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Topic: For those diagnosed with LCIS, did you get a second opinion?

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

Posted on: May 18, 2018 12:06AM

poppyseed67 wrote:

I understand it's wise to get a second opinion. I am considering doing so myself, just to confirm that my diagnosis of LCIS is correct. And, there is a chance there might be another interpretation that is a bit more worrisome. So, I am curious how many of you had a second opinion and, if so, whether it diverged from the original pathology report.

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May 18, 2018 11:32AM light1candle wrote:

Hi poppyseed67,

Yes, I did get a second opinion, not so much because I didn't believe my pathology was correct, although I had heard the story of Rita Wilson's PLCIS being found to have microinvasion on her second pathology opinion.

I did the second opinion consultation to try to satisfy my need for more information. It's so hard to get good information about LCIS to help with your decision-making!

My original pathology showed "busy breasts" -- ALH, LCIS (classic, but with at least one focus with more abnormal cells, -- the word "pleomorphic" was used, but I was told it is still considered "classic" LCIS), large central papilloma, radial scar, columnar cell changes. My BS really treated all of this as no big deal -- her initial recommendation was to come back in a year for a clinical breast exam and a mammogram. I had to be assertive and ask about 6 month surveillance, and what about an MRI? At first this surgeon balked about the MRI saying insurance may not cover it, and I had to ask to be put through a risk calculator. She finally got a nurse in the office to do the Tyrer-Cusick calculator with me. When my risk came out about 64% she was surprised and did finally refer me for the MRI. (I have since learned thanks to Lea7777 to take the risk calcualtor with a *huge* grain of salt.) This doctor did push for me to take one of the anti-hormonals, but I have quite a few other health conditions that made me question whether I am an ideal candidate for these drugs, but I couldn't get her to talk to me about side effects, etc. I know she isn't an oncologist (and kept saying that LCIS isn't cancer!) but neither did she offer me a referral to an oncologist to talk about the drug options and my own health conditions. It was for this reason that I self-referred to the "high risk" specialist at my local NCI-designated cancer center.

The new hospital did re-read my pathology and the results were pretty much the same as before with one exception. I initially had a vacuum assisted core needle biopsy before a later surgical excision. The first pathology on the CNB showed ALH and papilloma, and the excision showed more stuff -- including the LCIS and radial scar. The pathology re-read actually classified the ALH found in the CNB as LCIS. This was not a substantially different finding but more of a judgement call as to the degree/extent of the atypia.

What was more important to me though was that the new doctor actually looked over my health records and took some time to evaluate whether she thought I was a good candidate for the AI drugs, and to talk with me about the side effects of the various drugs. She concluded that I was not at this time a good candidate, and even spoke with me about BMX. At this time I am proceeding with 6mo surveillance, including MRIs, but I am still thinking about mastectomy.

Surgery 7/27/2017 Lumpectomy: Right Dx 7/28/2017, LCIS, Right
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May 18, 2018 05:18PM leaf wrote:

I got a 2nd pathology opinion and MD opinion (in ~2007) at the tertiary care center nearest to me. The pathology was about 2 sentences and about 10 words long, just adding ALH with the classic LCIS. The MD opinion was 'your risk is somewhere between 10% and 60%, but probably closer to 10% than 60%. If you want more exact risk info, then look at the literature'. For treatment options, 'antihormonals. If you really want surgery, then I won't block your way to the operating room, but..."

It was only after discussing with my GP who said we really don't know a whole lot about individual breast cancer risk. This is why I keep on pushing the idea that there is a lot of uncertainty in our knowledge, even if you are given numbers associated with your risk.

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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May 18, 2018 06:51PM poppyseed67 wrote:

Thanks for posting. My reason for getting a second opinion would be to make sure that the first lab didn't miss something more serious than LCIS (the other items on my report are less concerning). I understand that with these early indicators, especially when spotted in a minuscule area, it can be easy to mistake one thing for another. As for risk .... I agree, it's a crapshoot. I have heard numbers in a wide range, depending on which health professional I'm talking to, so I am not taking them as gospel.

