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Topic: Recommend research to read.

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Sep 14, 2018 12:37PM

Dani444 wrote:

Hi everyone. I was hoping someone could point me in the direction of research to read on ILC, or point me to a thread if that already exists. I have been googling (i know, just what I shouldn't do) but not sure what is legitimate info or not. I am so far still faced with a decision of lumpectomy or mastectomy. I meet with my breast surgeon again on monday and they are still having a tumor board on thursday. I feel certain one day then completely question myself the next. I am trying to not come at this from just an emotional standpoint, I want to understand and ponder the facts as well. I kinda feel like I have shut down emotionally in the last couple days. I am just angry that I am even faced with this choice. Sorry, I am rambling again. Thank you for listening.


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 10/25/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Surgery 8/20/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 14, 2018 06:05PM - edited Sep 14, 2018 06:15PM by Georgia1

Hi there Dani. I'll go through my file this weekend and send you some info. I chose lumpectomy under similar circumstances although my tumors were 8 and 3 mm and from your signature I can't tell what size your little monster is. Age matters too if you don't mind sharing.

And here's some general information; treatment for ILC and IDC is pretty much the same unless there are multiple tumors:

https://www.breastcancer.org/symptoms/types/ilc/tr...


Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 14, 2018 11:41PM Dani444 wrote:

Georgia1, My tumor measured 2.8 cm on MRI. Measured up to 4cm on mammo, and around 2 cm on ultrasound. I am 46 and pre menopausal. Thank you for taking the time to send me the information, I really appreciate it.

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 10/25/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Surgery 8/20/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 15, 2018 10:21AM - edited Sep 15, 2018 10:22AM by dakrock

Hi Dani444

I was told that ILC was very sneaky and If I had a lumpectomy I would need 26 radiation treatments afterwards in addition they  would have to make sure all margins were clear when they removed the lump.  I have heard from other people on this site that they had to go back in later to make sure margins were still clear.  I just wanted the breast gone and not have the worry did the margins remain clear.  It is a tough decision for sure.  I still worry that they didn't take the other breast at the same time but the doctor said that was fine and we would keep an eye on it.  I did have immediate reconstruction which I am not so sure I would do again if I had to have the other breast removed.   I wanted to avoid radiation (which can cause some of its own problems and chemo does not work with ILC.   Good luck with making your decision.  I know how hard this can be.  I felt like I was walking in a daze for weeks.   I am now 6 months out from my surgery and still have many worries.   I now have to have something removed from my face which could be a melanoma.  I get this biopsied on 9/24.     Keep us posted and good luck.

  

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Sep 15, 2018 01:05PM Dani444 wrote:

dakrock, You hit the nail on the head, I absolutely feel like I am walking through a daze. It's like I am watching someone else's life. I do keep going back to the radiation point, I talk to some people and they say it was a "breeze" others have said it was worse than their chemo! If you don't mind sharing what reconstruction you had and why the regrets? My PS said we could do immediate silicone implants but I worry that in 10 years I will be half droopy/half not. I will keep you in my prayers for your biopsy coming up, I am sorry you are having to deal with that too. Thank you for your response.

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 10/25/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Surgery 8/20/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 15, 2018 01:54PM - edited Sep 15, 2018 04:21PM by Georgia1

Dani, per your request for things to read, here are two links. In general, I would stick to NIH, the American Cancer Society, this site, and the Susan G Komen Foundation:

https://lobularbreastcancer.org/learn-about-invasi...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC49520...

You may be wondering if ILC is "worse" than IDC. My doctors say it is not. Compared to IDC it is a bit "sneakier," in the sense that cells form a line rather than a lump, so MRI is the best detection technology. It tends to be lower grade and with a higher ER+ percentage, which means better outcomes overall. It is slightly more likely to recur, when it does recur, to the other breast, the colon or the ovaries. It is less likely to respond to chemo and more likely to respond well to hormone therapy like Tamoxifen or an AI. And it is more likely to have a low Oncotype score, which is good.

As I noted above, I chose a lumpectomy + radiation + Tamoxifen. I'm 59 so both were fairly easy for me and I've had minimal side effects. I had a fantastic surgeon and my margins were clear on first pass. From a cosmetic standpoint, results were great, in part because she used something called a biozorb device to reshape the breast tissue during surgery.

This is all scary and crappy, so if you are feeling angry and confused, you are not alone! Let us know how we can help.



Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 16, 2018 02:09PM dakrock wrote:

Hi Dani444

About having the reconstruction, that was fine but I had such small breast anyway that I really felt it wasn't necessary.  Also I am 72 so for me I could care less.   Lots of people that have the reconstruction love it.   It just feels heavy to me compared to my other breast.  It is something that I always know is there if you know what I mean.   My other breast feels light so I don't notice but this feels like I have a ball attached to my chest - lol.   I will say it looks great because I had nipple sparing surgery so it looks very natural.    Good luck and keep us posted.    

Bonnie Dx 12/4/2017, ILC, Right, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Hormonal Therapy 12/5/2017 Femara (letrozole) Surgery 2/23/2018 Mastectomy: Right; Reconstruction (right): Nipple reconstruction, Saline implant Hormonal Therapy Arimidex (anastrozole)
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Sep 18, 2018 10:07AM Elisabeth_W wrote:

Dani-I was just diagnosed in June at 49. I had a lumpectomy on the left breast and breast lift and reduction on both breasts 7/27/18, both done in the same surgical procedure. The surgical oncologist took out the tumor, then the plastic surgeon did the lift. My PS specializing in reconstruction for BC, so he left the left breast a little larger and the nipple about 1cm lower than the right side so when the breast shrunk from radiation they would theoretically match. Frankly, despite the fact that my breasts had never been perky, and a half cup size different size-wise, I still loved them, so just adjusting to the idea they would go from a D to a C or full B took a couple weeks to wrap my head around. I'm now closing in on 2 months post surgery and still getting used to them. My tumor was estimated to be 5-7mm from ultrasound/MRI, but was 1.2 cm during the actual lumpectomy.

ILC tends to grow in single file lines, and shows up on imaging when those lines cross to create a critical mass that can be seen. I think of it as a pillow with tassels. Everyone is different, but in my case the tassels were as long as the pillow itself. It is this pattern of growth, for classic ILC, that makes it hard to detect. Mine was mammographically occult, I'd been having clear mammograms since 40. I did have one suspicious finding in 2014 and had a biopsy which was clear. However, when diagnosed/biopsied this year, my tumor turned out to be between the clip left from the biopsy in 2014 and the clip from the biopsy this year. So, they may have just missed what was probably LCIS in 2014.

The most important thing I learned early on is that ILC is typically very slow growing. By the time it shows up on imaging it has probably been there 3-5 years if less than 2 cm. That really helped put things in perspective for me. Don't panic. You have time to calm down and make good, informed decisions about what is right for you. That piece of information also helped me understand the pace of treatment, which can feel like a snails crawl when it's happening to you.

I'm a research junkie, and am 60% fascinated to learn all I can about my disease, yet 40% horrified that it's happening to me. I have access to a college library login which has allowed me access to all the medical journals I can absorb, and with a 6 week recovery period had lots of time on my hands to dive into the details.

For me, at 49, what's important is playing the long game with ILC. Post lumpectomy I still have lobular carcinoma in situ (LCIS) and atypical lobular hyperplasia in my left (cancer) breast. That my surgeon didn't remove it is medically appropriate. Both ALH and LCIS are "non obligate precursors" to ILC. They are also considered just high risk markers. It is unknown whether ALH becomes LCIS which becomes ILC in a step by step process; all three are known collectively as Lobular Neoplasia. Some LCIS may be more genetically inclined to turn into ILC, other LCIS may be there for my lifetime and never do so. Researchers are working hard, it appears, to figure that out. But at least in published literature, they don't know yet what flips the switch from an in situ lesion to an invasive cancer. Thus, "non obligate precursor".

I love/hate that: not obliged to turn into cancer. I've seen it described as "indolent" many times. Which makes me imagine a 20 year old living in my basement: he may move out, he may not. Who knows? He may decide to get a job and move out, and leave me in peace. He may decide to hang out forever eating my food and taking over the entire basement. Why he does what he does is a mystery. When he will get off his ass and do something is a mystery.

BUT. The longer we have left to live with LCIS/ALH, the more likely it is we will have another breast cancer from an odds perspective as lobular neoplasia, as a disease category, is often multi focal and bilateral. BCT/radiation with tamoxifen (for those of us premenopausal) is the standard of care. The tamoxifen is very important as it substantially reduces the risk of another invasive BC, particularly in the contralateral breast that isn't being treated with BCT/rads and protection from metastases outside the breast.

One thing I have really realized on this journey (and I'm speaking strictly for me and the docs I've consulted), is they want to give me 10 year recurrence odds. That only takes me to 59. Which isn't nearly long enough. They also focus on detecting and treating another cancer before it metastasizes outside the breast. So their goal is different than mine: I never want to deal with another breast cancer. They are focused more on keeping anything that comes up as "curable" as long as it's in the breast. That's what I mean by playing the long game.

