Newly diagnosed: ILC on top of PLCIS
A couple of weeks ago I was diagnosed with PLCIS via a biopsy of irregular looking calcifications. I had a lumpectomy set for the end of the month.
Late last week I went in for the radio implant thing pre-op. and they asked if they could do a couple other biopsies as they saw additional calcifications that looked suspicious. (different practice)
I now also have Invasive Lobular Carcinoma 
She said it broke out of the lobule. This is all in the same breast. To the best of my knowledge I don't have any calcifications in the other breast, but I have an MRI scheduled for the end of the week.
The receptors report says it's sensitive to estrogen and progesterone and is HER2 negative.
I have another consult with the surgeon next week after the MRI results come in.
What questions should I be asking her? I am so brain dead right now.
I am (nearly) 55 and only have two known instances of cancer in my family: a great aunt diagnosed with breast cancer in her early 70s (lived about 12 years) and a grandmother with colon cancer, I think she was in her 60s.
This was found in a regular mammogram but as increased calcifications, not a mass. I've been told I have dense breasts so I always get an ultrasound with the mammogram. The surgeon said she didn't feel anything in my lymph nodes. I have read a few other posts which do not sound as encouraging as the surgeon made it out to be!
Comments
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You'll be okay, Hello, and I know it's a shock to get news like this because it's normal to think the worst; it's part of the consequences of our culture that (even in 2020) wants us to believe that a cancer dx means we will die from it. Actually, that is not true, and that is old, outdated information. Cancer is a disease that can be treated and even cured in some instances. Welcome to our group-it's a good one, full of support and current, credible information which is what you need right now. ER/PR+ HER2- is really good news. I couldn't tell what kind of treatment you had to determine this pathology, but often ILC simply responds to surgery and then an anti-hormonal med, no chemo needed. If you have + lymph nodes you may need chemo, but without a clear complete pathology and more information it's hard to say. ILC has a tendency to be slower growing overall (not always, but tends to) so take heart in that.
Let us know when you have more info, and know you'll be okay!
Hugs,
Claire in AZ
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Thanks for the hugs Claire. I really need them today, I told my parents. That was so freakin hard
As I understand it, the pathology says 0.1mm micro invasive lobular carcinoma in one of the new biopsied locations, and 9mm invasive lobular carcinoma in the other. These were the two biopsies taken near each other last week.
It sounds like they were running additional receptors on another piece (maybe they only did one of the two) but expect them to be the same.
It is expected that my original biopsy is still PLCIS, they reviewed it again and said they don't see anything invasive on that one. But I don't think they ran another pathology.
Maybe there's another forum for this, but I am completely blown away that the place that did my mammogram and initial biopsy did NOT see the areas that actually have cancer. If I had stayed with them, there's a chance I'd be getting the PLCIS removed with cancer sitting right next door.
Because of that, I am getting more terrified by the minute that something else will show up in the MRI. I have read of people finding way more than they expected, and being told it was probably in them for years before it was found.
I have had a tightness in my left chest the past couple of years (have gone to 4 new doctors in recent years , three last year alone and no one finds anything). I've been having a hard time working out, and of course the less I work out, the more out of shape I am and now I'm in a vicious cycle.
So it's been a day full of tears. I'll get strong enough at some point but I'm still processing all this. Thanks for listening
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Hi Hello,
I see (from another post) that you are experiencing anxiety, which is so expected during this time. I asked my kind surgeon for an rx. of Xanax and he didn't question me-wrote the rx on the spot. I used half of a .25 mg tab, and that took the edge off during the worst times. I have generalized anxiety disorder anyway, and adding my own dx to that was at times unbearable. Often just knowing I had the Xanax on hand relieved the anxiety-I didn't even sometimes need to take it.
As for missing the cancer on your scans-ILC is notorious for that. It is often missed on scans (I had 5 clear mammos, all the while ILC was growing in me); ILC tends grows in sheets and not an obvious mass, so it's hard to miss. Add dense breast tissue to the mix and ILC can hide from scans even more (I have dense breasts, so I had the double-whammy).
Ask your doctor if you'll have a PET scan as part of your dx (it's a way to find something that might be hiding). I was terrified of the results, but when they came back clear, I nearly fainted with relief.
Hang in there; you'll get through this.
Claire in AZ
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I have dense breasts too, though the place that did the second biopsies didn't seem to think so, so I may be bordline.
Is a PET scan part of the MRI (which is tomorrow), or something different?
