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Topic: ILC / 3 Nodes - what is the significance?

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

Posted on: Sep 27, 2019 12:20PM - edited Sep 27, 2019 07:24PM by JENT1972

JENT1972 wrote:

HI. I have been reading ILC info on this site for months, but was afraid to sign-up. After seeing my MO yesterday, I thought it was time to reach out. I went into my BMX surgery thinking I had 2.1cm and 1.0cm tumors ER/PR+ (90/90 for one tumor and 100/100 for another). I was also HER2- with no nodal involvement showing on CT, US, or MRIs. When I woke-up, they did do the BMX, but I found out that a sentinal node had tested positive and they took the rest (level II aux). End result was that 3/21 nodes taken were positive (largest .5, did not go through LN = no extra capsular involvement / 2 LN were Macro and 1 was Micro). There was also a 3rd tumor in between the other two and very little ones scattered around at .1, etc. Yes, there was lymphovascular invasion. Oncotype was sent out - not back yet (I understand the issue with that and ILC). Surgeon says I was Stage 2B after surgery. Only Atip in my other breast.

Here's where I would absolutely love some input. I went to my MO yesterday and he said that I automatically get Chemo because of the LN involvement. He does not know why the surgeon sent out for the Oncotype if there was LN involvement. Then he started talking about ports, etc. and said I would have radiation after and then endocrine therapy. There was no other discussion - just if there are LN, then right to Chemo. No % of recurrence and how Chemo would help, no lobular discussion (I thought i read that Chemo does not always work well for lobular), etc.Just if you have any positive LN, then you have to have Chemo - end of discussion.

Do any of you know if this is the normal way of doing things? I have been crying on and off for about 24 hours, very scared, and this is the first I have heard of a lot of this. Should I get a second opinion at a larger university-type hospital, and if so, what should I be asking about? Does the Oncotype matter in my situation? I am

DX 7/2019; BMX 9/1/2019; 3/21 nodes (micro, 2 macro)
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Sep 27, 2019 01:17PM Moderators wrote:

Hi JENT1972, and welcome to,

We're so sorry you find yourself here, but we're really glad you've found us. You're sure to find our Community an incredible source of advice, information, and support -- we're all here for you!

While you wait for the ever-helpful responses from other members here, we thought you might like to check out this page from the main site on Who Gets Chemotherapy? to help explain why this option was likely recommended to you.

We hope this helps and that you get some direction and answers soon. Please let us know what you decide. We're thinking of you!

--The Mods

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Sep 27, 2019 03:22PM Meow13 wrote:

Oncodx claims it is suitable for up to 3 positive nodes. No harm in getting the extra information from them to help with making a decision. It never hurts to get a second opinion. It should be encouraging that you are strongly er and pr positive. Did you get a grade? Nottingham score. I wouldn't get too over worried about lymph node involvement not as important a prognosis indicator as it once was. Good luck.

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Sep 27, 2019 07:19PM - edited Sep 27, 2019 07:25PM by JENT1972

Thank you for responding! He did not mention a grade at all - just the things listed and because the Lymph Nodes were involved that it would have to be Chemo. I did try to bring up lobular, but he said well with Lymph Nodes you automatically get Chemo. When I asked him what type of Chemo, he went through the history of Chemotherapy he rattled of names, but had no idea what would be used. He mentioned that we could do it once a week for 12 weeks or every other week,etc. It was all generalities. I have read what other people write (e.g., the Oncologist described that it would help reduce my recurrence risk by X, etc.), but he did not do any of that. I think he just wanted me blindly to follow whatever he said and go get a port put in. There was nothing specific to my situation other than his mentioning the Lymph Nodes. I think I will have to start shopping for a second opinion asap. Is there something I should be asking about grading - does that impact Chemo?

DX 7/2019; BMX 9/1/2019; 3/21 nodes (micro, 2 macro)
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Sep 27, 2019 11:32PM - edited Sep 27, 2019 11:36PM by Meow13

There is a belief that higher grade cancers may respond better to chemo since faster growing cells are affected. You are highly hormone positive so tamoxifen or AI drugs are probably recommended.

You may want to join some of the chemotherapy threads there are so many people that have experience with the different chemotherapy drugs.

I had one ILC tumor and one IDC, my oncologist didn't seem to be concerned he was mostly concerned I was pr negative. ILC is very different from IDC you may want to ask about how that effects your treatment and if any additional diagnostic screenings are recommended.

There are some good resources on BCO, member johnsmith has done alot of research on ILC. You may want to PM him, haven't seen him active in awhile.

This is the last thread he posted on earlier this year

I will bump it to the active threads.

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