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Topic: LCIS and excisional biopsy

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Oct 10, 2017 01:46AM

Kerri_Oz wrote:

I was just wondering how common it is for an LCIS dx to lead to an excisional biopsy? If it does, what is taken? From what I've read, LCIS can't be seen on any of the screening tests, so how do they know what to excise? Mine was found in a core biopsy of an area of microcalcifications, so if I do need an excisional biopsy, would they take the entire area of microcalcifications? I have minimal breast tissue (surgeons words, not mine, tho they are pretty small), and if the 50mm area of calcs was taken, it would be a quarter of my breast. Also, are excisional biopsies normally done under local or general anaesthetic?

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Oct 10, 2017 04:19PM - edited Oct 10, 2017 04:42PM by leaf

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




Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 10, 2017 10:15PM Kerri_Oz wrote:

Oh, Leaf, you poor thing. What a terrible experience. It sounds like some very unprofessional, if not downright unethical, behaviour on behalf of the radiologist and everyone else involved. I would be horrified if there were people coming in and out whilst I was having a procedure like that. I am hoping like hell that I don't have to have an excisional biopsy. The mammogram guide core biopsy was bad enough and is something I never want to go through again. I found it all very traumatic. The idea of those brackets makes my blood run cold.

OK, so I've just done some more reading on the forum, and it's looking like I won't be able to avoid the excisional. Holy Mother of God ... how am I going to deal with that? I feel sick. If you wanna stick a needle in my vein and put me to sleep, I am absolutely fine with anything you want to do with me afterwards, but getting procedures and stuff done while I'm awake is a nightmare for me. I think it stems back to having complications when I had my tonsils out at 5 years of age. I know I certainly feel like a terrified 5 year old whenever I need something done.

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Oct 11, 2017 01:06AM cyclegal wrote:

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

Dx 2/2017, LCIS, Right Surgery 5/9/2017 Lumpectomy: Right Surgery 8/24/2017 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Oct 11, 2017 02:25AM Kerri_Oz wrote:

Thanks, cyclegal. I am such a complete baby when it comes to procedures. I tell myself to put on my big girl panties and just get on with it, but it doesn't help at all at all. Did you eventually go on to have a BMX? (I'm guessing that's a bilateral mastectomy?) That is something that's been on my mind for the last 5 months or so (well before the LCIS dx) because of other risk factors, and now it's seeming like an even better option.

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Oct 12, 2017 03:46PM NicolaSue wrote:

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....

LCIS diagnosed Spring 2017. Finding my way slowly.
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Oct 12, 2017 05:34PM - edited Oct 12, 2017 05:45PM by leaf

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....

All LCIS cells by definition are contained within the lobules/ ducts which are surrounded by the basement membrane. (To clarify, you can have 'pagetoid spread into the ducts' - which I have - so the LCIS cells also are partly in the duct too. Pagetoid means the cells look like soldiers standing in a row.)

You have asked a VERY valid question. It is totally reasonable to ask - as you say, can 'go rogue', and metastasize. (This is also called seeding.) Well, what you probably REALLY want to know is if the cancer cells are moved during a biopsy, can they survive and continue to grow?

During a biopsy, the cancer cells certainly CAN be moved and found along the biopsy tract. But the question is - do these cancer cells survive?

This can be a very difficult question to study. If you biopsy a cancer, and later it metastasizes, how do you know that it was from the biopsy, or whether the cancer would have metastasized anyway? I've read papers that claim that IF an invasive breast cancer is going to metastasize, it often metastasizes YEARS BEFORE the initial (primary) breast cancer can be detected. So _if_ that happens, then how can you tell if the rogue cells got there 'naturally' (in other words, that's what the cancer was going to do anyway regardless of whether or not you biopsy it), or if the rogue cells got there because they were disturbed by a biopsy/excision?

There are also some other considerations:

a) Most doctors are NOT going to give you chemotherapy or radiation therapy unless they KNOW you have cancer because these treatments normally have some moderate to severe adverse effects (not to mention expense).

One of the papers below said that in one group that about 9% of people with pancreatic cancer (which is VERY deadly) had surgery and they found the pancreatic lesion was BENIGN. (Pancreatic cancer surgery is VERY extensive: its like a major re-plumbing of your GI system. I've heard that people can take 6 months to recover just from the surgery, and this 6 months is the lifespan of many people with pancreatic cancer after they get diagnosed. These numbers may be rather old and off by a few months,but you get the idea.)

