Newly Diagnosed with ILC
Hi everyone, it’s still feels strange to say that I have breast cancer. I’ve had a long journey with breast screenings, biopsies and surgeries. In 2017 I was diagnosed with LCIS which I was told was not cancer. I was given the option of preventive mastectomy or the watch and wait option as I had no genes for cancer, healthy, and wasn’t ready for something like that. I was told to stay on top of my monitoring because early detection is key.
In December of 2022 my MRI screening was clear but in February 2023 I started feeling some changes. I have a history of dense breast and fibroadenomas so when they said it was dense tissue I didn’t think much of it. In June, I went back again because the area was changing in appearance and painful but the ultrasound said there is nothing there anymore, which I knew was incorrect. I saw my breast surgeon and by the grace of God, he suggested we do a biopsy in his office and it turned out to be cancer. Apparently ILC is a “sneaky cancer” and is easily missed or mistaken on imaging. I wished someone had told me that sooner. I was diagnosed with a 5.5cm tumor, likely stage 3 with micro met in one lymph node. After going through all the should’ve, would’ve, could’ve, I stood on faith that God is with me and got to doing what I needed to do.
Fast forward 3 weeks, I’ve already had my double mastectomy with TE put in. The expanders are the strangest thing to have on your body and I wished my direct to implant had worked but God had other plans. Thankfully, I’ve been down staged to stage 2, tumor size 4.2 cm, with no benefit to chemotherapy. I was told if I have a double mastectomy I wouldn’t need radiation but now they are saying I need a consultation with them to be sure. I hate when things change on me! I was told I would need Tamoxifen for 5, possibly 10 years.
A friend suggested I come to this site and I’ve read through many of the discussion boards. I’ve learned that IDC is the more common form of breast cancer but I’d love to hear from anyone who was diagnosed with ILC. I’d also love some feedback on radiation after mastectomy and how that affected reconstruction. I’ve read many of the Tamoxifen and hormone boards and it is quite scary to think about. My cancer was ER/PR+, HER2-, with Ki67 of 5%. My Mammaprint said I have a low risk of reoccurrence so I’m really trying to weigh the pros and cons of taking the tamoxifen and radiation. I know the most common implant is silicone but I’d love to hear from anyone who chose saline and the outcome. I feel those seem like a safer option but not sure on the results.
There always seems to be so many decisions at every turn. It all gets too much after a while!
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Welcome simpop7,
You have been through quite a lot. Many will post responses I am sure. As one who has had breast cancer three times you will find a lot of support here.
I was diagnosed with ILC in 2018, and was denied a bilateral mastectomy. I took Letrozole for 6 months and quit due to side effects. Yes, ILC is extremely sneaky and I am pretty sure I have ILC cells quietly sleeping somewhere in my body, so after my third cancer, DCIS and IDC, my new Medical Oncologist talked me into going back on Letrozole. So far, 9 months later, I am tolerating it well. I assume you are young thus the Tamoxifen. Definitely follow your MO’s advice! Again, because ILC is sneaky!I have one DIEP reconstructed breast and one implant. I agree, the implant feels weird and I am not a fan. I hate the way it looks and feels but I don’t want anymore surgeries!
I hope you do well and continue to update here. Wishing you the best! You are not alone!
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My wife was diagnosed with Stage IV ILC de novo (mets to stomach, bowel, and spine) in April of this year after having recurring stomach pain which began last fall. She has subsequently had mammograms, MRIs, and Ultrasounds of her breasts and none have shown any cancer. Oncologist believes it's there, and it has obviously metastasized to other areas of her body now, but science can't find evidence of it. So "yes", it is very sneaky. She had zero symptoms of anything wrong until she started having stomach pain last fall. No lumps, no pain, no changes in appearance.
Her cancer is ER/PR + and HER2 Low. So she is on hormone therapy and ribocyclib and so far is responding very well. She recently had an FDG PET scan which essentially found no evidence of active disease. However, FDG PET scans are not particularly helpful for ILC as it is a slow growing cancer and therefore doesn't uptake the tracer in the same way that faster growing IDC cancer does. There is a new type of PET scan out for ER/PR positive ILC called FES PET which uses an estrogen based tracer to detect uptake instead of the traditional glucose tracer. But it isn't readily available everywhere, and we haven't been offered one yet.
