Just diagnosed with ILC
My pathology report says it is a well-differentiated grade 1 lesion. The malignant cells have fairly small uniform nuclei. No mitotic activity is noted. No significant in situ carcinoma component is present No definite lymphovascular invasion by tumor is noted. My surgeon says my prognosis is very good, if there is no lymph node involvement, which she does not think there is. Am cautiously optimistic but confused about the technical jargon!
I had a MRI on both breasts today to see if there are any other lesions.
I would appreciate any information about this disease and your experiences with it. Thanks for being here!!
Comments
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yorkiemom, welcome to the club no one wants to be a part of. ILC is a sneaky little booger, rarely shows up on mammos. How did you find yours? Do you know the ER/HR status? Sounds like you are probably a good canidate for lumpectomy, just my guess. There so many factors that play into what tx path you take, just read all the info you can and make the decision that is right for you.
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Hi cmblastic! It was right behind my nipple, so maybe easier to see on mams. Don't really know, but I am so grateful they caught it early! I don't have the ER/HR status on this pathology report. I know the genetic testing is taking a little longer,so maybe that testing is also. My MRI will determine what surgery I have. From what I'm reading I am terrified about the ILC monster. Part of me wants both girls gone so I don't have to worry about what's percolating under the skin.
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I had a BMX, my tumor was so big--and I am small breasted anyways. My right side was cancer free but just as dense as my left so I opted for a PMX for that side. My choice. My BS said it wasn't necessary, but I wasn't sure I could handle the rechecks and the fear of it coming back on the other side. Plus wasn't too crazy about the thought of the imbalance of it all. I also had chemo first, then surgery so they could get better margins. And then rads, and now Tamoxifen. The reason I ask about your hormone status, is that has much to do with your tx plan. Do you have any family history? Dense breasts? That's the most tell-tell of ILC, its sneaky cause it likes to hide in dense breasts. Mine didn't show up on mammos at all--even when it was hard as a rock and the size of my whole breast! But that's another bitch for another time. Keep me posted on what your docs say!
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cmblastic, I do have a family history, sister and grandmother. I've been told I have "cystic" breasts all my adult life. Is that the same as dense breasts. You can tell I have a lot to learn!
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I think fibrocystic is the same as dense. I was dx with dense breast tissue about 7 years ago...and no one told me about my increased risk for b.c. I was told that by a gynocologist! My yearly mammos have always been clear right up to 9/29 when my 2 c. lump was dx as ILC, stage II, grade 1. I'm 53. I feel like taking out a billboard and sharing the information about dense breasts and the false security given because of a clean mammo with everyone. I feel so duped sometimes....!
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I mean I was told about my dense breasts by a gyno who never shared any other info with me. And I'm getting the whole tx too, including a bi-lat mx. Like cmblastic, I don't want the lifelong fear. My breast turned on me. I want them both gone.
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I can relate, sadly.
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Hi
3 years out--had a lumpectomy, chemo, radiation-- all went pretty well... things are completely back to normal.... feeling great-- consider myself cured.... I do insist on an annual MRI as part of my follow up since it was not caught on my mammogram.
good luck
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yorkiemom--- breast density and fibrocystic breast disease (FBD) are 2 separate issues. You can have dense breasts and no FBD; you can also have FBD and no problems with breast density. (I fall into that catagory---radiologists say breasts are fatty and very easy to read on mammo (versus dense breast tissue which is very difficult to see thru on mammo); one can also have both conditions at the same time; which is fairly common in younger women.
Anne
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yorkiemom-----forgot to mention----my mom had ILC many years ago--radiation, lumpectomy, tamoxifen--is now a survivor of 25 years next month with no recurrence!
Anne
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yorkiemom,
Good for you to stay optimistic! I think ILC is so sneaky and hard to detect that you are fortunate to have it dx now. From my short experience with it, decisions can't be made until after all the waiting (which can feel like forever!) for results. I started as a 9mm and thought I would have lumpectomy and rads. Results changed my plan. I still feel very optimistic, just a bit of rougher road. I also had fybrocysic and very dense breast tissue. Stay positive and make sure you have good communication with your surgeon!
♥ Sara ♥
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momand2kids, thank you soooo much for that encouraging information. I have 3 little grandkids and I want to know my future greatgrandkids, just like my parents have!
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Thank you sarasowise! I know there is a rough road ahead. Tomorrow we will know the MRI results which will, probably, direct surgery decisions.
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awb, I am just so grateful for your positive stories and the support of BC survivors. In less than one week I've been thrown into a world of horror and confusion. God bless everyone on this board.
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Yorkie
here is what one doc told me early on, and I decided to go with it .... " this is just a bump in the road"... when I decided to have chemo, my doc said, "well, the bump is a little bigger, but not much" and my favorite (and most true) " this will all be over in 6 months (and it was, more or less).
Good to have the MRI-make sure there is nothing else floating around--- once you know that, things will start to take shape, you will make a plan and get going.....
I am not saying it is not serious or that it is easy-- these days are hard and will be for a while. But you will get your life back. Just figure out what you need to do with your family and your doctors.... do it, then start the healing process.
keep us posted
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also,
make sure you ask for the oncotype test --they will have to send a sample in after the surgery--this can help you make decisions about chemo.
