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Atypical Ductal Hyperplasia AND Invasive Lobular Carcinoma
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.
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@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.
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
@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.
That’s great 8 1/2!!!! I’m leaning to full mastectomy because I just don’t want to go through this every agsin!!
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?
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.
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
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!!!
@tdw10 I am sending you a private message.
I don’t know how to respond to you privately. Lol