Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Breast Cancer Support Group.
Connect
It is hard to know which way to go since so many share that they end up dealing with the cancer down the road or have to monitor it every 6 months. Go with your gut after getting all facts and I am going to do the same. We've got this!
Did you see the message? The "reply" is on the top.
I found a lump back in May, didn’t show up on mammogram but luckily I was sent to have ultrasound. Radiologist couldn’t see much so he did biopsy and said it looked to be cancer. Found out it was invasive lobular carcinoma stage 1. After MRI i was told there was 1 tumor-4cm and another 1cm. Chose to have double mastectomy which was done on Monday. Mine is ER/PR+HR2-. During surgery I was told margins and lymph nodes were clear. 2 days ago surgeon called with biopsy results stating lymph node had “very few cells” in them so now I’m waiting to find out Onco score for next steps. They also said healthy breast had stuff in it that could potentially turn into cancer where MRI showed nothing. It’s scary, I’m only 52 and have no cancer in my family at all, and it sucks.
-
Like -
Helpful -
Hug
6 ReactionsI had two separate mastectomies and the second one, which was the non-cancer breast, had atypical dysplasia.
My tumor in the first breast was mixed ductal and lobular. Lobular is hard to see in imaging because, as it was explained to me, it sort of forms a line instead of a mass. I try not to think about it. I did letrozole for 5 years and am 8 1/2 years out, had grade 3 w/lymphovascular invasion but Oncotype was 8. Hope yours is good too! Let us know...
@svelasquez1, you might also appreciate this related discussion:
- Just diagnosed with invasive lobular carcinoma (ILC): Any advice? https://connect.mayoclinic.org/discussion/invasive-lobular-carcinoma/
How are you doing? Did you get the results of your onco score? What are your next steps?
So happy your doctor insisted on a biopsy! My ILC was 1.8cm and I had lumpectomy at 57 yrs but totally understand given the size of your tumors that a mastectomy was called for! I just can't believe even MRI did not pick up anything in the "healthy" breast! Very scary and keep the faith as with any luck the radiation can take care of the cells in the lymph node. My margins were not all that great as one was less than 1mm but radiologist said the radiation would help with that. Good luck - xoxo
I too was diagnosed with invasive lobular carcinoma. Mayo Fl took two areas out one that they knew was cancer from biopsy and another they were suspicious of even though biopsy said negative ,it did not have cancer. I had clear margins and no lymph node involvement. No genetic history from the genetic testing . Waiting Onco score. The hardest mental part is waiting this Onco score. Prayers your way. Please keep posting as there aren’t many post about invasive lobular carcinoma.
-
Like -
Helpful -
Hug
1 ReactionI have ILC, and Lupus. Diagnosed at NWMH in Chicago, but went to City of Hope for 2nd opinion. They were shocked ILC was found so early (stage 1) through a mammogram/ultrasoud follow up. Want bilateral masectomy PERIOD! If a doctor refuses I will fire them and move on. This is my body, and my life. I don't want to walk on egg shells for the rest of my life- wondering if I will get cancer again. I will do all I can, and if it comes back after doing all I can- I will deal with it. However- I don't want to regret letting a doctor pressure me or dictate my decision. I will listen, research, speak to others, but ultimately- I WILL make the final decision.
In addition to ILC, and Lupus-- I have seizures. I must be careful because the hormone drugs impacts my seizure meds (Lamictal). This is quite a journey, and I Pray for strength daily 🙏
-
Like -
Helpful -
Hug
3 Reactions@leonielaw I have a younger family member on Lamictal for seizures. I suppose, at least, that hormone levels will be steady (undetectable according to studies) so once the initial adjustment is made, Lamictal levels will be stable. At least I hope, for you!
We have a legal right to symmetry. So we have a legal right to double mastectomy, whether done all at once or one at a time.
Hello, this is 1st time I reached out to a support group. I am so sorry to hear this!! This is the scariest most difficult experience of my life
-
Like -
Helpful -
Hug
1 Reaction