Most breast cancers are diagnosed by pathologists looking at a piece of tissue under the microscope.

b) Often/almost always, if the do find a breast cancer, they give treatment to the biopsy tract. So for example, if you have invasive breast cancer, normally they give you radiation with or without chemotherapy with or without excision, which will not only effect the tumor bed, but also the biopsy tract.

Well, probably IF seeding occurs in breast cancer, it probably occurs at a VERY low rate. I've read papers that speculate that many breast cancer cells normally need some hormones to grow, and this doesn't happen when they are disturbed. It is certainly true that what happens in tissue culture (in a plate or flask) does NOT necessarily happen in a person.

I think that LCIS cells look less wild than invasive breast cancer cells, so I think one could suggest that LCIS cells aren't 'wild' enough to metastasize???

This is very hard to study, but it looks like IF it happens, it happens very rarely. Probably there's some controversy too.

Gotta go catch some zzzzzzs....Best wishes

https://community.breastcancer.org/blog/what-my-pa...

https://newsnetwork.mayoclinic.org/discussion/mayo...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC40151...


Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 12, 2017 07:31PM Mandycat wrote:

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

Dx 4/11/2017, Right, <1cm, Stage IA, Grade 2, ER+/PR- Surgery 5/1/2017 Lumpectomy Hormonal Therapy Arimidex (anastrozole)
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Oct 14, 2017 05:33AM Kerri_Oz wrote:

NicolaSue - from my understanding, an excisional biopsy for LCIS is never intended to remove all the LCIS or get clear margins. It all about taking enough to make sure there isn't anything more sinister hiding within the LCIS. LCIS is not cancer has has been disproven even as a precancer, so spreading along the needle track would not be an issue (I think). It is often multifocal (in more than one place) and bilateral (in both breasts). To remove it all and get clear margins, one would need a double mastectomy. On it's own, LCIS won't cause any problems, but closer monitoring is called for as someone with LCIS is more likely to go on to get cancer, often in a totally different place from where the LCIS was found, and often in the ducts, not the lobules. In my case, because the LCIS was found in an area of microcalcifications, I imagine that if I did have an excisional biopsy, the aim would be to remove the whole area of microcalcifications. If the LCIS was found in some sort of lump or cyst, the idea would be to remove the entire lump or cyst. Also, I think you had a vacuum assisted core biopsy, like I did. An excisional biopsy is when they cut you open and excise (cut out) a whole area. There is also an incisional biopsy, where they only cut out part of the area for testing. (I've been reading up ... lol).

Leaf - you are so knowledgeable! It is wonderful that you stick around on here to help all us newbies understand more. Thank you so much :D

Mandycat - was the pleomorphic LCIS found during the biopsy or lumpectomy? And what was the invasion of? Was it ILC or IDC or something totally different? Did they get clear margins first time around? Are you clear now? What was it that prompted the biopsy in the first place? Did you have a lump? Did you have to have wires or hooks put in before the lumpectomy so they'd know what to cut out? I hope you don't mind all these questions.

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Oct 15, 2017 05:51PM Mandycat wrote:

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

Dx 4/11/2017, Right, <1cm, Stage IA, Grade 2, ER+/PR- Surgery 5/1/2017 Lumpectomy Hormonal Therapy Arimidex (anastrozole)
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Oct 15, 2017 09:02PM panthrah wrote:

leaf... I commend you for staying still and tolerating that. there is zero chance I would have been silent about it. and everyone within ear shot would have heard my expletive filled thoughts about what they were not doing. I might have even told them, to kiss off and left. I have a pretty decent pain tolerance but if they are banking on someone just "dealing with it" ... oh hell no. My last excision (x3 this aug) .. wire is in.. they said " light compression mammo" .. they started...i loudly explained "light compression my a$$" all she did is say " dont move" .. when done i glared at the tech.. and pointed to the pinch marks ... " what part of that was the light compression" she rolled her eyes and left. .....this is why they need to feed me or drug me before procedures . I cant guarantee I will be doing this/ going through this again.

