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Topic: 8 year survivor recently diagnosed with ALH

Forum: Second or Third Breast Cancer — For those confronting a new primary diagnosis or undergoing treatment.

Posted on: Sep 15, 2021 07:23AM

Lorial1962 wrote:

Well I didn't expect to be back on here, I am a 8 year survivor. I got called back on my annual mammo this year and that pit has been in my stomach since. This time it's the left breast. The memories come rushing back remembering that unknowns of the first few weeks are paralyzing emotionally.

After the second mammo I was sent for an ultrasound and then a biopsy a week later. The diagnosis came back negative for cancer but positive for ALH. I haven't seen the breast surgeon yet. I had reconstruction in 2014 to equal out the size and correct the damage from the radiation catheter and biopsy. Unfortunately I also have the Allergan recalled implants which my doctor told me "to not worry about unless I have symptoms".

Now that I feel like I'm a ticking time bomb. Does anyone know what the standard treatment would be here? I've heard removal of the precancerous lesions an then estrogen blocker, again. I also had a doctor (gyno) suggest it's time to get rid of the girls and get reconstruction.

My head is spinning and waiting to see the breast surgeon/oncologist seems like an eternity.

Thank you,


Dx 1/31/2013, IDC, 1cm, Grade 1, ER+/PR+, HER2- Surgery 2/19/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/17/2013 Breast Dx IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Sep 15, 2021 12:42PM LivinLife wrote:

I'm not sure about standard of care.... I just want to wish you well and say glad it is not cancer for you! I imagine a lot came rushing back for you! Hopefully you get some information soon about next steps. that will likely help a lot on the emotional end of things - having a plan.....

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/30/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 15, 2021 01:00PM brittonkb wrote:

I don't have quite the same scenario as you but may be somewhat relevant. I had a lumpectomy last April. My initial pathology indicated there was DCIS in the margin. I subsequently switched to a larger cancer center and they had two different pathologists review my info determining that it wasn't DCIS but was ALH. My MO indicated this was normal as ALH can be a precursor to cancer and I obviously did have cancer. I also discussed this with my new breast surgeon this past summer with concern that my initial cancer was ductal not lobular. She did tell me that even with a new ALH finding (without also having BC), they don't do an excision for ALH (unlike ADH) because lobular BC wouldn't necessarily show up where the ALH was found. I did have radiation to that spot though. Something else to add to the list to think and worry about. Please follow up with what you find out from your surgeon.

Dx 4/29/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 3/13 nodes, ER+/PR+, HER2- (IHC) Surgery 5/19/2020 Lumpectomy; Lymph node removal: Sentinel Surgery 7/5/2020 Lymph node removal: Underarm/Axillary Chemotherapy 8/2/2020 AC + T (Taxol) Radiation Therapy 1/19/2021 Whole-breast: Breast, Lymph nodes

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