Both ILC and IDC

AmyMac

I just had bilateral mastectomy. ILC on right (10+cm) and IDC on left (2.5cm). 19 positive nodes on right. Anyone else unlucky enough to have both concurrently

SSBNewbie

I had 9 mm IDC on the left (stage 1A) and a 2.1 cm ILC on the right (stage 2A).

Meow13

I had one idc and one ilc each 1cm on left, multicentric close to skin. Although skin was not involved pathology after mastectomy said 2 separate tumors, so not multi focal after all. 95 % er, but pr negative less than 1%.

I didn't do chemo but AI drugs for 4 years. 6 years and counting NED.

Lab-girl

yes, I had IDC and ILC and extensive dcis on the same side

QueenElizabethTheFaux

Yes...but in the same Breast. (The ILC wasn’t visible on any of my mammograms or sonogram. It was discovered by Quest Diagnostics, not the hospital staff. Had to undergo a double mastectomy 3 weeks after my Lumpectomy w/Immediate Reconstruction.)

Mucki1991

cancer soup here

beach2beach

Initially on biopsy, diagnosed with IDC. At pathology after BMX, was diagnosed with ILC along with DCIS and LCIS all in the same tumor. Guess the LCIS won that battle to turn into ILC.

lulubee

Presented with both ILC and IDC. Neither showed on mammogram.

dtad

Me too! ILC and IDC in the same breast. ILC missed on 3D mammoth and U/S. Picked up on preoperative MRI. So if I didn't have IDC, I never would have known I had ILC. Crazy disease...

vlnrph

My ILC grew for years showing up as architectural distortion in dense tissue by mammogram with unremarkable follow-up ultrasounds. After diagnosis, my very first MRI detected an IDC tumor in another quadrant.

Always curious as to how often this phenomenon occurred, I searched the literature and asked questions but could not get a definitive answer. Since the presence of two lesions of differing pathologies qualified me for genetic counseling, I would suggest others with this condition consider requesting a referral for that also. Don’t just let a doctor order a panel test or send in a sample: you need the expertise of a master degree trained specialist!

Even with minimal family history there is a possibility of a hereditary mutation passed through male ancestors who may not develop a clinical case and so the defect can hide for multiple generations...

Lab-girl

vlnrph,

Interesting point about cancer gene mutations with IDC and ILC and paternal inheritance. I was diagnosed at 43 and was found to have a Lynch Syndrome mutation passed down from my dad. My dad had cancer but not breast cancer. New studies show an increased risk for breast cancer with the particular mutation I have. My dad's sister and mother and her sister all had breast cancer. Since my mom didn't have bc I didn't think I was at a particularly increased risk. Hmmm.

AgathaNYC

The pathology of my first biopsy showed Triple Negative ILC. Since that was unusual my MO ordered a second biopsy on the tumor. That one turned up both IDC and ILC together in the mass, all TN. I won't be surprised by anything they find once it is removed (I am in the middle of A/C chemo, them Taxol, then surgery.)

Georgia1

I had a mixed IDC/ILC tumor with a smaller ILC tumor right next to it. I've read a LOT about it, but as far as treatment goes it is pretty much the same. I was lucky both were small so I had a lumpectomy and am about to start radiation.

Hipline

There is a webinar tomorrow sponsored by ABCD on ILC that will feature researcher Steffi Oesterreich and clinician Rachel Jankowitz on ILC. You can ask questions at the end! Here is the link:

http://hosted.verticalresponse.com/1808367/3978e23d8c/TEST/TEST/

Chiarara

My first post!

I have only recently been diagnosed with an IDC tumor (about 11mm) sitting on top of an ILC tumor (about 8mm), with some other small bits of ILC close by (all right side). Also extensive LCIS and a bit of DCIS- apparently I have hyperactive breasts.

I was fortunate (!?!) the IDC was there, because otherwise I would not have felt anything and investigated further. Both IDC and ILC tumors were identified in mammogram/ultrasound by an extraordinary radiologist (my treatment team actually refer to her in those terms).

Because of the small extra ILC foci found in surgery, the surgeon could not get clean margins, so currently weighing up whether to have mastectomy, or another lumpectomy (which may still not achieve clean margins) + radio. I'm leaning towards the mastectomy.

I'm also interested in what was written about a possible genetic link- as I am quite young (44yo), however, no cancer on my Dad's side, as far as I know.

Meow13

Well if you do the mastectomy you will get detail pathology and maybe avoid radiation. Reconstruction is pretty good these days.

vlnrph

Chiarara, welcome to the club nobody wants to join. With your young age, genetic counseling could be useful.

Should there be an inherited defect, radiation may be more risky. If your cells are already unable to repair DNA correctly, there might be detrimental mutations formed by the treatment. Mastectomy is possibly a better option.

Congrats on having extraordinary doctors! Hopefully they will continue to get you through all of this...

CENOK2017

where can I read more about Invasive Lobular Cancer

Georgia1

Ceno, here's a place to start. Let us know if you have any specific questions.

http://www.breastcancer.org/symptoms/types/ilc

ShetlandPony

I was just reading this thread. Sorry to go off topic a bit. Regarding vlnrph's comment about paternal genes and Labgirl's response post from November, about her ILC diagnosis at 43, Lynch syndrome from father's side, and her father's having had cancer, here is another puzzle piece. I'm not sure where it fits.

https://bmccancer.biomedcentral.com/articles/10.11...

