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

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.

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

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.

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.)

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?

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.

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.