( but to answer the posters question.. surgery was great, healing as been great, swelling is gone, no dent.. all is well )

Dx 7/14/2014, LCIS, Both breasts, 4cm, 0/0 nodes Surgery 9/2/2014 Lumpectomy: Left Surgery 5/1/2015 Lumpectomy: Right Surgery 8/14/2017 Lumpectomy: Right
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Oct 18, 2017 07:33PM leaf wrote:

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.

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 15, 2017 07:32PM - edited Nov 15, 2017 07:37PM by NubNet

I was just diagnosed with pleomorphic LCIS stage 0 after a lumpectomy that removed an area of 4 x 3 x 3cm from my left breast. We had been following that area for seven years, I had 10 biopsies, all negative, showing only a papilloma, ALH and ADH. I got tired of having the biopsies, wanted to be proactive and asked the BS to remove the entire area, and boom, they found a papilloma and a .5cm malignancy with clear margins. Initially the BS said my choices were HT with either RADS to affected side or MX, but the next day he went to a seminar about pleomorphic LCIS and called me stating that currently there is not recommendation for RADS for that because there is no data to support the benefit of it for my type of cancer and cancelled my appointment with the RO. He said LCIS is not really cancer, but pleomorphic type is cancer and behaves more aggressively than CLCIS. I had thyroid cancer 12 years ago, am cured and thought I was done with that, but now I feel I am starting all over again. My BS said if I do nothing else, I have about 30% chance of developing either another LCIS or ILC in either breast in the future, but if I take HT the chance drops to 15%. Every woman has a lifetime chance of 12%, and if I do a BPM, that chance drops to the single digits, about 7%. The emotional stress of being diagnosed with cancer is horrible, I am waiting for the results of the genetic BRCA1 & BRCA2 tests and will be getting a second and third opinion (both already scheduled) to help me decide if I keep my breasts or not, being that I would have 3% more of a chance than any other woman to develop breast cancer again. I know there are risks involving BPM, but I do not know if I can go through this emotional roller coaster again, I was very lucky they found the cancer in its very early stages, but I may not be next time.

Dx 11/3/2017, LCIS, Left, <1cm, ER+/PR+
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Nov 15, 2017 10:40PM Kerri_Oz wrote:

I hear you, NubNet. Luckily my LCIS is not the pleomorphic type, but I have a load of other risk factors. The IBIS risk calculator puts my lifetime risk at about 64%, which is not a figure I like at all. I can't imagine going through all that for 7 years, especially after the thyroid cancer. What a horrible journey you've had! I see my BS next week and am hoping that he agrees to BPMX straight away without wanting to do an excisional biopsy. Since I started this thread, I've had an ultrasound on both breasts, which showed up 2 masses, one in each breast totally separate from the previous biopsy site, which I had biopsied. There's all sorts of benign changes happening in both my breasts, all of which I've been told are no reason for concern, but on top of everything else, this shopping list of things raises my anxiety to the next level. And the info on the internet is all so confusing and conflicting. Weighing up the risks of surgery now against the risk of doing nothing but watch and wait, I think I much prefer the known risks of surgery. At least if I have it done now, before I actually have cancer cancer, I can keep my lymph nodes intact and won't have to worry about chemo or rads. My poor mum is struggling horribly with lymphodema since her mastectomy with the removal of (I think) 3 nodes, and we all know how horrible the side effects of chemo, etc. can be.

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Nov 15, 2017 10:44PM Moderators wrote:

Welcome, Nubnet. You hit the nail on the head when you called this an emotional roller coaster. Just know you're not alone, and we're all here to support you through this. Please keep us posted on how your other appointments go!

The Mods

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Nov 17, 2017 11:20AM - edited Nov 18, 2017 10:47AM by leaf

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

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 17, 2017 07:28PM Kerri_Oz wrote:

Thanks for the info, Leaf. As usual, you have a wealth of knowledge. I tried the Boadicea thing, and could get no further than putting in that my mum had bc. Then I tried the Gail model, and it refused to calculate for me because I have LCIS, so the only one I can go on is the IBIS/Tyrer-Cusik one. If I take out the LCIS for the Gail model, it still gives me an almost 3 times higher risk, but it does miss a lot of parameters that the IBIS one includes, like the LCIS and extended family with bc such as grandmother and aunt. I guess I just have to wait and see what the surgeon says on Thursday.