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May 18, 2018 07:50PM Michi wrote:

I also got a second opinion from pathology, both major cancer hospitals. There was some question about the type of LCIS (classic vs plemorphic) first hospital called it classic LCIS but said a subset of cellswas more PLCIS, second hospital was leaning more towards classic. Either way, before I made a decision I wanted multiple sets of eyes on the path and my MRIs.

Dx 4/12/2018, LCIS, Right, <1cm Surgery 5/20/2018 Prophylactic mastectomy: Left, Right; Reconstruction (left): Fat grafting, Silicone implant, Tissue expander placement; Reconstruction (right): Fat grafting, Silicone implant, Tissue expander placement
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May 19, 2018 03:18PM Lea7777 wrote:

Yes. I did it for the reasons you state, poppyseed67. Other than additional cost, there is no downside to two opinions IMO.

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May 20, 2018 10:08AM leaf wrote:

Agreed - besides time and cost, I like multiple opinions. It helps you with multiple options.

BTW: its usually not difficult to tell the difference between invasive cancer and non-invasive lesions (probably unless you have poor quality slides.) The diagnosis of a specific non-invasive lesion can be more difficult. With LCIS, there's also the problem that you're more likely to have a more serious lesion (such as DCIS or invasive breast cancer) near the LCIS, which of course is NOT solved by having another pathologist looking at the same slides. This risk is reduced by having an excision.

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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May 20, 2018 01:55PM poppyseed67 wrote:

Yes, I am talking about getting a second opinion on the slides from my excision.

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May 21, 2018 09:46AM marketingmama wrote:

Yep, got a second opinion on both my pathology slides and on my follow up MRI reading (brought the images to another breast surgeon). Really liked my second surgeon better. He was thoughtful, patient and took time to really talk to me and my husband. We actually sat in his office after my exam! Who does that anymore? He was the one who wanted to do another reading of the slides (I hadn't thought of it) saying that it's always a good idea to get two sets of eyes. Didn't change my diagnosis but was glad we did it.

Dx 12/2014, LCIS, Both breasts, 0/5 nodes Surgery 5/19/2015 Lymph node removal: Left, Right, Sentinel; Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/24/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 9/19/2015 Reconstruction (right) Surgery 11/29/2015 Reconstruction (right) Surgery 2/11/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 22, 2018 10:16AM NicolaSue wrote:

Yes I got a second opinion. I got my pathology reviewed by someone who was considered an expert in the field.

Back in 2010 I found out the importance of a second opinion. I was diagnosed with a thyroid lump (a large one). I had a thyroidectomy and then one of the leading centres in the UK looked at the pathology and said it was malignant (ie I'd need radioactive iodine therapy). On an instinct I got a second opinion - benign! So that was one view each way, so I got another two views and one of them said malignant and one said benign. Then I realised that in the US (I'm in the UK) you have far more cases than we do so I sent my pathology to the Mayo Clinic for a further review. They said benign.

So (perhaps to the detriment of my nerves!) I never take what the first doctor says anyone and always seek a second opinion.

LCIS diagnosed Spring 2017. Vacuum excision biopsy. First follow up mammo 2018 - clear
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May 29, 2018 05:34PM - edited May 29, 2018 05:36PM by CGab

I have just gone through one wire guided surgical biopsy the beginning of may that pathology stated was LCIS with ALH. I'm 43 and no family history of BC. They then had me do an MRI and then a needle biopsy of a lesion and a lymph node.

Saw the (very inexperienced) Oncologist today and she said my biopsy shows benign. When I asked about the lymph she had to pull it back up! She wasn't aware that the radiologist asked the office for a second order that day to biopsy the lymph because she was on vacation! She then said that was also benign. She then went on to say to address the LCIS she wanted me to be on Tamoxifen for 10 years with an annual MRI, then she said "No, five years of that medication with 2 MRI's done biannually. The radiologist and my surgeon had recommended that the area showing the LCIS be removed and she doesn't think it's necessary. I plan on getting a second opinion on all as soon as I get copies of all my reports.

