Should the dr remove this LCIS?

PandaMommy

Should the dr remove this LCIS?

PandaMommy

Hi, I am 48 and was just diagnosed today with LCIS. A very confusing day where the first words out of the surgeon's mouth were "Good news, it's benign. You don't have cancer." These cheery words were immediately followed by ... "BUT ... indicators for future cancer, especially with the strong family history ... the name says carcinoma but it's not a "true" cancer ... need to see a geneticist ... need to see an oncologist ... tamoxifen ...many women opt for PBM."



Unfortunately, I did not get the nuance of "true" cancer, and I told my family and my supervisor that I don't HAVE cancer, just a higher risk for it now. That was how I understood it.



I couldn't look into this until tonight, and I found, of course, that it is cancer, it is just not called a "true" cancer because it hasn't put the move on other tissues, and it's level 0, etc.



I am remarkably grateful to have found this site with medical info and, most especially, these posts. It's nice to know I am not alone with this confusing diagnosis.



I saw where someone referenced their LCIS being removed. Mine was found when they biopsied tissue around the papilloma they were removing, so they haven't removed the LCIS. Should the dr go back and take out LCIS? Should the dr test the other breast? I saw posts referencing multiple LCIS as being worse, but how do they know if they don't test multiple areas?



Forgive me if this has already been addressed in earlier posts.



Thanks!

dlb823

Hi ~ Sorry you haven't had any responses to your post yet.  I think in most cases, DCIS and LCIS need to be removed to prevent a possible future invasive bc.  The problem is, unless they remove it, you may not know if you have a tiny spot of invasive bc hiding within it.  The good news is, it's not a rush, and you can take some time to get a 2nd and maybe even a 3rd opinion, including preferably one from a breast (only) surgeon at a major comprehensive cancer center.  

Your thinking about not knowing if there could be more LCIS in other areas is correct.  So prior to removing your papilloma, did you have an MRI to see if there was anything else going on in either breast?   If you haven't, I think that would be a logical step now, since the papilloma and LCIS have been dx'd.  And again, I think this needs to be in the hands of a breast surgeon.  

Sorry you have reason to be here, but I'm glad you've found BCO, and hope you'll get some more input on your question.   (((Hugs)))   Deanna 

TerifromOhio

Hi Pandamommy!!  I had the same questions as you when I was diagnosed with DCIS. I had 2 biopsies done and the second one showed that I also had LCIS against the chest wall. I then had an MRI of both breasts with the left one being clear and the right one with a large area of DCIS. My Breast Surgeon suggested a lumpectomy and Tamoxifen for 5 years or a Bi-Lateral Mastectomy because of the large area of calcifications on both breasts. I chose to do the double mastectomy with reconstruction. I had the surgery last July and as of last week, I am done with all the reconstruction. I am happy with my decision becasue I did not want to worry the rest of my life that it may spread and become invasive. My odds are a lot better now. Its a tough decision. I have a friend that chose a lumpectomy and Tamoxifen and is doing fine.

Good luck to you, and if you have any questions if you opt for the mastectomy, feel free to PM me!!

Teri

DocBabs

LCIS is not consdered to be a true cancer but rather a growth of abnormal cells.Women that have LCIS are at a higher risk of developing an invasive cancer but not everyone that has this diagnosis goes on to develope breast cancer. I , unfortunately, was one of the lucky ones that went on to develope an invasive cancer. I had no family history.Most LCIS is hormone positive so that's why hormonal therapyy is given. You cannot remove all areas of LCIS but a surgical biopsy of the area is done in case anythging else might be lurking there. It was never suggested to me that I have a PMX, in fact I was told that it was way overreacting to even consider it. Wish I hadn't listened to them!

leaf

After you have had an excision for LCIS, it is IMPOSSIBLE to know if you have had all LCIS removed.

Why?  Because mammos and ultrasounds do not normally detect LCIS, and MRIs certainly don't reliably pick up LCIS. LCIS is ONLY diagnosed by looking at a piece of breast tissue under the microscope.  You have to remove it to tell that it is there.  You can't reliably get 'clean margins' with LCIS.  They know that (almost all the time) breast ducts intertwine but do not intersect.  They do NOT know if breast lobules intersect - its too complex. 

LCIS, unlike DCIS, is normally multifocal (meaning many different spots of it occur in one breast), and usually bilateral (in both breasts.)    They know this because they used to routinely do bilateral mastectomies on LCIS women, and they looked at the mastectomy specimens. So they can't 'remove all the LCIS' without doing a mastectomy. Even so, you could have LCIS in the  proverbial 3 remaining breast cells left in your body after bilateral mastectomy.

If you COULD somehow remove all the LCIS magically with excisions (not a mastectomy), that does NOT remove the increased breast cancer risk that LCIS entails.

When they do an excision after a diagnosis of LCIS, they are not doing it to remove the LCIS, but they are doing it because there might be something worse in the vicinity.  LCIS is normally an INCIDENTAL finding.  That means, normally they find a 'lesion' (something abnormal on a mammo, ultrasound, or MRI, or a lump) and do a biopsy.  For LCIS women, the LCIS is often found not AT the site of the lesion, but ADJACENT to it.

Of those LCIS women who go on to get bc in the future (not diagnosed within, say 6 months to 2 years from LCIS diagnosis - thus was there at the time of the LCIS discovery), the bc is normally found NOT at the site of the LCIS, but in another part of the breast that looked totally normal on imaging.  

Usually, of the LCIS women who go on to get bc, most of them get DCIS or IDC, not ILC.  In a small number of cases they do think LCIS itself morphs into a breast cancer, but not often.  Even in the minority of women who go on to get bc, the site of the bc is almost equal between the two breasts.  While LCIS is often bilateral, it is not always bilateral, yet the bc risk is still almost equal between both breasts.  If LCIS was always the precursor for future bc, then you'd expect one breast to get breast cancer more than the other, because there are (?maybe 60%-throwing out a number) of women who have unilateral LCIS.  So that's another clue that usually LCIS is thought of as a 'marker' of increased risk, not usually a direct precursor of DCIS or invasive bc.

So that's why LCIS is thought of as a marker of higher risk for both breasts (even if LCIS is only found in one spot in one breast.)   Its like it has 'action at a distance'.  They don't know how or why LCIS women have a higher risk for bc.   LCIS is a weird disease.

But the MAJORITY (>50%) of women with LCIS (at least classical LCIS without a family history)  will never get bc in their lifetime.