ILC - going from bad to worse - breast mri input?

doris7125

Hi All,

Well, like I have been reading ILC seems to be a tricky monster. Love to get some feedback on my latest wrinkle. Felt a lump, left breast 4/1 originally diagnosed with IDC 4/10/15. Went to different more experienced provider group and biopsy read as "invasive mammary carcinoma" - lumpectomy left breast done 5/20. turned out to be ILC and not .8mm but 1.8cm and .5cm on lymph. ONCA was 23. So moved up to chemo TC 4 cycles. Last Wed. 2 days before first chemo was the first time the breast mri was ordered. I have very dense breasts etc. and the mammos, unltrasound and biopsies were guiding treatment at that point. So of course now there are 2 "enhanced" areas on breast mri. chemo was cancellled in favor or doing 2 more biopsies next week as I could be in for bigger chemo cocktail and an MX. I know now ILC can hide and while not happy the original chunk they took out was larger than expected once they said ILC that did not seem unfortunately unusual to find more at that time. Finding lymph activity the next bummer. But now I am feeling disappointed that a breast mri was not ordered sooner based on seeing mixed cells or that it wasn't ordered right after ILC diagnosis while waiting for ONCA. Does it seem like the ball was dropped? I am now like many looking at a I turn into a III and wondering what other questions I shoudl be asking? My med onc is plenty experienced but am stressed. Does anyone have experience with these types of findings on mri's? One of the new sites is actually the surgery site and he said that can sometimes be a false positive but it is a larger area than expected....also saying if indicated it might be only single MX since nothing was "enhanced" on right side but really that doesn't give me a lot of confidence.

Thoughts? Bless you all!

Momine

Doris, I am so sorry you are going through this. In my case, they knew from the get-go that it was most likely stage 3, but I was DXed via MRI. I asked for it, and because I live in Greece, I got it with minimal haggling. That said, even the MRI did not "see" the 7 lymph nodes I had with cancer. The doctors could feel 2 or 3 nodes, so they were quite sure there was node involvement, but it was not big enough to register on any of the scans, I am guessing. Funny thing is that the biggest node turned out not to have cancer.

The thing is, even if they did not do an MRI for you at initial DX, it seems to me that you should have had some sort of staging scan prior to surgery, but I don't actually know what the standard of care is on that. I do know that my own doc would want scans before cutting.

Second, about the other side ... On me, they saw 3 small calcifications on the non-cancer side. They were all sure those were benign. They did mammo, U/S, 3D U/S, MRI and a CT, plus a super-careful U/S on the morning of surgery and there were just those 3 calcifications. I insisted on a BMX, although the doctors tried to talk me out of it. On the path report that breast turned out to have LCIS, and a bunch of "lesser" pre-cancerous cells. I have no regrets.

My point is not to scare you, and I am sorry if I did, but to say that lobular is sneaky, sneaky, sneaky and can fool even clever, careful docs. However, given what has happened to you so far, I think it is entirely reasonable for you to get just a tad bitchy and start making some demands. I am thinking you need a good discussion with the onc and the surgeon about what else they can do to make sure they know what is going on. Maybe a CT? I am not sure. Is your surgeon a specialized breast surgeon or a general surgeon?

dtad

Sorry you are going through this. Im being treated at a large university hospital in NYC. Their protocol is to have a breast MRI as part of the diagnosis process. My MRI picked up a second malignancy that the mammo and ultrasound missed. My advice to you is to get to a university teaching hospital if you can. Good luck to you.

doris7125

Thanks - I am at a University Hospital UCH in Denver, he's head of the dept. 30 years. My hubby is wondering if I should just start AC immediately and screw the biopsy (even though onc says that will make it hard for them to tell what it was and determine chemo protocol) since this has been going on since april. I did have a ct and bone scan but again, just a week ago post-lump since I was brca negative, mammos clear other than the bad spot. Should I have a petscan too? The ct showed one tiny spot in lung that he wants to watch but says it would be too invasive to biopsy since it could be nothing. Re DMX - says neo-adjuvant first even if we go that way. I am definitely thinking both even if right is clear given ILC as well. I've got plenty of LCIS. Shoulod I push for chemo start without the biopsy?

Separate question - I had taken the decadron in anticipation of chemo Friday which didn't happen. Felt like superwoman from it and then went out and biked, hiked vigorously on Sat. to work through some of this frustration. Sunday I was a mess, not nauseous but dizzy, sleepy, no fever, chills and hot flashes, sick all day. Doc said could be a small bug or maybe coming down from decadron and having spent too much time in sun (not great with steroids). Others have experience with the decadron without the chemo? Or I am also going to get them to check my thyroid...

mammalou

Doris.. The MRI is important and should not put chemo off for long. I know that feeling that you want to just get going fast. I had that every step of the way but sometimes se you need to listen to the docs. Hang in there!

mary625

I had similar situation--3 things lit up in the non-cancerous/prophylactic side on the MRI. They could not be biopsied under ultrasound--just could not be found. Surgeon recommended to go ahead and start chemo, see what happened after. Then there were two spots, and I had them biopsied using the MRI. Both were benign. It was a good thing to do even though I was going to have BMX because I got to save myself from a sentinel node biopsy.

doris7125

Thanks so much. I spoke to doc today and he agreed that we could start the chemo essentially right after the biopsy done and not have to wait for results. That's a relief! I did have to get in his face a bit as he answered my email as "let's talk about it at your next appt- even though I didn't have one set up yet!....so once I told his nurse the issue, he called right back and we talked it out. He also concurred that it's possible that my surgeon should have ordered the mri when ILC diagnosed on 5/29 vs. waiting til 6/17 to even get it set up. So I think they are on notice now that I need them to treat this urgently and stay on top of it. I still don't have a confirmed start date but hoping for 7/6 or that week as opposed to another 2-3 weeks out. I am glad to hear mary625 that your spots turned out to be benign. It does solidify the idea that the biopsy step should not be skipped. He still wants to go with TC protocol for first 4 rounds until we see what's what vs. doing the ACT - I have some significant heart history in family so he's concerned to throw it in mix as of today. It's very likely an MX or DMX could happen but again, I am just assuming that will happen so I will be prepared and it would happen after this first go around with chemo. Your words and thoughts are all very helpful!!!!