Can anyone tell me if they have been put on that medicine and watched as she is suggesting? Thanks!

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May 30, 2018 02:33PM light1candle wrote:

Hi CGab. So sorry that you find yourself here. I guess you know by now that LCIS is a difficult diagnosis because it's fairly uncommon and it seems the more you learn about it, the more questions you'll have than answers. That being said, there are some wonderful women here who have been living with LCIS for some time now and who hopefully will chime in soon. We have all made very personal choices when deciding which avenue of prevention to adopt. I can't tell you what is the right choice for you, of course, but I think you are on the right track with getting a second (or third!) opinion as the oncologist you described did not seem helpful at all. I think most of us have felt we had to do a lot of our own research and get multiple opinions to find a doctor we trust and to feel confident that we are making the best informed decisions on our own care.

With an LCIS diagnosis we all are presented with three main options: heightened surveillance with or without anti-hormonal drugs for prevention, or possibly preventative bilateral mastectomy. I was recommended anti-hormonal drugs, which I didn't feel comfortable taking due to other health concerns, and yearly mammograms. I had to push my BS for an MRI and am now on a 6 mo. program of surveillance, alternating mammograms (and sometimes US) with MRI's, but I am still considering PBMx. You'll notice I said Breast Surgeon because I was not offered an oncologist appointment, I presume because I don't "really have cancer", so I followed up with a second opinion appointment with the physician specializing in "high risk" cases at my local NCI-designated cancer center.

From my research, I would say that even whether or not to excise an area of LCIS that shows up on a core/needle biopsy is controversial. In my case, my initial biopsy showed ALH and an intraductal papilloma, so the combination of two high risk lesions may be why an follow-up excisional biopsy was recommended for me. Some of the research I've seen, though, says that you can just follow up classic LCIS found on biopsy with heightened surveillance and a recommendation for anti-hormonals, if the imaging and pathology are concordant and if there was no other high risk lesion found. On the other hand, I would have not been comfortable without the surgical follow-up and am glad that I had the excisional biopsy. (Having said that, I should say two things: I am lucky to have decent insurance with fairly low deductibles but insurance & cost may be a consideration for you. Also I have large breasts and removing a golf-ball size chunk of my right breast did not cause any noticeable deformity, but that might be different for a smaller breasted woman and be something else to consider.)

So... No real advice here, except to know yourself to know how much uncertainty you can live with and to know how you will deal with the worry associated with your choices. Oh, and also to follow your gut & find a medical professional you like & trust. (Still working on these two things myself.)

Surgery 7/27/2017 Lumpectomy: Right Dx 7/28/2017, LCIS, Right
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May 31, 2018 07:41PM Lea7777 wrote:

Can anyone tell me if they have been put on that medicine and watched as she is suggesting?

Yes, that is the typical course of action. Tamoxifen cuts the risk of breast cancer in about half.

I had the LCIS area excised and removed for 2 reasons. 1) very rarely can LCIS become invasive cancer at some point in the future 2) There is a 15%-ish chance that LCIS is "hanging out" with invasive cancer. If the LCIS is removed and biopsied, you can be assured there is no cancer there. I have small breasts and the amount removed cannot be detected. The only evidence is a scar.

Like Light1candle, I am still considering PBMX, but will try another drug first. Those of us past menopause have several drug choices. You have one choice, CGab, Tamoxifen, which has the longest successful track record of the 5 drugs out there for high risk bc.

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May 31, 2018 09:40PM CGab wrote:

I heard from my Oncologist today. She stated that she spoke to the radiologist (who did the latest biopsy which was another suspicious area different from where the LCIS is located, a lesion and a lymph node) and the pathologist. Since this vacuum biopsy was done at a different hospital than that of my excisional biopsy, the pathologist told her that he was not aware of the other imaging I had done and therefore was changing the status of the report to inconclusive as he feels that not enough tissue may have been taken for a clear result in light of the missing information! So now my Oncologist is recommending another surgical biopsy! I'm so upset because the radiologist also did the wire guided excisional biopsy at the other hospital so I don't know why the pathologist didn't get all the information! I also spoke to my surgeon and he said he recommends seeing the genetic doctor first and getting those results before we do anything further. I'm so stresses because not only do I have this LCIS area, but now I have these two other spots and no one can tell me if they are truly benign or not. I feel like none of this makes sense!! SO STRESSSFUL!

