Univ. of Kansas.

There is NO RUSH to any of these decisions, unlike others who have worse diagnoses. Do what is best for YOU. Feel free to ask questions.

I visited my family doctor today and he is making an appoinment for me with a medical oncologist that he highly recommends.  I have the initial pathology report and it states that I have an extensive area of LCIS and that additional tests are being done for DCIS, invasive cancer, and hormone receptors.  I missed a call from the radiologist and I'm afraid one of the other tests may have come back positive.  Can LCIS be found in the ducts?

Thanks

Just to add something to the mix: very dense extensive areas of LCIS generally raise more alarms than diffuse findings.

Moogie

Thanks for the information.

I live about 2 to 3 hours from Phila. and NYC.  Baltimore and DC are about 5 hours away.  I'd be willing to go anywhere in the USA.  I even have a relative in Minnesota, so I've thought about the MAYO.  Has anyone heard anything about the McGee Center in Pittstburgh?  My sister was having her mammo yesterday and the tech said her mother had LCIS and went there. 

Thanks

Since you are able to access NYC, Perhaps Memorial SLoan Kettering? They have a high risk Breast Center. I also pursued them to re read my slides.
Also Johns Hopkins is a possibility.

McGhee Womens Hospital is good. I lived in Pittsburgh, and heard great things about it....but an NCI Cancer center would be really great for evaluation. Are they an NCI center?
Moogie

Hi everyone,

 Once again thank you. I did get in contact with the radiologist who said that my diagnosis has been changed to DCIS with lobular morphology.  I asked him if LCIS was still there and he said that it was unclear.  He said that they didn't find anything invasive yet and the cells were 80% Estrogen Receptive.  I was confused before, but now ....

The radiologist said my options have changed and I need to do my research and act sooner.  I definitely think that I need another pathology opinion since the results were so different.  He said the slides were sent from my lab  to Dr. Page at Vanderbilt University and he agreed with the DCIS with lobular morphology.  I was planning on seeing a medical oncologist, but he said it is more important that I see a surgeon and radiation onclogist.  He suggested a second opinion at Fox Chase or Sloan Kettering.  Has anyone else had the diagnosis change after additional stains?  What doctor should I see next?  Any opinions about Fox Chase or Sloan Kettering? 

Nala:
I have heard that there is someone at Vanderbilt who is a pathology whiz with breast stuff......

My diagnosis changed when my slides were re-read at the NCI place. Some of the pathology business is a judgment call. The more breast cells the place handles...the better.

A surgical oncologist specializing in breast cancer is the next step ,as your doctor advised. Medical oncologists are a different ball game.
Either facility suggested is great. I know many who have dealt with Sloan Kettering and have been pleased with treatment. Sometimes in a major center, the process is developed to move patients through the system with efficiency...and that can lack finesse. At Duke, there was also a level of confusion at first when I made my appointment...and I had to wait while my slides were reread. But places like this have people from all over the world travelling to them for consults, and the volume in my opinion is a factor.
Good luck!!! Both facilites are really good..so there is no wrong decision.
Moogie

Yes,,,,the Page guy sounds right to me! I researched him myself several years ago. Good for all of us to know that he is a mighty resource. I agree that the run of the mill pathologist does not have the vast experience of someone who specializes in breast diseases and pathology. The guy who does diagnostics only on Porsches, will be a better technician than the local mechanic if you've got one of these cars..........

A second opinion is a very valuable thing....and even if it means more effort...it is well worth going the extra mile,.
Moogie

I also got 3 opinions. I think if there is major surgery involved, that is not too many.
I set up all my " opinions" myself. After you get your treatment decision set for yourself, which is the most important thing....be sure that the plastics part of the equation is well researched before you decide. Certain types of reconstruction are less successful after radiation, and you want to know what your options are....even if you wait for recon.

My last plastic surgery consult was the one that I chose..after a sobering one before that!!! I realized it is important to have a surgeon you can feel good about, because you will be in reconstruction over the course of a year or more depending on your situation. The same goes for your medical oncologist..this person is in it with you for the long haul. WHoever is going to monitor you health needs to be the best support and advocate!
Moogie

Ask the surgeon directly of the excision will be " visually" bad. One said to me " you will have a poor cosmesis and it canot be addressed by plastic surgery". So then I asked: are you saying I will look like a deflated football?

Basically plastics does best when they get to start form scratch. If more that 1/3rd of your breast is going, probably mastectomy would give better cosmetic results. I have had a huge dent and a mastectomy. The mastectomy with reconstruction was easier to get used to and far less disturbing....
Moogie

janet, I understand your concern. I read before my first biopsy about the effects of repeated biopsies on the size and shape of the breasts. I did not want to be diminished piece by piece, although that is what has happened to a certain extent. I have had 4 biopsies on the right breast - 2 stereotactic and 2 excisional. That side is definitely smaller than the left which had only the 1 biopsy. However, it is not noticeable unless I am nude, so only moderately disturbing. I agree with Moogie that you should ask the surgeon directly about the amount of tissue likely to be removed. He/she may not be able to tell you, since things could change once surgery begins. Also, another factor is the size of your breasts now. Smaller breasts (like mine) show the loss of small amounts of tissue more. I don't know...if I were in your place, I might be thinking about the mastectomy as well. Why not go for a second opinion?

Anne