Atypical Ductal Hyperplasia AND Invasive Lobular Carcinoma

Posted by tdw10 @tdw10, Jun 6, 2023

Hi all,
My first time here. Never did this before. But here goes. I was just diagnosed with Invasive Lobular Carcinoma (ILC) Stage 1, less than 1 centimeter, and Estrogen positive and gene tests negative for Brca and also two other spots identified through a MRI. Mind you, the mammogram and ultrasound did not find anything. Luckily I had the MRI. Had to have MRI guided biopsies on 2 of the 3 spots. Turned out that one is benign and the other is Atypical Ductal Hyperplasia. Has this happened to anyone else? Doctor said that the ADH makes a person's risk of cancer high risk, but that it isn't cancer and I don't need to be worried about high risk because I already have cancer. Still don't understand that. So do I have two different types of cancer?

My original surgeon has indicated that I can have a unilateral mastectomy or lumpectomy with radiation. I told her that I was thinking of a bilateral mastectomy and she said no, she wouldn't do it because her philosophy is to treat the cancer. I am a very anxious person who worries about everything. So I am going back and forth about what to do. I am getting a second opinion in a few days. But if ANYONE has any comments, suggestions or thought, I'd love to hear them.

I'm basically driving myself nuts over all this.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@tdw10 ILC is harder to see on imaging I have been told. It does not form masses but kind of goes in a line, apparently. That's the simplest way I can say it. I had some ILC and it was a factor in my decision to do a mastectomy.

REPLY
@windyshores

@tdw10 ILC is harder to see on imaging I have been told. It does not form masses but kind of goes in a line, apparently. That's the simplest way I can say it. I had some ILC and it was a factor in my decision to do a mastectomy.

Jump to this post

Yes that was what I was told too. If I can ask did you do bilateral or unilateral? We’re you given the option of lumpectomy? Just trying to get as much info as I can

REPLY
@tdw10

Yes that was what I was told too. If I can ask did you do bilateral or unilateral? We’re you given the option of lumpectomy? Just trying to get as much info as I can

Jump to this post

@tdw10 I did two mastectomies, separately, because my docs wanted to see how my body handled one before doing the other. I never considered lumpectomy, frankly, regardless of statistics. Especially with any ILC and lymphovascular invasion. The mastectomy also enabled me to avoid radiation which would have concerned my doctors (lupus). I was told one out of five radiologists would have recommended it. The Dana Farber tumor board's plan was mastectomy (my choice) and aromatase inhibitors. I am 8 1/2 years out.

My non-cancer breast had atypical dysplasia and was full of cysts that were making me uncomfortable.

REPLY

That’s great 8 1/2!!!! I’m leaning to full mastectomy because I just don’t want to go through this every agsin!!

REPLY
@tdw10

You got this too. Mine was not found on mammogram or ultrasound so I’m starting to not trust those tests. It was only found on an MRI. I am really confused because I don’t have ductal cancer. I have ILC and atypical ductal hyperplasia which I’m told are non cancerous cells that can turn into cancer. So I keep thinking full mastectomy. But then I go back to the lumpectomy with radiation. Just confused

Jump to this post

Hello! Just checking in with you. I have an appointment with a surgeon from Dana Farber next Wed and I am ready to go to that next step. Also, want to do the MRI and gene testing. How are you doing?

REPLY

I am in the same situation and am going to push for the bilateral. This is my second bout in the same breast and so far it has not gone to the left but did have a positive biopsy on a left lymph node. My mental health is just as their opinion to just treat the cancer. I am more than my cancer and my mental health will not go easily through this if it comes back a third time. My peace of mind is part of my whole being as well. I finished 12 rounds of chemo and am now waiting to hear from the surgeon.

REPLY
@positiveinma

Hello! Just checking in with you. I have an appointment with a surgeon from Dana Farber next Wed and I am ready to go to that next step. Also, want to do the MRI and gene testing. How are you doing?

Jump to this post

I’m doing fine I guess. Getting my second opinion tomorrow. How are you? I just honestly do not know what to do. Lumpectomy or mastectomy

REPLY
@lissack

I am in the same situation and am going to push for the bilateral. This is my second bout in the same breast and so far it has not gone to the left but did have a positive biopsy on a left lymph node. My mental health is just as their opinion to just treat the cancer. I am more than my cancer and my mental health will not go easily through this if it comes back a third time. My peace of mind is part of my whole being as well. I finished 12 rounds of chemo and am now waiting to hear from the surgeon.

Jump to this post

Ughhh. I’m so sorry. How long ago was your first bout and are they the same type. I don’t know you but you got this!!!

REPLY
@tdw10

Ughhh. I’m so sorry. How long ago was your first bout and are they the same type. I don’t know you but you got this!!!

Jump to this post

@tdw10 I am sending you a private message.

REPLY
@windyshores

@tdw10 I am sending you a private message.

Jump to this post

I don’t know how to respond to you privately. Lol

REPLY
Please sign in or register to post a reply.