I see the genetic doctor on Tuesday. I had an appointment previously, but had to cancel due to the 2nd biopsy. My husband thinks we should get a second opinion on everything at Northwestern in Chicago since we live so close. I know it's normal to have multiple biopsies, but is it normal to have multiple excisional biopsies?

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Jun 2, 2018 10:14AM leaf wrote:

Hi there CGab. I'm sorry you're going through all this stress.

As you know, a lot is controversial about LCIS.

I do know though that its quite common in DCIS (and probably invasive) to have multiple excisional biopsies. At least as of a few years ago, they normally want to excise all/most of the DCIS/invasive - they want to get 'clear margins', which means an area of normal tissue around the DCIS or invasive cancer, or at least the bulk of it. Often breast cancer looks different than normal tissue with the naked eye, but sometimes its sometimes really hard to see during an operation, and sometimes its pretty subtle. (I think. Its not very easy to find photos of breast cancer (not photos of specimen slides) on the web, and if its a photo that looks like normal tissue, then they'd have less reason to post it.)

They don't normally need 'clear margins' in LCIS because a lot of LCIS will never become anything worse : in other words, a lot of LCIS will NEVER become invasive. LCIS does not RELIABLY show up in imaging, or be seen with the naked eye, so its impossible to know if you've 'removed all of the LCIS'. When people with LCIS go on to get DCIS or invasive breast cancer, years down the line, it often is at a spot different from the 'original' area of LCIS. Normally, people who have 1 spot of LCIS have other spots of LCIS, in the same and/or other breast. Its a really hard thing to study, but at least SOMETIMES they think LCIS is a sign of some other condition that puts both breasts at higher risk for breast cancer.

You can also ask your present doctor(s) about his/her line of thought - what information from the previous biopsy did they need? Are they worried about another area? Are they concerned about the trajectory they should use to get to the lesion? If you have doubts, then I think second opinions are almost always nice in a controversial decision. It can give you another line of thinking. (Sometimes it can be hard to choose which opinion is the best for you, though.)

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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Jun 2, 2018 08:58PM Lea7777 wrote:

How very frustrating and stressful for you. The medical professionals should not be adding to your stress through mixups. I am with your husband, CGab. After that 2nd opinion, then you can decide. You can include the genetic counselor appt where it fits. I got a 2nd opinion on my core biopsy and also on my excisional biopsy.

If you decide on another excision and believe it is needed due to an oversight or miscommunication, perhaps you could talk with the billing dept/patient advocacy dept about reduced cost for Excisonal #2.

Good luck to you.

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Jun 3, 2018 05:14PM - edited Jun 3, 2018 05:15PM by CGab

Thanks for your reply. Is it normal for doctors to want to keep doing biopsies on different areas? Wouldn't it make more sense to do a PET scan or do they try to avoid those as much as possible because of insurance and just keep insisting on biopsies?

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Jun 4, 2018 05:27PM leaf wrote:

Not sure what a PET scan would do; PET scans are normally used to detect metastatic cancers. (Its really easy to get all this complicated terminology confused. There is a LOT of technical terms which can be very confusing.)

It can be difficult to get insurance companies to pay for breast MRI scans. Obviously, it depends on what kind of biopsy you have, and where it is located, but breast MRI scans can cost about as much or more than, say, a stereotactic mammography guided biopsy, or certainly an office needle biopsy (if you have a palpable lesion.)

Because there are certainly false positives and false negatives in MRIs, if the doctor can hit the correct area on a biopsy, a biopsy will give you a much more definitive answer.

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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