did anybody's ILC start as ALH?

Dear Tovah's mom:

Yes.

I had a lump that was originally biopsied years ago and the dx on the pathology report was fibroadenomateous hyperplasia.  The next time that the lump was biopsied at the time of my bc diagnosis, the name changed to flat epithelial hyperplasia, ALH, PASH, sclerosing adenosis, well as many other benign findings too.  Nothing was visible for this lump on my mammo or ultrasound even though it was approximately 3.5cm and it was palpable. 

When I met with my breast surgeon after diagnosis, I asked the surgeon to remove that lump as well because, even though the lump was benign, the name had changed and the lump was palpable.  The size hadn't changed since the first biopsy and my original breast surgeon did not recommend excising it years ago.  I'm glad because it saved me from having another surgery and the PLCIS and TC probably would not have been detected if I had a lumpectomy at the time of the original biopsy.  The pathology report showed that I had Infiltratrating Tubular Carcinoma and Pleomorphic Lobular Carcinoma In Situ with Ductal Involvement in that lump. 

My original BC diagnosis in the other lump was pleomorphic invasive lobular carcinoma and pleomorphic lobular carcinoma in situ.  That lump was originally biopsied years ago and it came back benign (I do not recall the name of the benign finding). The PILC and PLCIS grew in that lump.  My surgeon stated that the lump did not become malignant but that the malignancy attached itself to that lump. My cancer was detected because that lump changed. 

I am SO LUCKY that my cancer was diagnosed and detected early.  Lobular is extremely hard to detect and it is sneaky. My doctors are phenomenal and they saved my life.  I am so grateful for all of my doctors.

Good luck with your decision and with the outcome.  I will pray for you.

I don't know which came first, but when I had my surgery and final pathology, my left breast had ILC, LCIS and ALH. My mother died of BC in the early 90s -- I'm not sure what type she had. I am BRCA1/2 negative. My ILC lump also was not visible on mammograms (I'd had a clean mammogram a year before the palpable lump was detected by my Ob/gyn, who ordered a diagnostic mammogram - which was still inconclusive) - or really on ultrasound (when the surgeon did the ultrasound right before my biospy he said he could hardly see the spot). The ILC did then show up on an MRI that was done pre-surgery.

I'm not sure what all my diagnosises were, but I had lumps and bumps and cysts which required multiple aspirations for years beforehand. The generalized diagnosis was fibrocystic breast disease, although I don't think they use that term anymore, nor was it as benign as I was always told. I had a negative mammogram 6 months before the ILC diagnosis, and had high proliferation rates (44/39%) when discovered.

They're finding a genetic component to ILC, and possibly with ILC and IDC too. My Mom had IDC and so did her sister. I glad you caught it early too. It's going to be hard for me to trust a mammogram ever again.

Dear Tovah'smom:

Wow.  Your mom had a clean mammogram and the next year she was diagnosed at stage IV - ILC.  That is terrifying.  I am so sorry.  I really hope that your situation does not mimic what happened to your mom. 

The waiting is so difficult.  When one does not know, it is easy to conjure up the worst possible scenario's.  I am glad that you will be having surgery for your ALH so that it will give you peace of mind.  Whatever the pathology, at least you will know what you are dealing with and then you can be treated, if necessary.  Since you have a history of BC, a dx at a young age, as well as a strong family history, you need to be proactive. Good luck.  Yes, NYU is a phenomenal hospital with a fantastic team.  (Yes, I did mean Seagate in Brooklyn.)

Dear Lojo and Leslie:

Thank G-d that both of your cancers were detected.  ILC is so sneaky and difficult to detect.  It is really scary. Lojo, I'm glad that the ILC was detected on the MRI.  That is a relief.  Leslie:  I definitely understand why you don't trust mammograms.

I will be praying for all 3 of you.

I wonder if I will ever have peace of mind again?

Good luck to everyone.  Thanks for you posts.

 

Dear AJ:

I am so sorry about your mom.  I am so glad that you had the MRI and that the ILC was detected.  You are lucky that they found it.  I hope that you are at stage 1. I wish you the best as you embark upon your bc journey.  It is too bad that you have become part of this club.  However, please try to stay positive and good luck with whatever treatment that the doctors recommend for you. I'm glad that you found this website.  It is very informative and supportive. I will say prayers for you.