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Newly Diagnosed with ILC

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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!

Comments

  • mavericksmom
    mavericksmom Member Posts: 1,128
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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!

  • bighubs
    bighubs Member Posts: 26
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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.

  • needs.a.nap
    needs.a.nap Member Posts: 164
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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!

  • moderators
    moderators Posts: 7,914
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    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:

    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

  • lillyishere
    lillyishere Member Posts: 770
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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?

  • simpop7
    simpop7 Member Posts: 8
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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.

  • needs.a.nap
    needs.a.nap Member Posts: 164
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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!

  • claireinaz
    claireinaz Member Posts: 679
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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

  • claireinaz
    claireinaz Member Posts: 679
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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.

  • moderators
    moderators Posts: 7,914
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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

  • simpop7
    simpop7 Member Posts: 8
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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.

  • bighubs
    bighubs Member Posts: 26
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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.

  • janila03
    janila03 Member Posts: 8
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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.

  • lillyishere
    lillyishere Member Posts: 770
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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.

  • katg
    katg Member Posts: 206
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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.

  • simpop7
    simpop7 Member Posts: 8
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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!

  • katg
    katg Member Posts: 206
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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.

  • claireinaz
    claireinaz Member Posts: 679
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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