There are many variables to consider when weighing treatment options: sexually functioning breasts, cosmetic breasts/reconstruction options, radiation, if one needs chemo, tamoxifen/AI inhibitors, etc. A good place to start is a list of what's important for you: what do you want out of treatment and what level of risk are you willing to live with in the 5, 10, 15, 20 year time frames. Each step of the way will reveal another piece of the puzzle.

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Sep 20, 2018 02:03PM Dani444 wrote:

ElizabetW, Thank you for your information, and input. I am currently sitting here waiting to hear from my doctor and what she learned from the tumor committee this morning. I feel like I have been trying to figure this out alone, and actually felt better after talking to my surgeon for a good while on monday. She took the time to go over my imaging, in as much detail as possible and share what she is still concerned about and what the steps will be to clarify those points. I am hoping the meeting today gave her the insight she needed.

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 10/25/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Surgery 8/20/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 22, 2018 10:11AM wallycat wrote:

Elisabeth, I am surprised your doctors "gave you" 10 years before a recurrence. My oncologist did not say that. I actually brought it up to her and she said those ideas could be coming from older treatments and older research papers. She's seeing fewer recurrences ....of course, we are all at risk for recurrence or even a new cancer, but I hold hope that with each year, newer drugs, treatments/interventions will help should we need it.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Sep 24, 2018 10:27PM Elisabeth_W wrote:

Hi WallyCat. I wasn't clear. What I meant was that my doctors have wanted to focus the conversation on another cancer or recurrence in the next ten years, which is low for me if I take my hormone therapy and do radiation. But as I age, with the remaining LCIS/ALH and my personal risk factors, my odds increase year over year, and after the ten year mark they start increasing more steeply. The benefits of tamoxifen aren't life long-they last for about 5 years after you complete your course, then taper off. That's one reason for recommending a 10 year course these days instead of a 5 year course, particularly for luminal A cancers (which a lot of ILC cancers are) which respond very well to hormone therapy.

So as I think about the decisions I need to make now for my treatment, I want to reduce my 10+ year risk as much as possible. Focusing on a 3-5% rate of another breast cancer in the next ten years, when that starts increasing to 10% at 15 years and 20% at 20 years just felt like a short term conversation to me.

My point is ILC is different from ductal carcinoma-the risk from ALH/LCIS which is presumed (or known, in my case) to still be in either breast doesn't drop off over time. So the younger we are when diagnosed, the longer we have to live with that year over year increasing risk. This is no different than any woman-every year our odds increase. The question is are they increasing .5% per year or 2%? Over ten years that's a big difference between 5% or 20%. I can live with 5%, but once it starts going over 8% I get twitchy. After all , with ILC we're in the 10-15% minority to begin with. My odds, at my age, of developing invasive breast cancer within 5 years of my first benign biopsy were 6.2% in 2014, yet here I am.

I'm with you-I'm sure great things are in the works and with data gathering techniques and the ability to share that data in the medical community and perform more analysis on patient populations, treatment will get better and better. I also agree-the risk of another cancer is statistically dropping because the uptake of hormone therapy (tamoxifen, AIs, etc.) as a preventative is increasing. 10 years ago, less than half of women took some form of it (I want to say a third, but my memory fails). Today, it's much, much higher-up to 95% in some populations with very low rates of recurrence/relapse to correspond but usually with much shorter follow-up times. I read one recent study where the rate of control with BCT/radiation and tamoxifen was 99% when 95% of the women took tamoxifen. For 4 years. Great number-not long enough. I want to know the rate of recurrence/relapse in that same population at 15 or 20 years. Very hard to do when most medical records were still on paper 20 years ago.

The thing I have to remember is that even with a 20% risk of another breast cancer, that means 80% won't have one. So I'll do what I can today to reduce my risk as much as possible (including the dreaded tamoxifen) and hope to be in that 80%.

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Sep 25, 2018 10:38AM claireinaz wrote:

I don't have much else to add except that ILC has a bit higher tendency to be multi-focal--develop in both breasts rather than one, which is why I had a BMX instead of a uni. And indeed, when the pathology report came back, my surgeon told me that the "good" breast had some dysplasia in it of the ILC type--which could have turned dangerous in the future. It never appeared on any breast MRI (I had two), mammo, or ultrasound.

So I was glad I got rid of as much breast tissue in both breasts as I could.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus

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