Don't ignore future signs your body may give you. If you think something is off, go see your doc and get an answer. The sooner you determine there is a problem and begin treatment the better your prognosis. Our doc said average survival for her type is around 5 years, but like you we are trusting that God's plan for her life will come to fruition whatever that may be.
Sorry that you are going through this, and I hope you remain cancer free indefinitely.
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@simpop7 Welcome!! Thank you for posting your story. I wish you a very good recovery and peace with each decision made. It is overwhelming all the decisions that need to be made!
It’s been almost 2 weeks since my single mastectomy with tissue expander placement and all I can wonder is how anyone can go through a double mastectomy?!! It’s definitely a challenge not using my right arm, being right handed. For all of you who had a double, I admire you!!!
I completely agree with you that the TEs are so alien feeling! I had a few grumpy days of discomfort where I was telling everyone that it feels like a small bowl or plate is sewn into my chest muscle under my skin. Nothing could prepare me for how weird that would feel, especially around the hard edges. I was ready for it to come out! But then I woke up one day and hardly noticed it so I guess my brain has accepted the weirdness. Mine was IDC and I’m sorry I have no wisdom yet to share, it’s all new and I’m learning as I go.
Thank you again for sharing your experience … hearing how others are doing has been very helpful! Best wishes for you to continue recovering and trying to keep your chest still without using your arms too much!0 -
Hi @simpop7, and welcome to our Community. We're so very sorry for the reasons that bring you here, but we're really glad you've found us. As you can already see our amazing community is made up of so many wonderful members, always willing to offer advice, information, encouragement, and support — we're all here for you!
We're sure others will be by soon to weigh in with their ILC experiences. In the meantime, we wanted to share with you some pages from our main Breastcancer.org site on:
- How Does Radiation Affect Reconstruction?
- Radiation Therapy Timing and Breast Reconstruction
- About Breast Implant Reconstruction
- Hormonal Therapy for Breast Cancer - Benefits, types, and timing.
Also, your concerns about hormonal therapy treatment side effects are valid, and very common! Just remember that there are ways to manage any side effects you may experience, including possibly switching to another hormonal therapy treatment that is more tolerable.
We'd also like to invite you (and anyone else here!) to join our weekly In Treatment Zoom calls (Tuesdays, 1pm ET; Thursdays, 6pm ET). You can read about these and register here.
We hope this helps and we look forward to seeing you around the Community as we support you through your care.
—The Mods
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simpop7, as ILC, stage II, I understand your frustration. I was in the same boat of not knowing how sneaky this cancer is. If you don't mind, I would suggest a couple of things I learned. First, get 2-3 different opinions. Try to get at least one opinion from a well-known breast cancer center and oncologist who is specialized in ILC. Second, try to stay away from tamoxifen since it is not as effective for ILC as letrozole is. I am glad you have selected to remove all breast tissue since you don't want to "factory" to produce new ILC.
Did you have nodes positive? How many?
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thank you everyone!
@mavericksmom- is letrozole for pre or post menopausal women? I haven’t heard of it. I am 45 so maybe that has something to do with it.
@bighubs- I’m so sorry to hear about your wife. I will be praying for you both.@needs.a.nap how did you decide on the type of implant you wanted? I’m praying for the day I don’t feel them again but each fill seems to make them more obvious.
@lillyishere- I had micromet in one lymph node. They took 3 others out and those were clear. I’m planning to go to city of hope for a second opinion on the rest of the treatment. It just seems like there is standard of care with cancer and they all say the same thing. Thank you for the input on the tamoxifen. I’ll have to ask the oncologist about what you mentioned.
