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Topic: Diagnosed with ILC today

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

Posted on: Nov 24, 2020 10:59AM

Aviphotos wrote:

Suspicious 1.8 spiculated mass found in routine mammogram a week ago, followed up with additional mammogram US and needle biopsy on Thursday. Got call today confirmed ILC ER+/PR+ both 90%/HER2- Ki67 of 14. Scheduled for MRI on Monday. I was warned they expect it to be bigger in mammogram.

I thought I was ready for a diagnosis. I've been reading forums since last week. I wasn't. Not even close. I've dealt with a terminally I'll child, I've weathered hard diagnoses before. Even that was so much easier, I could be in charge, make decisions. Right now, I feel completely powerless. I know it will get better after MRI and meeting my surgeon.

I just finished wrapping up moving my mom to PCB Florida, my 3 adult boys (19, 22 and 24) live in Oklahoma City area and my dad lives in Santa Fe, NM. I had just bought a travel trailer and intended to spend the next few years living on the road and having a grand adventure. Now I'm looking at trying to figure out where to live and get treatment and parking my trailer at my dad's to store it while I battle this.

I know I have a lot of decisions facing me soon. I'm trying to lean in and absorb everything but feeling overwhelmed tonight.

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Nov 24, 2020 02:43PM AliceBastable wrote:

Try not to get too far ahead of yourself at this point. Your diagnosis and numbers look pretty good. If you get a lumpectomy, most women have a quick and uneventful recovery. I had the long course of radiation (33 sessions) and except for a bit of pink-to-red on my collarbone and dry skin, I had no side effects. You'll find scarier stories on here, but remember that for the most part, people who don't have any problems don't post much, if at all, and many don't join forums in the first place.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Nov 24, 2020 02:56PM Moderators wrote:

Welcome, Aviphotos. We're so sorry you find yourself here! It's so very easy to get overwhelmed by this all, particularly in the early days and weeks. Just take it all one day at a time. We're here with you every step of the way!

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Dec 10, 2020 08:48AM beach2beach wrote:


Did you have the MRI? What did it show? Don't give up on that road trip yet!!! I have 3 kids nearly the same,,25,23 and 19. You are more resilient then you think, especially after what you said you have already been through.

I chose a double mastectomy just for my own piece of mind and went straight to implants. No rads or chemo. I recovered well and quickly without issues. Wait until you have all the info, recommendations and suggestions and then go with your gut.

Please let us know how you are doing.

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 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 10, 2020 09:58AM Aviphotos wrote:

Thank you! It's been a whirlwind getting my trailer ready to store and figuring out what to bring with me to Florida to my mom's (she just moved here a few weeks ago).

MRI was a great result showing no other masses besides the 1.5x1.5x1 cm mass in my left breast. Waiting on genetic testing now and see my new doctor in Tampa at Moffitt, Dr. Czerneicki, the first week of January. Since it's slow growing i decided to take a few weeks to get settled here and enjoy the holiday with my family.

I'm still undecided on Lx vs Mx until I meet with my new treatment team and hear what they recommend.

Right now I'm in recalibration mode to tackle this and make the most of my little detour! I've already found a great place to do yoga and be around positive energy and I'm soaking up the peaceful ocean energy as often and as long as possible each day.

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