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Hi helloitsme789
A Pet scan is different than an MRI on a different machine. Never had both on the same day because of needing injection of the tracer for Pet and different injection for MRI. You should have received instructions for prep for each scan. Good luck tomorrow
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Exactly; PET scans have prep, I think, at least 12 to 24 hours out. Here's a link to a typical prep plan that I shared with another member earlier this month. The prep is important for PETs because not following the instructions can lead to potential false positives, which of course we sure don't want.
https://www.northshore.org/nuclear-medicine/diagnostic-tests/pet-scan-procedure/
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helloitsme, a large percentage of precancer and cancer does shop up larger in mri. My plcis was much larger in mri than US and was not seen at all on mammo (13 cm!!! ).And this was my first 3D when they found it. But ilc was about the same as US. Also if mri doesn't see anything in nodes that is good but you can also have smaller node invasion not seen. Especially with ilc. I Don't mean to scare you, I just don't feel I was properly informed before and right after surgery. They kept minimizing my situation. And my surgeon left me hanging for 2 weeks knowing I had a positive node and I had a breakdown. But it is still considered early stage if in a few nodes and estrogen positive. But it did complicate my treatment decisions and my breast surgeon gave me bad information. Good luck!!
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Thanks for the info! I feel like I'm getting a lot of "sunshine" from the docs but I guess that's their job.
I didn't finish the MRI today, got nauseous after the dye. So I have to go back Tuesday, 3 hours before my consult.
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Sorry to hear you got nauseous from the dye, will they be giving you something for nausea before repeating the MRI.
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My primary called something in for me that would help with motion sickness and take the edge off anxiety. I am hoping they'll use a different dye too. It was awful. I may have been ok if I could have stuck it out two more minutes but I thought I was going to throw up. They said I was white as a ghost. My BP dropped like a stone and I was cold and clammy.
Worse is she said she has to do the entire test again and the dye was the second half
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I made it through the MRI today, that tech was an angel!
Met with the surgeon after and she says the ILC is larger than the biopsies showed (left breast), right breast looks clear
Two left lymph nodes seem to be involved (under arm)
And she sees a spot on my left lung she wants me to get checked out so that's a CT scan tomorrow
To say I'm not doing well mentally is an understatement!
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Hello, it will get better. I freaked too. But eventually got over the hump. As I was told your estrogen status is good regardless of node status. I wanted to be aggressive because ilc is so sneaky and pushed for bilateral mastectomy and chemo even with clean left. Don’t trust scans anymore. The lung thing is probably nothing. I had some scarring on the lung. Great that they are doing the ct so soon. I was denied by insurance and had to appeal. Where are you? Sloan recommends cmf chemo for similar dx. It is less toxic than tc.Keep us updated. ❤️❤️
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I'm in CT and the group I'm with is a member of the Sloan Kettering Alliance
I had bronchitis 3 times in 6 weeks many years ago and always have a lingering cough after even a minor cold. But every other ache I have is crying out right now and even some new ones. My stomach is in knots. I am tempted to take one of the anti-anxiety pills my doctor prescribed.
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Do whatever you need to. I stayed in bed, watched tv and read these forums and researched for 2 months. I take lunesta for sleep. The anxiety pills don't help me. Then I came out of the fog and pain from surgery and started house projects I've been wanting to do for a long time. Then I binge watched botched lol. My tissue expanders were taken out due to infection. You'll feel better when you have a plan. At some point further along in process you might want a second opinion. I was fearful and waited until I wasn't getting the answers I was comfortable with, but when I did it found drs with polar opposite opinions. I went to Sloan for an opinion and didn't switch to them but am following their recommendation. The “alliance”is not the same thing. Mine is in their “alliance” too.
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Yes, absolutely don't trust scans. They pick up everything, and almost always it's some insignificant nothing. I hate them because they can lead to unnecessary worry for the patient and overtx. Do what you need to care for yourself; if that wasn't an anti-anxiety moment that needed medication, I don't know what was.
Hang in there!
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I took the pill and just got back from the CT scan. I can't bear the thought of this being any worse.
I am already doing house projects lol
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Hello, Don't panic. I mostly meant mammograms and I was angry I didn't know about 3D until this year. And ilc is hard to detect in mammo. I did not want to rely on mammograms for my clean breast for the rest of my life. We should be getting routine ultrasound at a minimum. Each scan has a different view/purpose and limitations. Sounds like you are getting what you need. I believe Claire's point was different. That some scans like pet and mri can show false positives and your lung spot may be nothing.
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I have a mammogram and ultrasound every year and to the best of my knowledge, even this year, the ultrasound didn't pick up anything. The ultrasound tech actually told me all the cysts that had been seen in the past couple of years were gone.