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Hi @simpop7. Good question! How did I decide? I am planning on a silicone implant eventually, final size to be determined. I don’t know how I managed to decide because I wasn’t thrilled with any option. I wear a size 38H bra and unfortunately was about to lose my slightly smaller side! Although going flat with no reconstruction would have been the simplest, safest option, I just cannot imagine being that lopsided or trying to do a prosthetic of that size. Since I’m having to deal with this one way or another, I might as well go for a nice reduction on my remaining side and overall improvement. But I’m anxious that down the road I’ll end up with a “surprise” cancer in my remaining breast so I’m half planning mentally for that to happen and if that did, my best hope at even vague symmetry would be implants. My plastic surgeon enthusiastically offered DIEP flap but then after pinching my life-long pot belly (which seems generous in size to me) he was like, it’s only enough for one side and even then it will be small. I think because I have a large appendectomy scar that limits how much he could use. Small sounds glorious!! I don’t think he believes me though. I know DIEP flap would potentially yield a very nice result but I was apprehensive about the involvement of that surgery and recovery. Dare I mess with my perfectly fine pot belly? It was half and half really because I’m looking at multiple procedures and recovery times no matter what if you include reduction surgery. In my dazed state of hating all my options but feeling forced to subject myself to discomfort, I sort of left it up to the plastic surgeon to recommend what implant he thinks will be best. I spoke with someone who has saline implants and she’s very happy with hers (they are firm she said), I spoke with another who did DIEP flap for both and she’s thrilled with hers, but I kept thinking I need to plan for maybe eventually both sides and I’d prefer softer so silicone was it. I will admit I was shocked at first to see my little tiny “baby boob” so high up on my chest when I first looked in the mirror standing up. I just kept thinking it’s so abnormally high up on my chest. Sadly, my remaining large, sagging breast could almost pass for belly fat it’s so low. My surgeon definitely has his work cut out for him! Yet I imagine myself having much better posture already without all that weight. I see great potential and can’t wait for the end result!
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hi, I will weigh in briefly. First this subset of bc responds well to hormone therapy. I was menstruating when I was dx and chemo ended that eventually so I took tamoxifen for a year and then had my estrogen checked. That was gone so I took arimidex for a year then bc of side effects I switched to aromasin and magically the side effects were gone. I did the full 10 years and then some. It’s important you know that if one doesn’t work another aromatase inhibitor might be easier.
Secondly ILC may be sneaky bc of the way it grows but it also tends to grow more slowly than other subsets, so don’t let the lymph node thing worry you too much. You should go through the ILC discussions; they were and still are invaluable to me.
Sorry that wasn’t brief! ;)
Claire in AZ
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…letrozole is rx for post menopausal women. I had silicone implants, no trouble, because I had a good plastic surgeon and we had a serious conversation about choices for reconstruction. He checks them every 3 years by MRI.
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@simpop7 letrozole is also known as Femara.
Also, tamoxifen is prescribed for pre- or post-menopausal women. Aromatase inhibitors (like letrozole) are prescribed for post-menopausal women. Click the links for more info on each!
We hope this helps!
—The Mods
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That makes sense as to why they didn’t prescribe letrezole since I am premenopause.
@claireinaz Thank you for weighing in and reminding me of the slow growing part, the lymph node micromet seems to be what puts me on the map for radiation.
@needs.a.nap I didn’t like any of the options either. Seemed liked implants was the “best” option of what was offered. I couldn’t imagine doing the flap and having to recovery from two surgeries. I hope the rest of your procedure goes well and you are happy with the end result.
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Simpop7, not to contradict clairinaz or the moderators but I believe "post menopausal" includes those who are chemically induced to menopause. I say that because my wife was not menopausal when diagnosed (going through what we believe was perimenopause at 45 but could have been cancer interfering with her ovaries), but they prescribed her letrozole with zoladex. The zoladex is a monthly implant in the belly which stops ovary function and the letrozole is an AI which stops estrogen production in the rest of the body. So I don't think it matters if the menopause is natural or manmade, but if your are premenopausal and they aren't giving you something to shut down estrogen production in your ovaries, letrozole wouldn't be appropriate.
At least that's my understanding.
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In Dec 2017 was diagnosed with stage 1 ILC at 51 years old, had a double mastectomy, started 4 rounds of chemo and Anastrozle in January of '18. I had the expanders put in, reconstruction and nipple tattoos (they look great!) and here I am going on 6 years cancer free. Anastrozole really does a number on the bones. I had lower back pain that lasted nearly 6 months and had me fretting the whole time that it was mets. It was just one thing after another on this medicine but my body gradually got used to it and I've been feeling somewhat normal for the past 2-3 years . My mother beat ILC 2 times and she's also doing well at 77. She had a recurrence because her first surgeon reattached her nipples after her mastectomy. They had cancer cells but luckily it didn't spread outside the nipple.
