LCIS

I was diagnosed with an infiltrating lobular carcinoma tumour of 4 cms. last year. This is worse that the in situ one you have. I also had foci of LCIS in the rest of the breast.  It had also spread to the lymphnodes.I was also told about the possibiblity of it showing up in the other breast, but chose to only lose the one . I had hectic chemotherapy for 6 months and finished that in Feb. Now I am busy with reconstruction with a  tissue expander. I was told as long as a close watch and mammogram and ultrasound were done often, it was fine. My breasts were also very dense and difficult to read on mammo.I am now on Tamoxifen as well for 3 years as i was oestrogen receptor +.

Hello tt214

I was in the same situation as you: LCIS in the left breast and it sounds like you also had an invasive component?  Initially, I thought I would just do radiation after the invasive cancer was removed until I met with the radiation oncologist who showed me a new study that suggested that consideration should be given to excising all of the LCIS. The surgeon couldn't do that as it was scattered throughout the breast, so I had the bilateral.  I'm 42 with a small child and I didn't want to have endless monitoring.  If I was older, I might have made a different decision.  Get as much information as you can and then go with your gut.  Good luck to you. 

tt214--to find the LCIS section of the boards, go to the main Community Knowledge Exchange page where you found this High Risk board, and scroll halfway down the page to the section "Connecting with Others with Similar Diagnosis". LCIS is the second board topic under that, and a little further down in the same "Connecting" section is the ILC board. If I were clever I'd post a link to the sections, but I'm not. Let me know if you can't find it.

tt214--I was diagnosed with LCIS over 4 and a half years ago and also have family history of bc (mom with ILC). I am very closely monitored with MRIs alternating every 6 months with digital mammos, frequent breast exams, and take tamoxifen to try and prevent an invasive bc in the future. So far, all the scans have been negative.  Feel free to PM me if you have any questions.

Anne 

tt214



Sorry it took me so long to get back with you. You asked how they knew my LCIS was scattered. My surgeon said she thought the LCIS would be scattered because it usually is. Also, the initial biopsy/lumpectomy did not have clean margins for the LCIS. Then, the pathology report after the mastectomy proved her right. It is such a difficult decision. You have to do what is right for you. I drove myself crazy also, so I understand. Good luck to you. You will get through this time. Lolita

tt214- I think they know that most LCIS (and nothing worse) is usually multifocal and often bilateral because before about 1990 (roughly), the routine treatment for LCIS (and nothing worse) was bilateral mastectomies, and they could look at the mastectomy specimens.





But for LCIS (and nothing worse), that issue is often moot because even *if* you have LCIS (and nothing worse) in one spot in one breast, it puts BOTH breasts at work. Often LCIS is found not *at* the 'suspicious lesion' that prompts biopsy, but next to it. LCIS is a strange animal.





Your situation may be different because you have both invasive and LCIS. I have seen papers that opine that for women with invasive + LCIS that lumpectomy + rads are fine, and other papers that opine that bilateral mastectomies should be done. So it sounds, as in almost all things LCIS, there is controversy.





This means that there is no wrong choice, there is only the right choice for YOU. It is a difficult decision.





Leaf (LCIS, ALH and nothing worse)

Please disregard the above...Rachel6532 !

Hi:  I have two sisters with breast cancer and I am BRCAII positive.  I chose to have dbl masectomies.  The biopsy afterwards found lcis. I made my decision that if I was BRCA positive I would do the dbl masectomies for the following reasons:  I am risk adverse (I don't gamble or buy lottery tickets); I did't want to worry and have close monitoring only to catch this "devil" soon bc then I would still have the surgeries under a rushed situation and then still have chemo and rads; I didn't ever want chemo and/or rads; I didn't want to loose my career with long term health concerns; I was tired of worrying. 

     So, am I happy with my choice?  Absolutly.  Everyone has different histories, both personal and health, but I thought if you heard from some of us as to our decision tree (a decision tree is a diagram of choices and outcomes) you might be able to articulate your own rational for yes/no to the surgery. 

