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Topic: So it turned out to be ILC...im 46

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Jul 15, 2019 10:26PM

Trying2staypositive wrote:

I go for an MRI tomorrow of breasts and see surgeon Wed. first thing. They couldnt tell me anything other than ILC grade 2 so far, not size, not receptors or anything. I guess thats normal? Anyone with this diagnosis want to chime in?

This was only seen on 3D mammo as an area AD; guess I was one of the unlucky as its not a benign radial scar even though it was not visualized on ultrasound at all. I am dense though.

I have family history yet my mom had IDC stage iv and told me that ILC has a good survival rate. I know so very little. I already know I want a bmx because I was already considering that due to adh/alh (was found in a biopsy just before this 2 weeks ago). Of course as most people hope, I am hoping I dont need chemo or god forbid it has already spread. I have a 12 year old son. I worry most for him.

I am not sure if I should talk to 2 surgeons or one. I dont want to spend alot of time on that as this was first seen in May and not sure how fast growing it is. Any advice? Im open to any and all observations and experiences. Thanks~

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jul 16, 2019 06:34AM Mavericksmom wrote:

I am so sorry you are going through this.

I was diagnosed with ILC in Dec of 2018. Since it was around the holidays and I was in shock because I had been cancer free for almost 16 years, I didn’t get a second opinion. Biggest mistake I ever made as I too wanted a BMX and was refused because the cancer hospital I went to won’t remove a healthy breast unless the patient is positive for the BRCA genes. I ended up with a single mastectomy and now I am looking at another surgery next summer to remove my so called healthy breast.

ILC tends to occur in both breasts. There is great information on this website about ILC. They are finding out more and more that it behaves much differently than IDC.

There is on particular thread here that has a great deal of information: Did you know where ILC recurs by Texas357. Worth reading. Go to All Topics and then ILC

I have a strong family history too, though I am BRCA negative. I am going for Risk Assessment in the fall. My mother and two of three sisters had breast cancer. My oldest sister had lymphoma at the same time, then got MDS and sadly passed away from that. I was 49 when first diagnosed

If you feel confident with the breast surgeon you see great, but a second opinion at another practice never hurts. Don’t let them rush you into anything. Of course time is important but the wrong team of doctors isn’t good either!

Wishing you the best, please keep updating how you are doing!

Dx 6/4/2003, IDC, Left, 1cm, Stage IB, 0/24 nodes, ER+/PR+, HER2- Surgery 7/16/2003 Lumpectomy: Left Chemotherapy 9/9/2003 Radiation Therapy 12/15/2003 Dx 11/4/2018, ILC, Left, 1cm, Stage IB, Grade 2, 0/0 nodes, ER+/PR+, HER2- (IHC) Surgery 1/9/2019 Mastectomy: Left; Reconstruction (left): DIEP flap Hormonal Therapy 4/25/2019 Femara (letrozole)
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Jul 16, 2019 07:11AM Dani444 wrote:

I am sorry you need to be here but I know you will find a lot of support here. I have been so grateful for this community. I was diagnosed last August with ILC. My tumor measured differently on all imaging but the MRI turned out to be the closest. I will say that due to where I was in my cycle I had areas light up in the MRI that were not there when I went back for a second biopsy. ILC can be sneaky in imaging but from what I understand MRI is a good tool for this.

Typically ILC is more slow growing. They will likely do an oncotype or mammaprint test to determine if chemo is right for you. But other factors such as age, tumor size and node status play a role in that decision as well. Things do feel a little better as you start to get a better picture of what you are dealing with and have a surgery plan in place. Your pathology after surgery will give you the definite answers as far as size and node status. All of the testing and waiting really can be the hardest part. Please don’t hesitate to ask as many questions as you need to. Sending you all the good vibes as you move forward. Let us know how the MRI goes

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/24/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 16, 2019 08:07AM edwards750 wrote:

Let me chime in and say what others have posted this is not a place you want to be but it’s a great site to get advice and comfort. It’s been my lifeline since I was DX in 2011.

I had IDC but my sister has ILC. She had a MX in 2012. The doctors wanted her to do both breasts but she refused. There was no evidence of cancer in the other breast. Her MO did not prescribe chemo or radiation at the time - just Arimidex.

I agree don’t let the doctors manipulate you into doing something you aren’t comfortable with. There is time and it’s a lifetime decision. Second opinions are always a good idea if you aren’t sure. I had a lumpectomy and 33 radiation treatments. A low Oncotype score allowed me to dodge chemo. My sister had dense breasts too.