I do have one complaint which I am sick of and will be mentioning to my Dr at my next visit and that is pain in my toes. It normally strikes when I lay down at night, they get contorted and just freeze. I try everything from walking around to placing my foot under hot running water and nothing helps. It usually lasts a few minutes but man does it hurt. I'm sure it's another side effect of Anastrozole but I will be getting it checked. Has anyone else experienced this?
Best of luck to you and all the strong ladies on this forum.
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janila03, interesting you are mentioning pain in your toes. I had terrible pain in my heels while using letrozole and once it was changed to exemestane, one foot was totally fine but the other heel hurt but in a different location. I went to an onco masseuse and she mentioned to me that one of the patients had pain in her big toes. There are so many unknown SE of these meds! Please let us know what your MO is going to propose.
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Janilla03. I have had pain my toes too. Lasts a few minutes and is every so often. I have been on Letrozole since February 2022. The only drug besides Plavix that I am still on.
As to implants, I had a double mastectomy. The breast with the tumor out in Feb 2022. An expander put in because i was to get radiation. Nope. Blood clot. Radiation ocologist says based on the cancer mix i have that 2% of breast cancer patients have, makes it worth less than a 2%, he said if i was his family, it was not worth it.
I had the expander till Dec of 2022. An expander, check out what yours looks like on google as it is an interesting device. Just before it came out in Dec of 2022 it sprung a leak. For nearly 10 months i had one real breast and one expander. In late December i went to 2 implants. My big chance to go big!!! Nope. Skin saving let me use the skin already there. The implants are silicone as recommended by my breast and surgical oncologist. My plastic surgeon i saw for the last time until a year ahead said it takes about 6 months to feel like you do not have funky fake items in your boobs. It is true, with skin saving they pretty much look like my old ones, good for about 10 years, new nipples if i choose in a year.
Each of us will need to experience it. Choose and experience. Stay calm and carry on….you can do it a test, infusion, appt at a time.
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I want to ask more questions about having my ovaries removed. I don’t know enough to understand fully right now but the thought of 5-10 years of being on a medication and dealing with all these side effects seems daunting. I’m sure I would still need a medication even if I do that.
I had my consultation with the RO and she says I should strongly consider radiation because of the micromet in the lymph node. 5 weeks, 5 days/week. Seems like a lot being that I removed my breasts. With lumpectomy they said I had to do the standard 6 weeks, 5 days/week. They also said I only gained a 5% benefit in radiation, which doesn’t seem like a lot considering the possible short and long term benefits.@katg Nothing ever really goes to plan with cancer, huh? Thanks for weighing in on the silicone implants. What type of cancer did you have?
@janila03 so glad to hear you and your mom are doing well! Very encouraging. Kind of funny you mentioned the nipple thing because I was just sharing with a friend how I chose not to spare my nipple even those the surgeon said the chances of my cancer coming back from that was like less than 1% and I wondered if I made the wrong decision. I knew I would worry about that all the time so I think it was the right decision! A few people have told me how great their tattoo nipples look. Something to look forward to!
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DCIXS Stage 2/ER+98%/PR- My tumor was 5.2, so that was my bad marker. A genetic test at COH got me BRCA 2. Cancer is crazy. My tumor when my breast was removed was Her2+. My original biopsy was Her2-. To get good margins around my tumor meant a breast that would not look good. So with that, and the BRCA2. i went with a double mastectory.
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bigpops, didn't see that your post contradicted at all! :) I wrote menopause, but I was chemically induced myself because chemo shut down my periods which were regular still, at 53. But right, Femara is effective when given to women who have stopped menstruating for whatever reason.
I just stopped Aromasin after 11 years.
ClaireinAZ
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Hello! I am new here, newly diagnosed and trying to navigate all this.
I was diagnosed with ILC in June 2024 and opted for a bilateral mastectomy, right breast was healthy. Currently with tissue expanders, waiting for implants in a couple months.
Stage 1A, tumor was 1.7cm (grade 2), high ER+/high PR+, HER2-, Ki67 15%. Genetic testing was all negative. No chemo (oncotype was 13) and no radiation. No lymph node involvement.