    The surgery was not difficult and I was back to work in under two weeks.  The reconstruction was not difficult and I was back to work in under two weeks.  ( I am self employed and can't afford to miss much work and I am the sole support of my family) Because I had the surgery without a diagnosis of bc they kept my nipples and aureola (still controversial so research that--- I was told that my risk was increased by 2% and I was comfortable with that increase in exchange for very, very, very  normal looking breasts).

You are in the right place to gather information to make this decision.  Read othes who chose to monitor their breasts and no surgery as many are satisfied with that choice. Prayers are with you.

Hi,

Just wanted to share that I was dx with LCIS in r breast and went with bilateral mastectomy w/expanders placed at same time.  I had sterotactic bx, then wide excisional biopsy and also 4 core biopsies in each quadrant.  All biopsies came back with LCIS.  Since it was found "all over", I made the choice for mastectomy rather than monitoring.  I constantly asked "What if you just didn't biopsy the section that is invasive?"  And, of course the doc said "Well, we can't really know that unless all of the tissue is removed".  It turned out there was a microinvasion...very small, but I was relieved because the possibility that it would have grown was a concern.  I've had the exchange surgery and I'm ok with the outcome.  I'm very thankful that things have gone well, I'm getting back to normal exercise etc..and getting used to the new me.  I go back to ps in Aug to plan nipple reconstruction and I'm hopeful that with that procedure and the tattooing, I'll be even more pleased with the outcome. 

Have you made any decision for yourself yet?  I know it can be consuming and difficult to find lots of info, but hopefully you'll get your questions answered here.  Trust your instincts!  Best wishes.

Hi, Bonita, and welcome. As you are finding out, LCIS is a very confusing diagnosis. I was diagnosed with it in 2001.

Most doctors do think that LCIS is not cancer, but rather a marker for increased risk of developing invasive cancer. However, there has been some recent research that seems to indicate that in some cases, LCIS may be a non-obligate precursor to invasive cancer. This means that sometimes, LCIS may give rise to invasive cancer, but it does not always do this (it's "not obligated" to). Much more research is needed, of course, but some doctors now do consider LCIS to be a non-invasive form of breast cancer. I have one doctor who thinks this way, and others who do not. So it is very confusing!

LCIS is sometimes called "lobular neoplasia," for just the reason you mentioned--to avoid confusing it with actual cancer. I am not sure how well this name has caught on. All my doctors, including my oncologist, use LCIS. But if you see "lobular neoplasia" on a pathology report, you'll know that it is another name for LCIS.

As far as prophylactic bilateral mastectomy (PBM) goes, I have never heard that women must have their ovaries out if they have a PBM. It is true that women with mutations in BRCA1 and BRCA2 have a higher risk of both breast and ovarian cancer, so those women might elect to have both surgeries. But I don't think that women without the mutation necessarily must have their ovaries removed. This would be something to discuss with your doctor. If you don't understand what they are telling you, please let them know. It is their responsibility to communicate clearly with you and to explain any medical terms.

Research has been done to determine whether PBMs do in fact reduce the risk of invasive cancer, and it has been found that they do. I am not sure about the women in the TV special you saw, but this issue has been studied and it is true that PBM's do reduce the risk of invasive cancer in very high-risk women. I am considering this option for myself and will see a surgeon tomorrow.

It's good that you are going to a high-risk center. Living with LCIS is not always easy, and it's so important to have doctors who understand the disease and its implications. I'd also like to invite you to visit the LCIS forum on these boards. There are some really knowledgeable ladies there who are so helpful.

I wish you all the best.

There is controversy about just about everything about LCIS. One of the reasons many people continue to use the term LCIS, I think, is because of the prominence of the pathologists who first identified it in the 1940s. (It is also shorter to write LCIS than lobular neoplasia.)