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Nov 18, 2017 10:19AM - edited Nov 18, 2017 10:27AM by 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.


Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 18, 2017 05:34PM Mandycat wrote:

hi Nubne

I also had pleomorphic LCIS. I had a small microinvasion. One MO recommended no rads just wait and see and the other recommended rads. A third then also recommended rads. So I got 16 treatments after lumpectomy. I have thought about BPMX but haven't done it yet

Dx 4/11/2017, Right, <1cm, Stage IA, Grade 2, ER+/PR- Surgery 5/1/2017 Lumpectomy Hormonal Therapy Arimidex (anastrozole)
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Nov 19, 2017 09:40PM Kerri_Oz wrote:

I just did the Halls calculator and it said lifetime risk of 85%. A bit higher than the IBIS, but it just confirms for me that the best way forward for me is BPMX. I've felt this way for a good while now. I've found the Moose and Doc articles really informative and helpful through this journey so far, so would tend to trust a calculator mad by Doc Hall.

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Nov 20, 2017 09:13AM - edited Nov 20, 2017 09:19AM by NubNet

You are right about the Internet, the first thing my doctor told me after giving me the bad news was not to go to the Internet, except to American Cancer Society website or the breastcancer.org because there is a lot of inaccurate and confusing information out there.

The irony of it all is that I used to be an x-ray tech for 11 years and five of those I spent doing exclusively mammography. I have seen a lot of breast cancer and was always very compassionate towards the women going through it, but I never thought one day I was going to be on the other side of it. Another irony, for the past seven years I was alternating mammograms, ultrasounds and MRIs every six months, and most of the time they came back as suspicious on the same area, thus all the biopsies, the last one on February 2017, also negative. The mammogram and ultrasound right before the excisional biopsy came back normal. I have to confess that I was surprised with the pathology report, I thought the results were going to be just like the other ones. Up until the dreaded diagnosis, I did not know that LCIS sometimes cannot be seen on tests and is found by chance, unless you have a lump to go after, and when you biopsy or remove the lump, you find it lurking next to the area. In my case it was a separate area next to the papilloma. 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 just got the genetic test results, they were all negative, yay!

I went to the MO's (saw two for second opinion), they both stated LCIS (even pleomorphic type) is not considered cancer but a pre-malignancy condition because of the way it behaves since it is slow growing and contained. The fact that mine is pleomorphic, puts me at an even higher risk of developing invasive breast cancer. I had conflicting information since my BS said that type is cancer. Both MO stated no RADS for this type. One of them said BPM is overkill, the other said I should not decide anything right now in this state of mind, I have time to decide when the dust settles because there is no immediate risk, but in 10 to 15-20 years, if ever. I got upset with my BS because they both said that usually when atypia is seen, which had been my case since at least 1/2016, they go back in to remove more tissue to make sure there is no cancer around the area, but the first time that was seen on my pathology report, my doctor said nothing about that, just that we would keep a close eye on the area, I was the one who asked him to just remove the area out because I was tired of biopsies. Both also said I should start HT, one of them listed all the different medications, explained in detail their rate of efficacy, possible side effects and risks and in which case to take them e.g. pre, peri, or post menopause. She is going to get a copy of the pathology slides to have another pathologist look at it to confirm the diagnosis and get copies of all my biopsy reports over the seven years they have followed the area. The other said nothing, just that Tamoxifen would probably be the best for me. I am going to have a hormone level blood test so the doctor can figure out which medication is better for me. HT is usually taken for five years, and keep working for another five after you stop it. I have also scheduled an appointment with a psychologist to help me cope with anxiety and the overwhelming feeling of being diagnosed yet again with cancer. One day at a time...

Dx 11/3/2017, LCIS, Left, <1cm, ER+/PR+
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Nov 21, 2017 02:46PM leaf wrote:

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.


Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 21, 2017 09:49PM Kerri_Oz wrote:

This whole LCIS/PLCIS is such a grey area, isn't it! So much conflicting and confusing information. My LCIS was only found thru a steroetactic core biopsy done to investigate an area of calcifications.