My place had info in the waiting room about 3D but the tech kind of brushed it off when I asked her, said they weren't really better or something. She certainly didn't encourage me to look into it.
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I mean they pick up stuff that could be interpreted as a false positive. I stopped trusting mammograms when I had five clear ones, and wound up with a 2 c. tumor in my right breast; it was there all along.
My husband is retired military-Special Forces. His favorite commander always told his team that "the first report was often suspect". I take this to mean "get more information" before we jump into the rabbit hole of fear and panic about anything we are told initially.
Claire in AZ
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The CT scan was ok!!! Never thought I'd be so relieved to "just" have cancer. What they saw on my lung was an azygos fissure.
Next thing is a biopsy of my armpit as that still showed a possible lymph node involvement. She suspected two with the MRI and now one with the CT scan. (You know my armpit has been on fire for two day since she gave us those results, right?)
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Good news!! Good luck with your biopsy! I’m told with bmx no more scans at all, unless you get silicone implants, which really freaked me out, but I’ll have to accept it or fake some symptoms every few years, or get the implants lol. I have a friend who gets mris every few years for screening dense breast’s. I wish I was better informed. They need to treat ilc differently than idc. They just lump them together and we’re in the minority.
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new here and wanted to reply to the 3D mammo comment above
I had one in May followed up by US, which is normal for me and my dense breasts. They found nothing
Now here I am 9 months later with a ILC dx (yesterday)which shows a 2.5 cm lump on US, but they won’t really know size until MRI
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AmericanInIreland, thanks for the input. Makes me feel a little better that maybe it wasn't the technology change and instead the timing. Although I don't want to think my tumor grew that fast in one year. it sucks we are led to believe mammos are so great. We should have been getting ultrasounds or mris. my ilc was the same size on mri but the LCIS was much bigger.
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I don't think they saw my ILC on the US. For some reason, when I asked to have my records (to bring to the new place) they didn't seem to include the US so I have to fix that.
The MRI showed the tumor much bigger and still nothing on the right.
The biopsied lymph node was clear.
AND surgery March 20 holy ****!!!!!!
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HelloItsMe789 how big is the ilc? Lumpectomy or mastectomy?
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The pathology says 0.1mm micro invasive lobular carcinoma in one of the new biopsied locations, and 9mm invasive lobular carcinoma in the other
This is what the MRI said though: cIrregular non-mass enhancement seen within the upper outer breast, posterior depth, 2:00 axis, measuring 2.4 x 1.4 x 1.3 cm, consistent with biopsy-proven invasive lobular carcinoma. There is linear non-mass enhancement that extends anteriorly and superiorly from the biopsy-proven malignancy to the two additional biopsy sites, biopsy-proven pleomorphic LCIS and microinvasive lobular carcinoma. One biopsy marker (top hat-pleomorphic LCIS) is seen anteriorly from the malignancy by approximately 3.9 cm (series 103 91/204), and the other biopsy marker (cork-microinvasive lobular carcinoma), at the 1:00 axis is seen superiorly by approximately 3.2 cm (series 7 image 82/332). The 1:00 axis cork biopsy marker is slightly laterally displaced. In total the irregular non-mass enhancement spans approximately 5.0 cm in longest dimension
I kind of like the mm numbers better
She is recommending total mascectomy on the left, including nipple. I am choosing to do both sides.
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sounds a lot like mine. My invasive is exactly the same size and same place. I'm surprised they didn't see anything on ultrasound. The size from the biopsy is only what's in the needle, not the size of the tumor. I don't want to scare you but don't be surprised if final pathology shows some node involvement. My mri didn't show it and testing during surgery showed one node and final pathology was two. I just wasn't prepared mentally and my dr was horrible at communication. Sent her assistant to tell me in hospital and wouldn't talk to me for 2 and half weeks. Where are you?
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I'm in CT
The MRI showed possible 2 nodes, CT Scan showed one. So we did an ultrasound and biopsy of that one which came up clean.
That said, she told me they'd take some to test to be sure. I don't know how many that means
The place I'm currently at may have been able to see it on the ultrasound, I just didn't realize they never got them. The original place that did my mammogram found PLCIS, they missed the cancer right next to it.
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ILC is such a sneaky cancer. MRI I had did show one spot on my left breast, that's why I was recommended for lumpectomy. But I thought I will get nervous after surgery since ILC doesn't show any symptoms and I asked for double mastectomy. After the surgery, on my left breast I had 2 places with ILC, 2 positive lymph nodes that MRI didn't show and right breast had LCIS that MIR didn't show. Mastectomy is not easy but I am so glad I did it because the biopsy showed lots of surprises.
Good Luck HelloItsMe7!
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