I think the most common number I see thrown around is that LCIS (and nothing worse) gives a woman about a 0.5-1% per year chance of breast cancer. That means the risk over 5 years would be about 2.5-5% and the risk over 20 years would be about 10-20%. We don't know if risk factors are additive. That means that I have not seen any studies of LCIS (and nothing worse) women, for example, who also have a bad family history. Say you take the time frame of 20 years. *IF* the risk of LCIS was 15% over 20 years, and the risk was 30% for the bad family history over 20 years, then I have seen no studies that say the risk for LCIS (and nothing worse) women with a bad family history have a 45% risk over 20 years. They could have a risk of 15% or 30% or some other number. That's why its important to compare prediction models to the population.





There is also the statistical problem of whether these risk factors have any application to YOU, as an individual. They did one study of the modified Gail model. They took a group of women with and without breast cancer, and looked at their modified Gail model scores. If the model worked perfectly, each individual woman with breast cancer would have a higher score than an individual without breast cancer. In this study, they randomly picked one woman with breast cancer and compared her Gail model score with that of a woman without breast cancer. 59% of the time, the woman with breast cancer got a higher score, but 41% of the time the woman WITHOUT breast cancer got the higher score.



http://community.breastcancer.org/topic/47/conversation/692321?page=1#idx_8





It is true that probably PBMs *do* decrease the risk of breast cancer in LCIS women compared to LCIS women who have* no* treatment (besides screening), but I have not seen any studies about this. I certainly have seen no studies that compare PBMs and hormonal prophylaxis (tamoxifen or raloxifene) with or without no treatment (besides screening) for LCIS (and nothing else) women. The only information I have seen about hormonal prophylaxis in LCIS women have been subsets (hard to find the data) of a much larger high risk population.

Once, somewhere, I found some data raw data where 2 out of a population of LCIS women with BPMs got breast cancer, but I can't remember where I saw this, and I may be remembering wrong. I think the numbers were way too small to do anything statistically.





It is all an individual choice. Science gives us no clear answers. Feel free to visit the LCIS board below, as lucky32 has said.

Leaf

I just joined this board tonight.  I was dxd with LCIS & atypical hyperplasia in my right breast on April 23 after an excisional biopsy.  I also have dense, hard to read breasts. The next step I took in gathering information was today - I had pictures taken with a breast gamma camera. The procedure is called "Breast Specific Gamma Imaging." Has anyone else had this? 

It's supposed to give a complete view of breast tissue - not a replacement for an MRI, or mammogram, but additional information.  My doctor said it will help us know what else is going on in both breasts - where the excisional biopsy wasn't.  I will still be considering my options - from watching to mastectomies - as i gather more info (genetic counseling, etc.)

othershoe,

I have read about the BSGI in a women's health newsletter, but have not heard of any place around here offering it. I wonder whether insurance will pay for that?

I started this trip with a dx of ALH in one breast in 2006, and then LCIS was found in the other breast in 2007. I also have "extremely" dense breasts. I totally understand why you call yourself "othershoe." That has been my philosophy about LCIS all along - when will that other shoe drop? I hate waiting for it.

Anne

Hi, Peaches & AWB -

I do think my insurance will pay for it. I believe if your doctor orders it, it will be paid for. Yikes. Hope so. Will let you know.

Had really disappointing call with nurse with test results on Friday. I usually have great respect for those in the medical profession - esp. those that take care of me - but this nurse did not seem to understand at all the results she was passing on from the Breast Specific imaging.  I won't bother you with the details - it's not good or bad, I just don't think she had a clue what she was reading  - so I will talk to the doctor tomorrow or the next day and report back. Stay tuned.

And finally - thanks for the dance note, AWB. I've taken that to heart since you shared it with me.  I think I talk about waiting for the "other shoe" to drop more when I tell friends what's going on. They are so alarmed to hear about LCIS + the atypical hyperplasia, so to reassure them I explain that I've had problems with my breasts since I was 21  (I'm 44) so that really... it is something that I've been kind of expecting in the back of my head forever. I don't think this will make it easier for me personally - I'm just trying to keep everyone calm, until I have more information myself, and can internalize what I feel about it all. 

Thanks for being out there, wherever you are. Makes a huge difference, doesn't it?

-Shoe