I'm glad your genetic tests were negative, NubNet. That's one thing you don't have to worry about anymore, and is at least something that can't change or morph into something else. I'm trying to keep my anxiety to a minimum. After a cervical cancer scare about 5 years ago, I learned that stressing and worrying is not going to change the outcome one little bit, but it's very hard to keep it from playing on my mind sometimes. I'm hoping this thing with my breasts will be the same as the cervical thing. Almost cervical cancer, but not quite - CIN3. The best outcome I can have with my breasts at the moment is almost breast cancer, but not quite - LCIS. I won't know for sure until I have either a lumpectomy or mastectomy.

Leaf, reading back to your horrible experience with the biopsy - when I had my ultrasound guided biopsies (one from each breast), I had to make them stop with both and put more local in, because it hurt. I don't know if that was because the Dr didn't put enough local in initially or didn't wait long enough for it to take effect. He did seem to be in a hurry to shove the biopsy needle in after the local injection. Whatever it was, I was determined that I would not put up with unnecessary pain, despite the fact I was dosed up with valium and propranolol for my anxiety.

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Nov 23, 2017 04:50AM Kerri_Oz wrote:

So I saw the surgeon today. He has referred me for an MRI. The reasoning behind it is that he thinks that whilst I may be able to get the BPMX through the public health system, they may not be willing to cover the reconstruction due to the surgery not being strictly necessary. The MRI may show up something that changes that. I would be surprised if it doesn't, because every test I've had so far has shown up something new. He wondered if I would still be willing to have the BPMX without any reconstruction and just go flat. That has really got me thinking and I've been doing some research. It seems the recovery is certainly easier, and the risk of complications and infection are reduced. It might not be such a bad option. I've seen pictures of women who have nice flat, neat chests. I've never had much boobage anyway, and have always hated wearing bras. Taking my bra off is pretty much the first thing I do whenever I get home.

Excisional biopsies of both the area with calcifications containing LCIS and the complex fibroadenoma was mentioned, but not really pushed. The surgeon said he could do it with just cutting around my areola, but I really can't see the point if I'm going to have the BPMX anyway, and am glad he hasn't insisted on it (as yet).

Anyway, I will have the MRI before I make any decisions and maybe hang out in the Living Without Reconstruction forum for a bit.

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Nov 24, 2017 10:17AM NicolaSue wrote:

Leaf - I bet you will know the answer to this. Can any abnormal cells in LCIS actually go away? In other words do we think the body's killer cells (forget what they are called) can eradicate a proportion of LCIS or...do we just not know?

In other words lets say there is an area of LCIS which is not removed. Does it just sit there as a collection of cells or can the body actually, in some cases, overcome it and return the cells to normal?


LCIS diagnosed Spring 2017. Finding my way slowly.
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Nov 24, 2017 10:28AM Georgia1 wrote:

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.

Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast
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Nov 24, 2017 01:57PM leaf wrote:

Well, in studies the LCIS women who took an AI did have a reduced incidence of DCIS or invasive cancer, at least for a period of years after the took the AI. Since we can't tell where LCIS is (for sure) without doing a biopsy and removing it, we can't reliably monitor where a spot of LCIS is and keep that spot alive undisturbed. So I don't know how you can study whether an LCIS spot will disappear or not. I'm sure there are more clever people than I, but I can't think of a way of studying that.

I suppose you could monitor a spot of LCIS that was present at surgical margins, but you would have one confounding variable that you wouldn't know whether the surgical excision changed the natural course of the LCIS. (This might be a concern because while they know that during a regular breast biopsy, IF they find invasive breast cancer, the invasive breast cancer cells are often found on the biopsy instrument washings and at least sometimes in the biopsy track. Since breast cancer seeding from the biopsy is thought to be very rare if at all, then they think that the surroundings of an invasive breast cancer cell are very important to whether that cell dies or not. Also, normally, if breast cancer is found, normally the biopsy track is removed, and/or the track is irradiated, and/or chemotherapy is administered, which may also kill the invasive breast cancer cell.) You would also have the trouble that (since breasts are jiggly) whether or not you excised the EXACT same place at the LCIS margin to monitor it.


Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 24, 2017 02:27PM Lisa123456 wrote:

@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.

Dx: 06/13/2016, LCIS, Left. Dx: 08/10/2016, ALH, Right.
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Nov 25, 2017 09:55AM NicolaSue wrote:

Fascinating Lisa!

LCIS diagnosed Spring 2017. Finding my way slowly.

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