At the onset your medical team will overwhelm you with information and it’s a lot to absorb especially when you aren’t prepared. I was clueless at first.

Do your homework and ask questions. After all it’s your body and your life.

Good luck. Keep us posted.

Diane

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Jul 16, 2019 03:01PM arizonaboundgal wrote:

Hey Trying. Well, I guess yesterday was our lucky day! After an abnormal mammogram in May, an MRI in June and (finally) a biopsy last week, my phone rang early yesterday morning to let me know that I, too, had ILC. I'm meeting with my surgical 'team' tomorrow as well. As far as details, the breast navigator shared that it was a preliminary grade 1 and that it was ER +. (From what I understand, the vast majority of ILC is ER +, and that the grade is subject to change.) I'm sure that your surgeon will share all that he/she knows when you meet. As others have said, it's always good to get a second opinion, but if you like your doctor and feel confident in what they have to say, maybe you won't feel the need.

I've been on several different sites trying to find out as much about this cancer as I can, and am coming up with a short list of questions for my surgeon. It does sound like a sneaky little ***tard; very hard to diagnose, but seemingly pretty slow growing and very treatable.

I haven't totally made up my mind about surgery yet, but my gut tells me to just go for the BMX for a bunch of different reasons. It sounds so scary and invasive, but in the long run, maybe it will be easier than going the lumpectomy/radiation/close follow up route. These past few months have been filled with much worry and many sleepless nights and I don't want to have to go for mammograms or MRI's every 6 months...I (mostly) say to lop them off and be done with it!

Wishing you luck on your MRI today and your consultation tomorrow. Like many before us, we will get through this and be stronger for it. And do reach out if you need to talk, fellow survivor!

Enjoy every sandwich--Warren Zevon
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Jul 16, 2019 04:45PM Trying2staypositive wrote:

Thanks so much for all the replies and experiences. Im so sorry we are all going and/ or have gone through this. Its definitely tough and my mind has gone to some dark places.

My head is spinning with all ive read about “better prognosis” of ILC (and then again not so much as it tends to have a higher recurrence rate years later even at distant locations and metastasize to more locations.) Also reading sometimes chemo is not super effective is scary....and the association with gastic or ovarian cancers rattled me. Im just afraid.

I get my MRI results tomorrow at same time I see my surgeon. I will post what happens. Im afraid since I have grade 2 moderate ILC, and dont yet know the stage. I know the stage is everything...as it will determine if I need chemo and radiation. I know MRIs dont always detect spread....I will probably feel much better when I have a game plan. I hope! Thanks again for replying. Keep fighting the good fight...sometimes its so hard.

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jul 20, 2019 12:20PM - edited Jul 20, 2019 12:20PM by beach2beach

Hi,

I will be two years out on 8/8. originally dx with idc but after surgery it was ILC. I had previously opted for a double mastectomy due to a family history, my sister had IBC, and the fact that my boobs were always busy with something going on and the anxiety of going every 6months to keep tabs on the remaining breast just wouldn't work for me. I did not find out the ER/PR/HER 2 numbers until about a week after the biopsy. they took longer to come in than the actual dx. I was a grade 1, stage 1. They did the oncotype about a week after surgery and it took another two weeks or so for results. Mine came back as 9 so no chemo. I take tamoxifen and so far so good. I have no regrets on a double mastectomy. I just wanted what turned on me, gone. Such an individual decision. I went right to implants..albeit small, but I was not a canditate for DIEP,,not enough stomach fat and I did not want to take it off of my butt. :) .

so many different things you can read, same survival rate, better rate, recurrence long term, etc. nevermind the ovarian/gastric aspect. I think over time it is true, you learn to think around these things during the day so it doesnt completely eat you alive with worry. I also had a 62 gene test done and everything from the BRCA's to other mutations were negative, but as we know that doesn't mean you will or will not get something. Crap shoot we have not much control over.

Go with your gut. Have a good support system iin place,,even if its one person or 10 people. Treat yourself kindly during this time..cry, scream, yell, drink, enjoy life..don't give up on what makes you smile..,,whatever gets you through. I did them all.

