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Topic: Invasive lobular sisters, help!

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

Posted on: Nov 27, 2019 07:32AM

RuGirl2 wrote:

Hello everyone! I've been lurking here for months but just recently have been feeling completely overwhelmed. I'm hoping someone can give me reassurance that things aren't so bad. My story is complicated so I will try to be brief.

I was diagnosed in May 2019 and met with a surgeon about a week later. The biopsy and scan said an 8mm tumor and the surgeon couldn't feel my lymph nodes so I was scheduled for a lumpectomy followed by radiation July 1. The results of the lumpectomy were that the entire specimen was cancer, 34 mm I also had 2 positive lymph nodes of 5 taken. All margins were positive. At that point, I thought I had to have a mastectomy but my surgeon suggested an MRI so we could see how close we were to getting it all. From the MRI she felt we could get all of it so I had another lumpectomy Aug 12. This time I had 3 positive margins including the anterior (deep) margin, but she said she went as far back to the chest walk as she could. At this point, I was looking at another surgery in Sept when my oncologist brought my case to the tumor board and they said that I needed chemo before more surgery. So I had to quickly get a port placed and a week later I had my first AC infusion. Only the port was kinked! So more stress, more calls and another surgery to replace the port. Thankfully this one works great. I have 7 more Taxol infusions to go (1 in just a few hours) and I have met with a surgeon who will do my mastectomy the first week of Feb. , 3 weeks after I finish chemo. I don't know if it's because I just met with her yesterday and relieved my ordeal this far, but ever since I've felt terrified that Having chemo with positive margins is allowing those cancer cells to spread. Two oncologists have told me that is definitely not the case but my mind keeps nagging at me. Prior to yesterday I was feeling great and always positive. Has anyone ever heard of a story like this? Has anyone had chemo and then the final surgery to clear the margins?


Dx 5/2019, ILC, Left, 3cm, Stage IIB, Grade 2, 2/5 nodes, ER+/PR+, HER2- (FISH) Surgery 7/1/2019 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/12/2019 Lumpectomy: Left Chemotherapy 8/29/2019 AC Chemotherapy 10/23/2019 Taxol (paclitaxel) Surgery Mastectomy: Left, Right
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Nov 27, 2019 08:40AM Moderators wrote:

RuGirl2, welcome to Breastcancer.org! We're so very sorry you had to find us for this reason, but we're glad you've reached out here. We're sure you'll get some great advice and support, and similar stories from other members soon that will help you feel that you're not alone in all of this.

Best wishes, and please keep us updated on how you're doing; we're all here to support you!

The Mods


To send a Private Message to the Mods: community.breastcancer.org/mem...
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Nov 27, 2019 10:05AM JRNJ wrote:

Hi RuGirl2, My process wasn't the same, but I have ILC 2.4 cm with 2 positive nodes and lymphovascular invasion. What state are you in? Does Ru stand for Rutgers? Sounds a little crazy. They should have done an MRI before surgery. ILC is hard to detect, spreads in sheets, and each test I got was worse than the last. MRI finds more than US. I fought for bilateral mastectomy because I wasn't comfortable with ILC being so hard to find. They kept minimizing my cancer, and it kept getting worse. But I think you can take some comfort that they are treating you aggressively now. Better to get the rogue cells first to prevent spreading, than go back and get the local stuff. I had to fight for chemo. One Dr. said no and another said yes. So I am starting CMF on Monday, which is less aggressive than yours. ILC doesn't respond as well to chemo as IDC, so I don't know which chemo is better, I am questioning that myself with anxiety right now. Have they mentioned radiation? I assume you will get that too at some point after chemo and surgery. So take some comfort in doing every that can be done. I had anxiety when they wanted to skip chemo and radiation in early stages.

Pleomorphic Multifocal LCIS, Extranodal Extension, Lymphovascular Invasion. TE removed due to infection Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Surgery 9/24/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/2/2019 CMF Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 27, 2019 10:40AM RuGirl2 wrote:

Thank you, JRNJ! I'm sorry you are going through this mess too. What you said about getting the rogue cells first is exactly what the tumor board said. They seem confident they can clean everything up after chemo but I worry about those margin cells continuing to spread. I have already been told radiation is on the books for me too. The lymph nodes clinched that but then with a positive anterior margin, I'm in agreement. I keep thinking by summer I will be finished with active treatment, but then I quickly worry, "What if they find something else before that?!" The anxiety is unbelievable , isn't it?

As for my name, it's actually a drag queen reference! Drag queens have been a source of strength for me through all this. Anything you want to know about wigs, drawing on eyebrows or makeup in general, they can help šŸ˜„

Dx 5/2019, ILC, Left, 3cm, Stage IIB, Grade 2, 2/5 nodes, ER+/PR+, HER2- (FISH) Surgery 7/1/2019 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/12/2019 Lumpectomy: Left Chemotherapy 8/29/2019 AC Chemotherapy 10/23/2019 Taxol (paclitaxel) Surgery Mastectomy: Left, Right

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