LCIS and excisional biopsy

When they did a core biopsy and found LCIS, there was some reason why they did that. Normally it was because there was something seen on a mammogram (such as microcalcifications), but they may have seen something on ultrasound or MRI or felt a lump.

As with almost everything else with LCIS, this too is controversial. But it seems like they've somewhat settled down to: they compare the imaging (or tactile feel of a lump) with the LCIS-revealing core biopsy. If there is ANY difference between the location found on imaging and the core biopsy location, they do an excision. Other people just recommend an excision in any event after they've found LCIS on a core biopsy.

What they do is they excise the area around the core biopsy. If the abnormality was seen on a mammogram, they often 'bracket' the lesion. They insert brackets (like fish hooks) into the breast to locate the lesion/core biopsy area. This is because obviously they can't do a mammogram while the surgeon is doing surgery. Then the surgeon excises the area between the brackets. I assume they would also do this if the lesion was found on MRI. (Since my lesion was seen on MRI in Aug 2017 showed ALH bordering on LCIS, I may be having a surgical excision in the next many months.)

I've never had an ultrasound excision, but I assume you could do that on the operating table (but I'm not sure).

On my initial LCIS diagnosis, my abnormal mammogram (due to microcalcifications) was done in late October, they tried to do an ultrasound biopsy in late November but couldn't see anything, they did a stereotactic mammogram core biopsy in early December, and I had the area excised in late January. If you look at studies, they differ with the study, but if the imaging and core biopsy locations do not match, about 20% of the time when they surgically excise the area they find DCIS or invasive cancer.

They took about 2 tablespoonfulls of tissue in my excision. (I have a B cup.) Its the decision of the breast surgeon how much to take. I did have a 'dent' for a few years, but it completely filled in over time, and by about 2 or 3 years, it was REALLY hard to see exactly where they did the excision. Your experience may differ; I've not seen any other women with breast excisions so I don't know what the 'average' dent or scar is like.

I had conscious sedation (midazolam (Versed) and propofol for my surgical excision, and once an anesthesiologist was involved (immediately before the surgical excision, after the brackets were inserted), it was totally fine (NO PAIN). This means that while sometimes I was conscious, I did NOT feel any pain. When I said 'Ohhhh', not in pain but more like asking what was going on, they gave me another slug of propofol, which put me out again.

However, before the excision, when they were inserting the brackets, I had a miserable time (pain 9/10 because I'm sure if they were pulling off my arm it would be more painful at 10/10), because they wouldn't let an RN be present so I couldn't have any opiate or anything by mouth because they were going to do surgery for the excision. Before they started the bracket insertion, they said I had to promise that I 'would not move a muscle' during the procedure. They did about 3 seconds with the equivalent of an ice cube, then inserted the bracket. It hurt so much, but I knew if I cried I would move, and would have to repeat the process. So I couldn't communicate with them how much it hurt. They saw my face and gave an injection of local lidocaine, which hurt as much as the bracket insertion, and didn't do a thing, then they hit the wrong place several times (you have several constant mammograms to make sure the bracket was at the calcifications), so had to pull out the fishhook brackets several times. Then, someone knocked at the door and asked if they could come in (I said yes because I didn't know what else to say), no one identified themselves, and about a dozen pair of feet walked in. (The room was adjoining the waiting room, so I had no idea if it was a family member of a patient who was looking for a bathroom.) I was dripping blood, and one person asked if I was in pain. Again, I knew if I said I was in pain I would cry, and if I cried I would move. There was the other issue of modesty since of course I was naked and had no idea who kept on entering and leaving the room; no one identified themselves. (I also work at that hospital, so some of these people could have known me professionally.) As one male co-worker later suggested, I felt like I was on display. I was so grateful for his understanding. (He is from a minority group, so I'm sure he understands being marginalized.) That understanding was healing for me. I wrote 2 letters to the radiologist, complete with Pubmed references and stories from bc.org on people who passed out during their procedure, or refused to get any mammograms for the next 10 years and subsequently got bc. That radiologist gave me a reply that 'he'd have to give sodium bicarbonate to everyone'. No apology. Sodium bicarbonate is 'supposed' to increase the effect of the lidocaine, but I've seen Pubmed papers that refute that. In any case, whatever he did did NOT NOT NOT NOT work for me.