You will get to the other side of this and enjoy that son of yours. :)

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/11/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 20, 2019 06:45PM momand2kids wrote:

Hi

I am 11 years out-- ILC, lumpectomy, no nodes, chemo radiation- hormonal drugs--did it all... it is true, ILC does tend to grow slower- and is sometimes missed on mammograms (as mine was) so an MRI is pretty critical for follow up over time(I have one every other year). I think the oncotype test can help you with deciding about chemo if that is on the table. As a plan develops, you will feel better.... you have time to make decisions---

Yes, ILC can recur later, but so can all other breast cancers. Yes, it sometimes occurs in the other breast, but for many, it does not. Everyone is different-everyone's biology is different-- I think gathering a team of medical professionals that you trust is the best first step-then get the testing and analysis you need to make a decision.

As for the surgery, that is such a personal decision-everyone has different reasons for doing mx or lx--only you can decide. If a lumpectomy is possible, sometimes starting there is a good place-you can always do more later if you feel you need to.

Best of luck-- it will get better.


Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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Jul 20, 2019 06:59PM Trying2staypositive wrote:

So I meant to update-my MRI showed another suspicious area on the cancer side, and a probably benign on right they would follow for 6 mo. Nodes seem ok but I guess MRIs are not conclusive. Surgeon recommended mastectomy on cancer side (with option for prophy mx on other for ease of reconstruction). Reason for mastectomy being between the ILC area and an area of adh/alh (found on 2 sep biopsies) he would already need to take too much so not a good cosmetic result. (Even worse if that third area is excised). I could have biopsied the third before surgery but that wont tell me about spread so still on the fence if I should...

Pathology of cancer area shows 98% ER+ 95%PR+ and HER2 negative, looks like stage 1 grade 2 ILC. Of course no idea what behind area of adh/alh if anything or area three. He felt my nodes and said they feel ok so he is optimistic. Im hoping for the best....he mentioned them doing mammoprint and oncotype scores after pathology. He is going to check my nodes during surgery-taking first nodes on both sides to test. Then he says takes a week for pathology on breasts. All this sound pretty standard? I do like him. Meet the plastic surgeon next week.

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jul 20, 2019 07:13PM Trying2staypositive wrote:

Also for those of you on hormonal therapy, how horrible has it been? I am afraid of side effects. Also not that this is less important but of those I know on them it killed their sex lives and ability. Greatly impacted their marriages. Im young to lose that part of my life..

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jul 20, 2019 08:10PM arizonaboundgal wrote:

Hey Always. I was wondering how you made out with things. Isn't your head just spinning right now?! Sounds like you have more info and a plan. Glad to hear that it's Stage 1 and hormone responsive. Hope that brings you some sense of relief...even if it's only temporary. My pathology report is very similar to yours; some lcis, ilc with a little lobular hyperplasia thrown in for good measure. Are you still considering the BMX? How soon will the surgery be? Did you ever think you'd be on this forum talking about all this crap 6 months ago? Ugggg. Sure has been a long week. Hang in there!

Enjoy every sandwich--Warren Zevon
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Jul 21, 2019 01:03AM Elephant wrote:

Trying2stay: you will read a lot of comments from people about the side effects of hormonal therapy because they can be pretty devastating and scary; there are, however, a number of people that have no side effects at all. I am, so far, one of those fortunate people: I have been on Tamoxifen since April and have had no side effects at all. A friend of mine was on Tamoxifen for 10 years, has just finished and had no side effects either. I think that people with no side effects tend not to write comments because in a way you feel so bad about what other people are going through. But you need to bear in mind when deciding whether to take hormone therapy that a number of people do have side effects and a number don't have side effects so that you should not think that you will necessarily be in the unfortunate category of those who do.

Dx 11/5/2018, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 12/15/2018 Lumpectomy: Left Radiation Therapy 2/19/2019 Whole-breast: Breast Hormonal Therapy 4/14/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 23, 2019 12:43PM Trying2staypositive wrote:

Thanks ladies. Sigh....such a lot to take in. I am still trying to learn if they want to do a third biopsy prior to bmx...radiologist didnt recommend on the mri report (havent seen it yet) but figuring insurance wont be chomping at the bit to pay for an mri biopsy when im already diagnosed. Probably $$$$$. I told surgeons office i will do it if he sees any benefit though. Still wont tell me my node status....

As for the hormone therapy I probably need to chill and focus on surgery first before I panic about treatment. I would find it a great blessing if I dodged chemo of course....I just know most women end up on hormone therapy either way..

Dx 7/15/2019, ILC, Left, Grade 2, ER+/PR+, HER2- Surgery 9/10/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement

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