"Patients with lobular breast cancer were found to be significantly positively associated with having a father diagnosed with cancer, OR 2.17 (95% confidence interval (CI) 1.37-3.46). The finding persisted after excluding breast cancer in the family. Ductal breast cancer was associated with having a mother diagnosed with cancer. There was a significant association between lobular breast cancer and having a father with prostate cancer, OR 2.4 (CI 1.1-5.3). The occurrence of having a father with prostate cancer for lobular breast cancer patients was higher in the younger patient group, OR 2.9 (CI 1.1-7.8), and was still high but lost statistical significance in the older patient group, OR 1.9 (CI 0.5-7.4)."

It wasn't always prostate cancer found in the fathers. Included was lower GI tract cancer...

Thoughts? I was diagnosed when premenopausal. My own father has not had a cancer diagnosis. My sibling's geneticist believes the Lynch is from mother's side.

EastcoastTS

I have heard about the prostate/ILC connection.

My grandfather (maternal side) had prostate cancer, as did most of his brothers. My mom has ILC and so do I. BRCA and all that negative for us, but I feel there must be some connection here -- and that to prostate. My uncle, mom's brother, had prostate as well.

vlnrph

Thanks to Shetland for the link to that study! Interesting that it was done in Sweden since I have Scandinavian ancestry. I was peri-menopausal when diagnosed so on the younger side of average. Most of the ladies in the local breast cancer support group are in my mother's generation...

Anyway, information like this points out the need for a competent genetic counselor to take a thorough family history, order appropriate testing and help interpret results.

Eastcoast (cute cat) I see from your signature that BRCA analysis was negative for mutations but has a broader panel assessment been suggested?

ILikeCats

This thread is sort of slow-moving, but I thought I'd add to it because I just discovered I have cancer in both breasts. IDC on left breast diagnosed/confirmed in mid-December and, before we could even get a plan of treatment, we found ILC and LCIS in the right breast.

I've seen occasional posts about women who have cancer in one breast and get cancer in the other one later, but apparently there aren't too many of us with synchronous (meaning "happening within a 3-6 months of each other") bilateral breast cancer (SBBC). From what Dr. Google tells me, it's pretty rare -- maybe diagnosed in 2% of all breast cancer cases.

So, just wanted to say hey to all my SBBC sisters!

pink_is_my_colour

ILikeCats: I haven't really found a lot of info on synchronous breast cancer either. But like you, I also have BC is both breasts at the same time. We're an exclusive group that's for sure.

EastcoastTS

Sorry -- just seeing the question here. I had the typical panel they do now -- checked for Chek2, etc., etc. All negative. Do they rerun these as time goes along to check as more mutations are found?

ShetlandPony

EastcoastTS, yes, I was told that new variants do get added to the panels and that the genetics counselor may recommend occasional re-testing. Also I suppose sometimes they learn more about what were once "variants of unknown significance". They forgot to mention this to me the year I was first tested. So you may want to ask.

AmyMac

I am in your exclusive club. Triple negative IDC on left....Hr/pr+ ILC on right. Diagnosed Jan 2017. AC and taxol then dmx and 2 revisions....in radiation now for right side (10+cm) with 6 to go!

EastcoastTS

I will Shetland! Thanks for the response.

Delbydelbydelby333

I'm really confused about this bilateral breast cancer. Idc 1.8cm tumor in left breast and chose BMX because I wanted to feel that I was making the best choice against recurrence Surgery almost 4 weeks ago. Pathology report also showed .6cm idc in right breast, also lcis. Sentinel nodes negative on left, but no nodes removed on right because the cancer there was not known at time of surgery.

Stage 1, Oncotype score of 14. Er+ pr+. Her- for both tumors.

Just saw oncologist about treatment. He recommended Letrozole for 5 years. No need to take nodes from right. No need for chemo or rads, which is great, but he was very dismissive about it all. He told me the cancers were caught very early, they were very small, and the sentinel nodes on left were negative. No need to worry. This attitude has made me very uneasy. I'm getting a second opinion. Letrozole can have horrible side effects, And if my cancer is so insignificant, maybe i really don't need 5 years of hormonal therapy with possible bad side effects. I have so many questions now, especially after reading a lot of these posts.

I've seen quite a few posts that went from stage one to stage 4 metastasized within six years. That is a little scary.

Georgia1

Hi Delby. Letrozole is an aromotase inhibitor, which is frequently prescribed to prevent recurrence. Essentially the masectomy will help prevent a recurrence in your breasts, but for ER+ breast cancer the Letrozole will help prevent a recurrence, or metastasis, anywhere in your body.

It's probably the Oncotype score of 14 that's making him recommend no chemo. And radiation is very rarely indicated after a masectomy with stage 1.

However, I think getting a second opinion is always a good idea, and feel free to ask more questions. I also highly recommend the book "Navigating Breast Cancer" by Lillie Shockney. You can get it on Amazon and it is really clear and helpful. Best wishes to you.

Fairchild

Does anyone know the implications of having bilateral BC vs. unilateral? Wondering about survival rates, etc. I have ILC, about 4mm on L and IDC, about 1.6 cm on R, but there is also an intramammary lymph node on the R, which is scary. Just diagnosed a couple of weeks ago and trying to figure all of this out.....