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Just diagnosed, trying to make surgical decisions

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Hi. I was just diagnosed with IDC, ILC, E+, P+, HER2-, 1.3cm & 1.7cm tumors (left breast only), 7% growth rate, Grade 2, staging to be done with surgery. Was initially considering lumpectomy with radiation, but am concerned that I have had ILC for a while and it hasn't shown up on imaging. I have had multiple mammograms, breast u/s, and an MRI with and without contrast. The radiologist was concerned that he can't really see what is going on in my breasts because they are so dense. I am trying to minimize my future risk of recurrence and metastasis and other unintended downstream consequences (radiation), so I am leaning towards a bilateral mastectomy followed by an aromatase inhibitor.

Trying to find doctors that are well versed in ILC is a challenge - they seem to want to treat it just like IDC. Hoping for guidance on how to talk to my doctors about minimizing my risk, even if it means more aggressive surgery up front. Friendly, gentle input appreciated!

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  • moderators
    moderators Posts: 8,228
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    Welcome, @ljnesquik! We're so sorry you find yourself here, but we're glad you've joined our community and hope this place can be a source of support for you.

    You may find some helpful advice and/or guidance in our Surgery forum, as you weigh your options. We know it's a big decision, and understand your focus on reducing your risk of recurrence as much as possible! Ultimately, it is your decision, one only you need to feel comfortable and confident with. Don't hesitate to seek out second (or third) opinions from other doctors and surgeons as well - having different perspectives and as much information as you're able to get can be incredibly helpful in making your decision.

    Also, we want to let you know we offer very supportive, moderated Virtual Community Meetups. There are a number of different groups and times, so if you're interested, please check them out here: Virtual Community Meetups.

    Warmly,
    The Mods

  • mandy23
    mandy23 Member Posts: 111
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    Hi @ljnesquik !

    Welcome to the club no one wants to be part of. We are sorry you had to join us, but glad you found us. Please keep posting as there are usually people who will at least commiserate if they don't have direct advice.

    ILC is definitely elusive! Unfortunately, due to it not being as common, it's harder to find specific info on it. I was dxd with it in 2003 and back then there was even less knowledge.

    Know that this is YOUR BODY and YOUR DECISIONS, regardless of what they may be. In my case, I had really widespread DCIS, which originally was thought was going to be a lumpectomy until they realized how widespread it was. Once they did the mastectomy, they found the ILC which was very very tiny. I considered a bilateral mastectomy, but at the time, I just wasn't prepared for it. I did follow-ups with annual mammograms and MRIs about every 18 months. The MRIs were sometimes, but often NOT covered by my insurance. I needed to do it for my peace of mind. As it turned out, last year I was dxd with BC again, but to my surprise this time it was IDC! Even that was not found early enough to avoid chemo for me this time, as it didn't show up on the mammograms and was only caught on the MRI.

    You might have to do a lot of internet sleuthing to find info on ILC. Since you also had IDC, the treatments for that are going to apply anyway. But I agree that your recurrence ILC risk is higher…..but you never know….I made it 19 years and then it was a new IDC….though the first time the invasive piece was caught really really early, if accidentally.

    Not sure I helped at all…might have just added more mud to the water. I just wanted you to know that you are not alone here. The most important thing is that the decisions are all yours and whatever decisions you make——they are the RIGHT decisions once you make them!

    Take care.

  • lillyishere
    lillyishere Member Posts: 773
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    ljnesquik, I am sorry you have to deal with this. As someone who was diagnosed with ILC myself, I understand your concern and your dilemma if you need to go through a more aggressive approach like DMX. You are correct, ILC loves very dense breasts and most of all, loves to hide from MRI or any other sophisticated scans we currently have. In my case, a tinny ILC was discovered from a biopsy and everything else looked fine however, I decided to remove all breast tissue. My theory is that if the breast can create cancer once, can do it again. 84 genes did not show any predisposition for breast cancer and I am the first on my family line to be diagnosed with BC. After the surgery, ILC was found in the breast, lymph nodes and both breasts loaded with LCIS. I don't want to scare you, I am sharing my experience.

    Also, mentally, if you decide lumpectomy, you need to have MRI and mamograms very often which may create anxiety. I took this one into consideration when I made the decision for BMX.

    Yes, so far ILC is treated as IDC.

