Anyone also diagnosed with LCIS after ILC surgery

jessie123

After my lumpectomy the pathologist reported that I also had (have?) LCIS. So I guess now I'm even at a higher risk of reoccurrence. Can LCIS be seen with MRI or other imaging? Has anyone else found after surgery that you also had LCIS. I guess it's OK with a BMX, but not so good with a lumpectomy. Just wondering how often LCIS shows up with ILC after pathology report.

beach2beach

I originally on biopsy was told IDC. After surgery come to find out its ILC with LCIS AND DCIS. I had a double mastectomy. LCIS isnt considered cancer but it is a marker that one is at an increased risk of developing cancer. I would ask your surgeon if this finding changes your follow up. Perhaps adding breast mri then 6months later mammo/sono to keep on top of things.

Hannah1962

I have ILC and had a lumpectomy in December. My margins included not one but TWO separate LCIS - but the surgeon says by the current protocol these count as clean margins --not cancer -- so no additional surgery. My Oncotype was 19 so no chemo. I had rads (20 days, 16 plus a boost to the tumor bed). It looked to me like they did the radiation over quite a wide field. I am interested to know from other women if they do radiation all the way to a couple inches below the breast, two inches into the other breast, and up into the underarm (I had only one node tested, sentinel and it was negative). Maybe my rads covered the area below my breast because I had a lower quadrant tumor. But the rads seemed to go high too! It makes me nervous too, knowing in that small lump there was the ILC and TWO LCIS. Also makes me nervous, I had an MRI before surgery, and one team thought there might be a second cancer at 12'oclock position, and the other thought there might be another behind the first at 7 o'clock. The 12 o'clock was biopsied and was nothing, not even LCIS. I take comfort in the knowledge the radiation was over a wide field. Also if the spot behind was another cancer, it got extra radiation because of the boost. I am now on Femara and doing very well on it (no SE). That's my experience. I hope it helps. I think those LCIS are unfortunately common, and it just means we have to be vigilant with followup.

EngJojo

My doctor said the same thing as Hannah1962. LCIS is not even considered cancer anymore, just equivalent to a higher risk. I have extensive LCIS along with ILC and my surgeon still thinks lumpectomy was the way to go. I do have one margin that is not clear and he will clean that up, but the margins with LCIS are considered clear.

jessie123

beach2beach --- yes, they plan to rotate MRI's and mammograms. I kind of knew I'd be under high surveillance.

Hannah -- my oncotype score was also 19 and I'm having 4 boosts because one margin was 1mm. How could you tell how much they radiated? I have some markers on my breast, but I thought they were to make sure the machine was located in such a way that my whole breast would be radiated. No I'm sure it didn't go over to the second breast or on my upper stomach. But it is supposed to be radiating the entire breast. My tumor bed is very large -- 3 inches by 4 inches because they saw an 7.4 cm extension from my tumor --- turned out to be nothing after surgery. Maybe I'm getting 4 boosts because my tumor bed is so large. Have you asked your RO why they are doing you upper stomach and part of your other breast?

Engjojo --- they found two mini ILC's next to my main tumor so they also call mine multifocal. I don't like that. Makes me wonder if there is more that the MRI didn't pick up. Our care free life has certainly changed.

Hannah1962

Jessie, sorry I'm responding a month late. There were a couple ways it seemed evident they were giving radiation over a fairly large area. There was a large screen on the wall in the treatment room - every week they adjusted the target area - I saw the target mapped out every day I had radiation and I noticed the changes, not to mention every Friday they told me they were re-mapping. It looked like they expanded the treatment field in the second and third weeks before shrinking it week 4 for the boost. Also, my skin got red over the treated area, which ended up going right under the arm and down my side (toward my back). I'm typing this on my phone - will give better detail tomorrow - Hi, I'm editing this now I'm on a laptop and have a proper keyboard. I am curious to know if my radiation field was larger than typical and if it had anything to do with the LCIS. I think it's standard for the radiation (even of the tumor bed) to cover a certain radius around the tumor that was removed. That alone would have made my radiation go below the left breast by an inch or two because my tumor was at 7 o'clock (below the nipple). But then weeks two and three it looked like they went further and further under my arm and along my side, far from the removed tumor.

Here's another fact about my case that could be relevant. I was called back a couple times for diagnostic mammos starting in 2011. I remembered the later ones but had actually forgotten 2011. This week I am scanning medical records (going to digital from paper), and i discovered a report of concern from summer 2011 - I had an area in the outer middle quadrant of my left breast - I was called back for a diagnostic mammo then dismissed when it dispersed under pressure (they concluded no mass present). Is it possible the doctors were worried that might have been lobular or LCIS? Maybe they were not 100% sure the only tumor was at 7 o'clock (what was removed).