I'm not sure how long the bracket insertion took, but it felt like about 1.5 hours. (I stole my mammograms, so I'm roughly estimating from the times listed on them. Now they do it all digitally, so you don't have to carry your mammograms around.) You are squished by the mammogram machine for about 90% of that time, not just momentarily as they do for routine mammograms.

I have a history of trauma, so I'm sure that upped my pain score a LOT. I did a survey here in about 2006, and most people rated their bracket insertion pain as a pain score of about 5/10 (not 9/10). When I had my last MRI-guided biopsy early last month (where obviously they inserted a needle to get the breast tissue), my pain score was more like 3/10.

Hope this helps,

leaf

Hi Kerri, just to give you another experience (not discounting leaf's at all...just giving you a variety of info), my excisional biopsy was not painful and not a bad experience. It was done to make sure that the LCIS was not lurking around invasive cancer. To help the surgeon identify the location of the marker from the needle biopsy, they inserted a J-wire with the aid of mammogram. They did have to take it out and reinsert it once, but I honestly couldn't feel much, so it didn't bother me from a pain standpoint, just more annoying having to go in and out of the mammo machine so many times. After the J-wire was placed (it extends out of your breast, so they cover it up so you don't have to look at it), the anesthesiologist put me under, and I was asleep during the procedure. Because I was leaning towards the BMX for the future, the BS consulted with my PS on incision location, and she was able to make it around the border of my aerola. It did make a visible dent (small breasted) that filled in over a few months. The biopsy showed extensive LCIS throughout the removed tissue, but thankfully no invasive cancer or DCIS. I Was glad to have the peace of min

I had a different experience. I'm in the UK. I had a vacuum assisted excision biopsy. I took advise as to whether this procedure was appropriate for LCIS from a leading breast surgeon who told me that yes so long as it was a consultant doing it.

I was sitting in a chair and there were several people present in the room and the procedure was done by a consultant radiologist. The pain was not dreadful but I was shocked by the machine which (sorry) just reminded me of a road digger. I didn't like what was happening and the fear made it all worse. It is normal apparently to hit a blood vessel from time to time and they are used to this and can deal with it but they didn't tell me beforehand and I got extremely scared thinking they might have punctured a lung. I think it if had had more information I might have found the whole thing perfectly manageable. As it was I tolerated it but not without quite a bit of shaking and swearing afterwards. It can be hard with a vacuum assisted biopsy to get all the LCIS out but of course they are not really aiming to do that, they are trying to look for anything else that might be lurking.

Lots of people on here have spoken about how actually LCIS doesn't need to be removed because the abnormal cells are contained/in situ. I get that but - and this may seem daft - when you have any kind of excision that doesn't remove all the LCIS then doesn't the tissue get disturbed and the 'rogue' cells 'let out' to do damage elsewhere? I have this fear that during the excision biopsy I had that some of the LCIS was removed but due to the damage to the delicate structures the rest of the LCIS may be who knows where and spreading. I hope that's an unfounded fear....

thank you for posting those articles. They are very interesting. I had core biopsy with vacuum and it was pretty pain. The lidocaine did not work. They thought I had DCIS but I had Lcis which later turned out to be pleomorphic lcis with a small area of invasio

it was found during both biopsy and lumpectomy. I had microcalcifications on mammogram. No lump. The LCIS can turn into cancer, just more slowly. They said my LCIS turned pleomorphic which is what caused the microcalcifications. I went to IU Med center where I got the correct diagnosis. The pleomorphic LCIS is aggressive and commonly invades about 60 percent of the time. It invaded and was then pleomorphic lobular carcinoma. Only a small area 1 mm. They didn't do wires or hooks or sentinel node because they misdiagnosed it and that it was non invasive DCIS. I insisted on a second opinion because the margins weren't clear if it was DCI