  • newfmama
    newfmama Member Posts: 46
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    https://community.breastcancer.org/en/profile/ljnesquik I’m sorry about your recent diagnosis. It is difficult to know what to do when we get the news. I was diagnosed at age 54 with ILC ER+/PR+ Stage 2 with micrometasis in several lymph nodes. I had been having yearly mammograms/US cyst aspirations since age 40 (dense lumpy breasts) at a large cancer center. I decided to switch to a small clinic and “boom” a new Dr found it. I chose to have a BMX and then did sentinel node biopsy on both sides and no reconstruction. I got several opinions and the consensus was no breast tissue meant only a 1-2% chance of recurrence. Oncotype was 19 so I decided to forego chemo and took Tamoxifen/Letrozole for 5 1/2 years. I felt I did the best I could to protect myself. Not having to have mammograms etc every year was a bonus. I’ve been blessed with 12 years but now the ILC has recurred under the arm by chest wall/muscle. The lump and some muscle was removed and I am starting 25 sessions of radiation next week. I will most likely start taking an AI again. I’m hoping for another 12+ years. I will be thinking of you and hope you can make a decision that will work best for you.

  • ljnesquik
    ljnesquik Member Posts: 2
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    I really appreciate everyone's comments. I have decided to do a BMX, surgery scheduled for 10/30. I know my body very well, and I have strong suspicions that there is ILC in the other breast too, although not appearing on imaging.

    I have 2 different opinions from the surgeons on how long these ILC & IDC tumors have been developing. The first surgeon said 'years', the second surgeon said 'months to a year'. If the 1st surgeon is correct, then the yearly mammograms and breast ultrasounds did not catch this for a very long time. Hence my concern about what they may be missing on the imaging of the right breast.

    I really never ever thought I would be on this journey. It is not where I want to be putting my time, energy, and mental focus. But this is what I've been dealt. I am trying to stay positive and motivated, but my energy is simply gone right now. I cannot seem to motivate myself to do the things I normally do. The only thing I've been able to force myself to do every day is to meditate (very poorly), strength train, and walk my dogs. That's it. I am really looking forward to my motivation returning.

    Did anyone else go through motivation issues? I assume it's due to depression & anxiety related to this uncertainty. Thank you again for your support!

  • needs.a.nap
    needs.a.nap Member Posts: 188
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    Hello @ljnesquik. Yes!! Motivation was really hard for me too. I had an extra few weeks before my mastectomy surgery and I had so much I should have made myself do to prepare but I totally lacked motivation and energy. I’m sure my brain was partly shutting down because of all the sudden new stuff I was forcing it to process, plus having so many extra conversations with loved ones and others. That was exhausting!

    I don’t know what’s best. I did try to take extra walks and eat a bit healthier in those weeks and even managed a mini beach vacation … but totally neglected other things. In hindsight I’m so glad I got some long walks on the beach! You are very smart to continue with your strength training and walking your dogs!!! You won’t regret being in as best shape as you possibly can be. You kind of are going through A LOT right now. If you are experiencing anxiety/depression/no motivation … it’s very understandable!!! Everyone emphasizes the need for self care but I’m not good about that … but I’m learning I really need to practice it.

    I wish you all the best with your surgery and whatever comes next!

  • vixielyn
    vixielyn Member Posts: 4
    edited October 2023
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    Learning that ILC has a propensity to be contralateral should have been enough for me to stay with my original plan of bilateral mastectomy. Was persuaded to opt for lumpectomy. DDD breasts, extremely dense, considered significant reduction instead based on images. Images GREATLY underestimated size (final over 10cm). LUCKILY 1/6 nodes only MICROmetastasis. Back in for L mastectomy a little over a week later (“reconstruction” date - planned bilateral reduction). After TC and Radiation felt lump in R. I insisted on MRI. Radiologist wanted biopsy of both areas. She said “lobular keeps us up at night”. Luckily lump is a complex cyst, HOWEVER, calcifications were found to be Lobular Hyperplasia with loss of E-Cadherin. TOTAL BSO Hysterectomy completed 10/4. R breast scheduled for removal on the 22nd! Currently taking Tamoxifen until two weeks prior to next surgery then switching to Letrozole 1-2 weeks post op. Follow your instincts.

    I’ve chosen not to have reconstruction. There’s a manufacturer of VERY realistic look & feel prosthetics callled TruLife. A vendor will scan your breast area and the prosthetic is custom made to fit your chest <3. I don’t hear much mentioned about these. So many are unhappy with their reconstruction results or their implants fail. :( Its nice to know these are available as a non-surgical, confidence boosting solution. I wish you all the very best! Kick ass ladies! Stay strong <3