In any case, if the doctors were trying to cover all the bases with extra rads near that earlier area of concern, I have no problem with it. The radiation treatment was easy and almost totally painless.

AliceBastable

Aren't the boosts pretty standard for most lumpectomies, to give additional radiation to the tumor bed?

Hannah1962

Yes, that's what I was told, that boosts are standard.

jessie123

Hannah --- When you say they went 2 inches under your breast do you mean they went to the underside of your breast or onto your abdomen? My entire breast (underside and top) was radiated and it did reach close to my underarm, but it didn't go down my side. I really don't like having ILCS -- that makes us at a much greater risk of both ILC and IDC )-:

Chrissyk4321

how are you ? i just got diagnosied,

Hannah1962

They went about two inches onto my abdomen. Also during those later weeks they went down my side.

I’m curious, if anyone doesn’t mind sharing - where are your tattoos? Those tiny dots?

jessie123

Hannah --- Maybe someone can weigh in on this because I'm not sure about it, but I think the radiation only kills small microscopic cancer cells left over after surgery. Also, I've never heard of them using radiation to kill LCIS or larger cancer tumors. Your radiologist can pull up the pictures of each days radiation and explain to you why your entire side and stomach were radiated --- also what internal organs on your stomach or side were affected. I didn't have tattoos, but I had ink covered by clear tape --- I had them on my stomach, sides and on my breast. They were changed to different places when I had to boosts.

ItsHandled444

Hannah1962
I have 2 tattoos, 1 in the center of my chest and the other under my right arm. Whole breast radiation, 30 regular and 5 boosts.

Hannah1962

Thank you, ItsHandled. I have six tattoos, and I know they are used for determining location for radiation treatments, however, they probably don't actually outline the field. I should ask the radiation oncologist at my followup appointment in a couple weeks (I had rads in March). There is one between my breasts, in the middle. There is another tattoo three inches below that one (on abdomen but in middle). There are two more about 1 1/2 inches below to the right and left (forming a triangle with that center one on the abdomen). Then there is another on my abdomen under my breast on the side, below the breast by at least 2 1/2 inches. I think there is yet another on the side, higher up, but it isn't so easy to find.

youngdogmum

I had a unilateral mastectomy and the remainder of my breast was full of LCIS; never showed up on any imaging before however I hadn't had an MRI pre mastectomy. Would be interesting to know if that would have shown up.

jessie123

youngdogmom --- no, I've read it doesn't show up on ultrasound or MRI. I had a breast MRI before my lumpectomy and the LCIS did not show up. It was a surprise after surgery. We have to make horrible decisions between having a lumpectomy, bilateral or unilateral MX. We have no idea about the LCIS in advance --- if we had know we may have chosen a BMX.

skv0123

jessiei123 - I am so sorry to hear they found this & didnt know LCIS isn’t considered cancer. I’m confused how they remove precancerous cells for example wind the cervix but not breast cancer.we have to make some horrible & scary decisions. I had my BMX 2 days ago & am not even sure that was the “right" decision when it dawned on me I didn't want to make any of these decisions. I hate how confusing this can all be.

jessie123

skvo123 --- Aren't you glad your BMX is over. Congratulations - you'll never have to go through that again. Hope your pathology reports are good. They didn't know that I had LCIS until my surgery -- they found it when they took out the cancer. I know it's not cancer, but it sure puts me at a greater risk of future cancers. It didn't show up in my biopsy -- only during surgery. So the worry continues.

skv0123

jessie123 I am glad. But, I may have to have more surgery. I had direct to implant but they had to take some part of my breast due to the ILC being so close to the skin. Ugh. So, they almost did tissue expanders except they had done the mastectomy of my healthy breast first so they would have to have gone back. So, they went through with direct to implant but I may needn’t adjustments. Ugh. But it’s is over

skv0123

jessie123 I am glad. But, I may have to have more surgery. I had direct to implant but they had to take some part of my breast due to the ILC being so close to the skin. Ugh. So, they almost did tissue expanders except they had done the mastectomy of my healthy breast first so they would have to have gone back. So, they went through with direct to implant but I may need adjustments. Ugh. But it’s is over.

HeyLady

My biopsy indicated LCIS; MRI and ultrasound showed so cancer. I made decision to have bi-lateral mastectomy with immediate breast reconstruction six months later. Surprise, surprise, pathology report indicated one breast with Invasive lobular carcinoma. So MRI not always accurate.