I am almost 47 and on tamoxifen (no SE). I keep reading that AIs are better and debating if I should suppress ovarian function and go on AI instead of tamoxifen. Onc is amenable to that but wasn't overly excited about that course of tx. Onc does not rec ovary removal even though I am debating it. I keep reading about reoccurrence years down the road and that is scary especially I am/was early stage (seems like that does not mean much in this situation). I am not planning on having kids - just trying to figure out the best course of action for the best long term prognosis.
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Hi @myhatanner. I was also diagnosed this past June. I'm a little behind you in genetic testing and oncotyping. They were started last week so I'm a couple weeks out from finding out the results. I haven't started any systemic therapies either. Meeting with a RO tomorrow morning. I didn't have any positive lymph nodes but there was a "seed" in one of them. It still counts as N0 but then has a subscript of i+. I am considering ovarian suppression and going on an AI. I'm 50 years old but still premenopausal. I'm getting a second opinion about systemic therapies next week at Dana Farber because the MO I met with last week disagreed with me that ILC comes back late, can metastasize to different sites than IDC and seemed confused and unprepared when I talked about my multi-focal disease. I'm happy for you that you are already taking something. I feel like I'm like a sitting duck here with my square boobs (tissue expanders, lol) and no systemic therapy.
I'll let you know what the oncologist at Dana Farber says to me about being premenopausal and what type of estrogen suppression I should be on.
Take care!
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Hi @pharmdee - thank you for responding to my post. This has not been an easy journey. Did your MO not recommend taking something now, like tamoxifen? It has not been as bad as some people have said. Some SE but so far tolerable. Although I have read that AI are better for ILC which is why I am considering ovarian suppression. I am also going for a second opinion with another MO. I just want to be sure I am on the right path especially since I keep reading that this can sneak up on you again many years down the road. My current MO, RO and BS did not feel that this would reoccur but when I read things that say otherwise it makes me nervous. I will let you know what the 2nd MO says. We can compare notes! Good luck and keep me posted!
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@myhatanner The MO said he would recommend chemo, radiation, and tamoxifen. I even asked if I should start tamoxifen now and he said no, that's after chemo. He said only if my RS was very low "because of the size and grade of your tumor," he would recommend chemo. I have read that an AI seems better than tamoxifen, but there needs to be more studies. And just because tamoxifen failed for a few patients doesn't mean it will fail for you (us). Also, there's a big possibility there's no cells anywhere anyways, and we could just skip all the drugs and get on with our life... but I'm not that brave.
Fyi my sister was on tamoxifen and had very little side effects, then did the ovarian suppression and and AI, couldn't tolerate AI so got her ovaries out. She was diagnosed at 34 with grade 3 IDC and is doing great now 14 years later.
We will definitely compare notes!
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@pharmdee That is so great to hear about your sister doing well many years later! That is wonderful!!
I am not brave either to not take anything. I figure if the SE are tolerable then may as well take it for as long as medically possible. Just need to figure out which is better for me, tamoxifen or go the AI route. My current MO is totally against removing ovaries, doesn't want me to fall into an abrupt menopause and with the potential issues that brings, but she is potentially open to the ovary suppression. A second opinion will help me decide (hopefully!) which path to take and who to take it with.
Stay strong, this is not easy, but you will get thru it like a boss!! 😎
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I had a breast reduction 2/23, DCIS was found in the right breast in 2 foci, small, 2mms. Also Atypical Lobular Hyperplasia was found in both. I opted for a dbl nipple sparing mx 5/23. After the mast a 4mm ILC was found in the left breast tissue. I had immediate reconstruction with SGAP flaps at The Restorative Breast Center in New Orleans. They specialize in natural flap reconstruction. I am 64, so post-menopausal. The surgery was a challenge, I cld not get implants due to allergies, I just cld not go flat either. I am happy with my reconstructed breast from fat flaps. I already have osteopenia. My Med Onc said he has never heard of an ILC being found so small. I had clear mammograms before the Reduction surgery. The ILC was Stage 1, Grade 1, HR+ HER2-. No nodes or lymphovascular invasion. I already have such a decrease in quality of life r/t to being a very thin menopausal woman. My estrogen levels are almost nothing as it is. Progesterone level low, as well as testosterone. Have vaginal atrophy already, using vaginal estriol cream for that. I went to a Functional Med Onc and am doing many other therapies. I def think about this all the time though. A friend of mine had such bone pain and mental issues was commmitted to a psych ward on the AI meds. I already have anxiety r/t menopause as well as insomnia. This has been a trip. Sorry for all going through BC. ILC being sneaky is a curve ball it seems. Trusting God to direct my path and for my health/healing, I am open to new meds, if I can tolerate them. I did briefly took letrazole. Not good. Prayers to all.
