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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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Hi! I am so sorry to hear your diagnosis. I just got diagnosed with ILC Stage 1 as well but not the other but so far have not had the MRI. My only suggestion is possibly a second opinion to help with your decision and information. I wish you all the best. Deep breathes.
i had atypia, did lumpectomy. Then another lumpectomy - LCIS then my surgeon told me i can get prophylatic mastectomy instead of taking cancer druga for 5yrs to leasen my risk. sp far my MRI and mammo are normal. But cant sleep with thought os every year i dont know what will happen
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1 ReactionWelcome @tdw10, @pharmmom4 @indy0311 and @windyshores may have some experience to share with you.
While we wait for others to chime in, you may also be interested in these related discussions:
- Anyone else diagnosed with IDC & ILC, at the same time? https://connect.mayoclinic.org/discussion/anyone-else-diagnosed-with-idc-ilc-at-the-same-time/
- Anyone had a prophylactic mastectomy for ADH diagnosis? https://connect.mayoclinic.org/discussion/has-anyone-had-a-mastectomy-for-adh-diagnosis/
- Is it possible to be ER+ in one breast, but have ADH in the other? https://connect.mayoclinic.org/discussion/is-it-possible-to-be-er-in-one-breast-but-have-a-different-in-breast/
I can imagine you're anxious and torn about what to do. Getting a second opinion is a good idea. Getting informed as you are doing is also good. When is your second opinion scheduled for?
This Friday is my 2nd opinion. Thank you for all the links
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1 ReactionI’m sorry. You had to have two surgeries? Why was that? They offered you the mastectomy AFTER your surgeries? Are you saying you would have rather had mastectomy than lumpectomy?
I’m so sorry. It’s really a eye opener isn’t it? Have you met with surgeon? What are your options? I wish you luck and grace to overcome this
@tdw10 I am glad you are having a second opinion. I had mixed ductal and lobular invasive as well as DCIS in my right breast and had a mastectomy. I wanted a double mastectomy but my doc wanted to see how I did due to some other health issues, before agreeing to take off the other breast. I pushed for it a little, because the non-cancer breast didn't feel right. Turns out it had some atypical dysplasia and was full of cysts.
Main thing I want to say is that you have a legal right to symmetry. In other words, at least in 2015 when I was dealing with this, insurance has to cover it.
I have read that some surgeons will very willingly to a double mastectomy and some are getting a lot of requests and are pulling back from it. You might want to also post on breastcancer.org.
I actually got 4 opinions- long story- but encourage you to keep going until you are comfortable with your plan. I am "flat" so surgery wasn't hard. One tip: get a paravertebral block before the surgery and you won't need pain meds for the first days. Good luck with your second opinion!
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1 ReactionIt really is an eyeopener! I am hoping to meet with a surgeon soon but have not yet. I am told that it will probably be surgery to remove the two masses followed by 14 weeks of radiation by one hospital. I want an MRI to see if there are more that I am not aware of. So just waiting to talk to the referred to hospital. Keep us posted. You got this!
Thank you so much for your thoughts. I just don’t want to deal with it anymore and I’m old enough that I’m not attached to my breasts and I’d go flat too. I just don’t know what to do.
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