I SHOULD have yelled and screamed. I SHOULD have said 'I'm not following your rules because this is intolerable!' One friend of a friend who had the same procedure that I did at another hospital called it 'barbaric', and I agree (for ME.) I certainly hope if it happens again I will be brave enough to say 'Enough!' I've considered bringing a bell or a shaker or something to ring if it gets too bad.

What is REALLY bad is that if they make a procedure too awful, then people will refuse to have it done. One woman on this site said that after she went through it, she stopped getting mammograms, because obviously they aren't going to biopsy/excise you if you aren't getting breast cancer screenings. Then, when she started having symptoms 10 years later, she finally did have a mammogram, and had advanced breast cancer. Now THAT'S a PREVENTABLE tragedy.

I know this is absolutely nerve wracking. No, you're certainly not alone.

I will support whatever choice you choose, because everyone is different. Your choice should be at least partly based on how you feel about the different alternatives. Only YOU know how much your breasts mean to you, what the pros and cons of mastectomies are, etc. But you should also know how WELL they know the risk numbers that they give you. I want to let you know about those number because I didn't know until several years after I was diagnosed.

I think it is also good to get as much information as you can about your actual breast cancer risk. I just threw my numbers into a Tyrer-Cusak risk model and got a number of 53-56% (depending on if I have Ashkenazi Jewish ancestry, which would be evaluating my um-great-great or great-great-great grandparents.)

While there are several different breast cancer calculators, I just found a powerpoint slides on a 2016 lecture on breast cancer calculators. https://www.sbi-online.org/Portals/0/Breast%20Imag... especially pg. 23-24. Pg. 52 has info on which risk calculator they recommend for different conditions.

No matter what number you get from the calculator, do look at what is called the C-statistic. In clinical studies, the C-statistic gives the probability a randomly selected patient who experienced an event (e.g. a disease or condition) had a higher risk score than a patient who had not experienced the event.

• A value below 0.5 indicates a very poor model.
• A value of 0.5 means that the model is no better than predicting an outcome than random chance.
• Values over 0.7 indicate a good model.
• Values over 0.8 indicate a strong model.
• A value of 1 means that the model perfectly predicts those group members who will experience a certain outcome and those who will not. http://ibis.ikonopedia.com/

The very BEST model in terms of C-statistic is the BODICEA model, which was 0.77. The Tyrer-Cusik was 0.74. This is indeed better than the modified Gail model which was about 0.59-0.66 (the higher number when they added breast density, etc) or so.

So this means, with the Tyrer-Cusik model, about 3 times out of 4, the model will predict correctly (whether or not you get breast cancer), and in about 1 out of 4, the model will be wrong. Some of the models do have caveats, and should only be used in certain populations.

Notice, also, that your risk decreases with age, because by definition you have lived more years without breast cancer than a younger woman.

Best wishes,

leaf

Well, the Gail model, besides excluding you for LCIS, does not have a very good C-statistic. In this article, even when they added in breast density, etc, it gave a C-statistic of 0.66 (for the 'average' woman in the USA, who of course does not have LCIS.) https://academic.oup.com/jnci/article/98/23/1673/2...

There is also the Hall's breast cancer calculator, but it hasn't been Peer Reviewed, or, as far as I know, compared to LCIS populatons. 5-10 years ago, I got estimates of up to 80 or 90% from the Hall's calculator (and I gulped!) http://halls.md/breast/risk.htm, but I just stuck my numbers in now and its ~52%.http://halls.md/breast/risk.htm (Obviously, I'm older than I was in 2006, so I have more years of NOT having breast cancer.)