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@Bchmom03 I'm so happy for you that they found all that early! That's amazing! I feel like you're good, no more therapies needed. Keep the faith!
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@bchmom03, I am glad your cancer was caught early. The ILC found in my breast was 3mm as well however, 2 out of 5 nodes were found positive.
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@myhatanner Hello again. I had my second opinion today and it went very well. He was very knowledgeable and now I feel like I am in capable hands. Luckily, my oncotype also came back showing that chemo would not be beneficial. The radiation oncologist didn't recommend radiation when I saw him a week or two ago, and neither did my new MO. I am on tamoxifen now from the 1st MO and the new one also suggested staying on that for now. He is also leaning toward ovarian suppression for me. He wants to get the pathology back from his hospital to make sure everything comes back the same compared to the hospital I had the surgery at. He didn't seem to think an AI was necessary. I did ask him if he believes ILC becomes resistant to tamoxifen and he said that was pre-clinical data I saw. What I understood from the appointment is that bone marrow suppression and an AI is "better" but is probably not necessary for me and I should be fine with tamoxifen and Lupron. I'm 50 so will probably start menopause soon anyway. I may also be put me on Zometa, the infusion that strengthens bones and prevents bone mets. I'm meeting with him (or his PA?) the beginning of January and we'll start Lupron and possibly Zometa then. I figure I can change my mind at anytime and start an AI after being forced into menopause if I want.
Looking forward to hearing about your 2nd opinion.
Take care!
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@pharmdee that is all great news! I am glad you are on Tamoxifen now - I am sure you are feeling better about being on something. Did he say why he recommends ovarian suppression vs just going into natural meno?
I had my 2nd opinion last week. I will transfer my care to this new MO. She was a lot more knowledgeable as well compared to the 1st MO.
She said I *could* do ovarian suppression if I was really for it but she did not think that it was necessary. Her reasons were 1. even though AIs are about 3% better than tamoxifen, she felt due to the pathology of my tumor that it would not make that great of an impact long-term; 2. she was worried that AIs would bring their own set of SE that could be hard for me to tolerate; 3. putting me in a fast and furious chemical menopause would bring on a lot of unwanted side effects. I think, for now, I will stay with my current tx plan. She did say that she has seen ILC patients with no reoccurrence and then she has seen some that have had reoccurrence after 15 years. Not sure what makes one clear and the other not.
She does want to do yearly bone density scans since tamoxifen can cause bone loss if you are premeno as well as do some liver tests, apparently it can cause a fatty liver. She said that there are no preventative yearly tests that need to be done moving forward (I asked if anything would need to replace the mammo) other than my regular yearly appts (ob/gyn, cbc, physical etc). She did say a breast mri would be needed every 2-3 years to make sure there are no implant ruptures but no other monitoring or preventative testing. Not sure how I feel about that since I had NO idea anything was wrong in the first place.0 -
@myhatanner My doctor is being slightly more aggressive than your doctor because, remember, I had multiple foci of ILC causing me to be T2. You're T1N0, I'm T2N0 (i+). If I was where you're at I would probably also do tamoxifen and natural menopause. I may still change my mind and forgo Lupron. I'm in no rush. There are things I'm hoping I can do next year that I couldn't do this year because of surgeries and such. I'm not sure I want to do them going through abrupt menopause.
Thank you for all your input. You're really helping me weave through this maze.
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@pharmdee you will have to keep me posted on how you are doing if you decide on ovary suppression. To be honest, I am still leaning that way, but going to give tam a try for now.
I think it is a great idea to take 2025 and make it the year of YOU and do things you wanted to do this year but couldn't! It is so important for us to continue to move forward and to continue living the lives we envisioned for ourselves.
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