Momine

Doris, I am glad you got them to listen. It sounds like you are on track. Well done!

Leslie13

I was diagnosed with ILC April 2015. It was a stage two with a high ki-67 (proliferation) rate. The tumor was large so I had multiple core biopsies. My medical team decided to use neoadjuctive Endrocine therapy for 6 months to shrink the tumors and get rid of any possible Mets.

I've read that Hormone treatment works best against ILC. I don't know if you're pre or post menopausal, but I've had great results in just two months. The tumors have shrunk over 50%. ILC shouldn't be treated the same as IDC, so you may want to read the info here and other sites before jumping into big decisions. If you're on Endrocine therapy, given your tumor is estrogen positive, you have some time. I wouldn't do anything without a biopsy and tumor typing knowing what I do about how many women have lost their battle with cancer being treated for IDC, and not ILC.

HopefulandScared

I've worked in medical imaging for 15 years now. Since a third of ILC is bilateral at time of dx, and ILC can not be seen on mammo, your doctor should have ordered an MRI when you got the ILC dx in order for you to make good decisions. You know that now. Moving forward, there still isn't the biggest rush. To quote my very well respected breast surgeon, no need to run, "the house is not on fire."

doris7125

interesting about the hormonen treatment and ILC. They did another biopsy based on mri and it's lcis as far as they can tell.....I just had first chemo 7/6 and it was a doozy. I think surgery is in my future but not till I finish these 4 rounds, etc. so think yes, I have some time to digest. I am going to post separately on my bad couple of days to see how that compares to others. Thanks ladies.

Meow13

Doris, I hope you feel better. Maybe they will adjust the chemo dose. Hormone therapy might be helpful since you are ER and PR positive. I would be interested to hear if your tumor shrunk after you chemo sessions. Good luck to you.

CinderellaNC

I was diagnosed withILC after having a needle biopsy . Microcalcifications were seen on a diagnostic X-ray and the radiologist said it was probably nothing and could be rechecked in 6 months or I could choose to have a needle biopsy . I am a worrier and had the needle biopsy and caught my triple negative ILC 6 months earlier than I would have otherwise. My question is I have never had aMRI of that breast or my other one. I had a lumpectomy done at UNC Hospitals and they said I could have an MRI before the surgery but they didn't think it would be necessary. I just wanted to get the cancer out ASAP so I chose to have the lumpectomy as soon as they schedule it. The lumpectomy had clean margins, small tumor less than a centimeter and part of that was LCIS, sentinel node biopsy negative for cancer , grade2 ILC. I am currently having four rounds of TC for a three month course of chemo. They have recommended 4 weeks of radiation following chemo to complete my course of treatment . I have already scheduled an appt. in mid Sept. with a surgeon to discuss my preferred choice of having a bilateral mastectomy and forgoing the radiation. I have dense breasts and even worry if they should have looked at my left breast again to check there for possible ILC . Since the cancer is in my right breast I understand it is not uncommon for ILC to pop up in the other breast. ILC is hard to detect on a mammogram and I think the suspicious area turned up on mine this time only because I had the 3D mammography. Should I assume at my appt. With the surgeon in mid Sept. That he will do MRI's of both breasts before doing the bilateral mastectomy. I worry that there could be more cancer in my breasts just undetected. All the same I remember the radiologist who did my diagnostic X-ray telling me once the cancer was picked up on the X-ray the only way to tell how large it was was to do surgery, no CAT scan, MRI or ultrasound would be able to definitively tell me that only doing the surgery on the tumor could do that. He called ILC the sleaze cancer because it was good at hiding and covering itself up. It seems this ILC and being triple negative also which in and of itself is very rare in ILC is undermining my peace of mind. Now I am thinking should I push up the appt. with the surgeon and demand an MRI of both breasts even before I finish my course of TC? I still have three infusions left.

ShetlandPony

CinderellaNC, it's so good you decided not to wait six months. Since I chose lumpectomy, my doctors recommended that breast MRIs alternate with diagnostic digital (and later 3D) mammograms--one every six months--because of my history of ILC and dense breasts. The reasons were that ILC can be harder to detect with mammograms, while MRIs are considered quite sensitive for ILC; and that dense breasts make mammograms harder to read. I think it is reasonable to get an MRI before you make more decisions, if keeping your breast or breasts is an option you are still considering. I'm not sure I understand why you would need an MRI if you are choosing bilateral mastectomy. They would do pathology after surgery. I'm not sure if it is actually more common for ILC to be bilateral; you might ask what the current thinking is on that.

My story gets a little complicated, so I won't go into it more unless you have questions, in which case I am happy to share.

doris7125

hi - no word yet on tumer shrinking - will let you know. Rounds 1 and 4 the worst - chemo over and trying to decide on BMx/Rad/HT or just Rads and HT - can't shake worry of not doing bmx and having to revisit a local reoccurence....