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momand2kids, I so appreciate and need those positive words! My surgeon has also been positive, although she does not have the complete picture yet. We have an appt. with the onc this morning and the surgeon tomorrow. Hopefully surgery will be scheduled then and I'll know what kind.
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I will definitely do that. Thanks again!
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Got the MRI results and talked with ONC. MRI for left breast is completely clean. Right breast shows tumor and what appears to be injury from the biopsy (won't know for sure until they go in). The ONC is pretty confident that this is Stage I, but won't know until sentinel lymph node is tested. We're meeting with the surgeon tomorrow. Hopefully we will then have a surgery date. We are optimistically hopeful, based on all current information, that this can be dealt with.
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all sounds good--- once you have the surgery, the stage and the grade will be more accurate and the hormonal status will be known--then you canmake your plans. Great about the left breast--- nice to know what you are dealing with...... good luck with the surgeon--- you are going to get through this....
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Met with surgeon today. Due to the location of my tumor she recommends mastectomy with reconstruction. Said that I would probably look quite deformed with the kind of lumpectomy I would need (tumor is close to nipple). Then she discussed the type of recon. I think the implant is the way to go. Using my own tissue would make the surgery and recovery much longer and the pain much greater. Will meet with plastic surgeon next Tues. to discuss this more. Does anybody have any thoughts about all this? Decisions, decisions.
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Taking out a billboard is the urge I have too. I learned alot about the risk factors of having really dense breast tissue and fibrocystic changes, but all too late. Most articles say you're not at increased risk of "getting" cancer, but try to find it on mammos (mine never showed up) and try finding a lump among all the other lumps each month. And the ILC type tumor is more stringy and like a spiderweb --more so than a lump. (I now tell my friends to be on the look-out for not just a lump, but a full/thick feeling in some areas, like when your milk comes in after pregnancy). I learned alot from the website www.areyoudense.org about BIRADS scores and how they could have helped me diagnose cancer sooner. I have Stage II ILC, had a lumpectomy, couldn't get good margins, did the BMX and soon start chemo. I will be using cold caps. ER/PR +, Her2neu+.
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how are you doing yorkiemom, I had a BMX on Oct 17th my onco score was 11 so no chemo unless something shows up in th left breast I'm still waiting for my final path report... it's 2 weeks late but as they say no news is good news right?
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Hi Yorkiemom - Sounds like you're moving along with a good head and both feet on the ground. It's so difficult. Since you asked thoughts about MX, my only thought is to advise you to get a second opinion before making a decision on surgery. Exactly what does your surgeon mean by "quite deformed"?
Before having an MX with implants, I personally would want to know whether or not radiation would be in my future as radiation and implants don't always play well together. When I as going through radiation, there were several women on our support thread who had MXs, thinking it gave them a Free Pass to skip radiation, but it didn't for a variety of reasons.
They usually check the lymph nodes at the same time as the surgery. Some may recommend doing lumpectomy/SNB as a first step. Then you would know more definitely what you're dealing with and could follow-up appropriately.
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Hi Gabby, since I first posted this I have changed surgeons. My current surgeon is going to do a lumpectomy followed by rads. It's been a roller coaster ride for sure, but I feel like I now have a first rate surgeon and a plan that will help assure my survival. That is the most important thing to me. I may consider some reconstruction later on, but maybe not. At this point I just want to make sure "it" is all out and never comes back.
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Pardon me, Sarasowise...
How did it go from 9mm to 2cm? Are they really that far off between the mammo/ultrasound/mri compared to the final outcome at surgery?
Mine has already gone from .5cm to 1cm once the MRI was done.
Another question, for any one? What really is "close to nipple" in terms of measurement?
Thanks,
Sally
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Galsal, yes the size on the imaging may not be accurate, especially for ILC which is notorious for not showing reliably on scans.
Sorry, can't answer your other question. -
A bigger question...what about on a Pet scan? Do things show better then than with the standard images (ie, mammo, mri, ultrasound)? I'm not feeling comfortable after learning more about this one that there isn't more. Nothing else showing on all but a few cysts and a few calcifications in both sides. They're adament they are nothing. I've just had a bad feeling since even learning about them.
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Galsal, I had some small cysts in the non-cancer breast. All the docs swore up and down that those cysts were benign. However, the cancer was multifocal and I never felt it until it was huge, so I can't help but think that it started as a cluster of cysts that became cancerous and slowly grew until they merged into the giant tumor I finally found.
The docs wanted to leave the healthy breast, but take out the cysts to check them. There were also two large fibroids in that breast, benign as it turned out, but they would have had to be biopsied. Instead I decided to have a BMX. Once the breast tissue was checked, they did find DCIS, although the cysts and fibroids were not (YET) cancerous. I am glad to be rid of what was, in my estimation, a ticking time bomb.
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I have never had a PET scan but I don't think they are used for breast imaging, only for the rest of the body. I believe the MRI is the most sensitive.
Cysts are quite common; I have a lot of them.
If you have had mammo, ultrasound, MRI and physical exam you have had more than standard treatnent.
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