As far as I know, there aren't any other breast cancer calculators (besides the ones listed in https://www.sbi-online.org/Portals/0/Breast%20Imag..) So if your surgeon comes up with a radically different number, then (s)he is basing that on 'expert opinion', not a model.

At the time (2006) my oncologist gave me a breast cancer risk of something like 30-40%. I went to a NCI-certified tertiary cancer center, and they said 'somewhere between 10% and 60%, but probably closer to 10% than 60%'. (Remember the risk of the 'average' woman in the USA is something like 13%, and NOBODY I had heard of before said LCIS puts you at LESS risk of breast cancer!)

Now, normally, I am going to do something different if my risk is 10% vs 90.%. That's when my GP hinted that they really don't know well about your risk of breast cancer, and I found the info above.

Do look at all the risks and benefits of all of your options. Read the surgical forums, the antihormonal forums, etc. Know that people are more inclined to post if they have a bad outcome than a good outcome. Try to get the risks of adverse reactions of different outcomes, and take your own personal situation into account.

There is NO right or wrong answer, no matter how many people choose option X. There is only the best answer for YOU- you are an individual.

_____

Commenting on the topic of LCIS and excisional biopsy: By the way, in Sept 2017 I got a MRI core biopsy in my R breast for ALH. In Up to Date (a standard reference), it says the 'standard of care' is to excise ALH when ALH is found in a core biopsy. (I am going to a general surgeon because I can't stand my 2006 breast surgeon. The general surgeon I really wanted is on medical leave, so since the procedure is straightforward, I'll have it done by him and followed up by someone else.) Hopefully, I will have this ALH excised in the next few months.

Removing the entire area was one of the best decisions I took in my life, otherwise the cancer would have stayed there and kept growing and probably continued to be missed in future biopsies until it was bigger or had turned to invasive.

I am glad that you got the area removed. But LCIS is a strange condition. LCIS is almost always multifocal (meaning there are multiple spots of it in a breast), and often bilateral (meaning its often in both breasts.) So, its almost impossible to 'remove all the LCIS' (even with a mastectomy) because you don't reliably know where it is without removing it and looking at the tissue under the microscope.

While they think than SOME LCIS can eventually devolve and turn into invasive breast cancer, they think that other LCIS will just stay the way it is now and not progress, AND sometimes LCIS women get DCIS and/or invasive breast cancer in areas of the breast that looked totally normal in imaging. (Obviously they can't be SURE there was no LCIS there without removing that area.) But some invasive breast cancers that LCIS women get ARE genetically related to their LCIS, while other DCIS/invasive breast cancers are NOT genetically related to the LCIS. In fact, most invasive breast cancers that LCIS women get are IDC. LCIS women get more ILC than the 'average' women who gets invasive breast cancer.

So they think that Sometimes LCIS is a marker for some unknown risk factor that puts a person at increased risk of breast cancer, and Sometimes the LCIS itself does NOT go on to become breast cancer.

There's a lot we don't understand about breast cancer in general and LCIS in particular.

Hi Nicola. I have LCIS, still present, after having an ILC/IBC mass removed by lumpectomy. My understanding is that tamoxifen or AI reduce the risk of LCIS turning into actual cancer. Radiation may also help do that as well. So I don't think treatment can "return the cells to normal" but it can significantly reduce the odds they mutate into invasive cancer.

@NicolaSue, I might have an answer to that question, based on my personal experience. A year ago I decided to conduct a micro clinical trial of one to see if my LCIS cells could be reduced or eliminated by a course of an anti-malaria drug (Chloroquine 500 mg/week for 4 weeks, combined with vit D3, as per this DCIS study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3779365/ ). Result: my next MRI report described my original LCIS area as "less conspicuous". Now, to be fair, after having finished the course of Chloroquine, I started TAM and took it for 2 months prior to that MRI. But I've never came across information about TAM reducing LCIS areas, so I concluded that Chloroquine did it.