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Topic: ALH and sister w IDC

Forum: High Risk for Breast Cancer — Due to family history, genetics, or other factors.

Posted on: Sep 16, 2018 11:32AM - edited Sep 16, 2018 12:10PM by Forever1

Forever1 wrote:

Hello, I am new here. I have read an extensive amount of postings though and have learned some good information.

My Sister, who was being watched for DCIS decided to get a BMX after yet another dear friend was dx with an invasive cancer of breast. My sister had her box 4 weeks ago and her pathology showed that there were 2 small invasions that they called micro invasions.

I am 56 and had not had a mammogram for three years (yes, stupid of me) I was in a whole lot of emotional pain from the love of my life, my Husband died of brain cancer coming up on three years ago, and I was just gong through the motions of life.

My Sister would not stop bugging me and so I went had had the Mammo. I was called back for micro calcifications and because i have dense breasts and obviously because of my sister's dx. Next was a vacuum assist biopsy which showed:

ALH, Sclerosing adenosis, columnar cell changes. I was seen by an Oncology BS who drew a line through the SA and CCC and circled the ALH and said that the ALH was the only thing of concern. He recommended a lumpectomy. all the reading I do on what i would consider some reliable medical sites down play ALH, except for a few papers dated in last few years that show data that ALH can often be found with DCIS and also invasive types of ca. I really doubted the need for an excisional bx based on so much information out there that down plays ALH.

But then i remembered that the same breast in question has been bothering me for quite some time. Intermittent sharp very brief stabbing pain, sometimes a feeling of fullness and when really looking at my self in mirror I notice that the breast in question is just a little larger than it has been in past. I did read that SA can cause pain and so again, I wonder how necessary a surgery would be for something that seems not a big deal (ALH)

my question is are there any members that had only ALH that a lumpectomy found something more?

Thank you

Edit: I have had 2 spots of basil cell carcinoma removed from my chest over the past 2 years. However, I was told at that time by the dermatologist that it very rarely spreads to any where and he repeated very rare.

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Sep 16, 2018 12:24PM MelissaDallas wrote:

In about 20% of the excisions for ADH there is an upgrade in diagnosis for DCIS, or even invasive cancer found in the area.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Sep 16, 2018 03:44PM Forever1 wrote:

I have ALH. My Sister had DCIS which after mastectomy, pathology showed IDC. Any stats on ALH upgrading?

Thank you

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Sep 16, 2018 04:26PM Ingerp wrote:

I had ALH about 10 years ago and my research said the same thing—that there’s about a 20% probability of something more serious nearby. I thought and thought and had it done (with no other findings). It’s a very simple outpatient surgery with a quick recovery.

I *can* tell you to keep up with your mammos going forward. I was about 18 months late when I got the DCIS dx two years ago. I don’t think it would have changed the dx but I do think the area would have been significantly smaller.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Sep 17, 2018 02:07AM Forever1 wrote:

Thank you for the information. I appreciate your time.

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Oct 1, 2018 03:50PM Forever1 wrote:

Update: Pathology on my excision biopsy. Everything but the kitchen sink on this one

Comments anyone?

--- Clinical History ---

Preop Diagnosis: Atypical lobular hyperplasia of left breast. [N60.92]

Medical History: Abnormal finding on breast imaging and basal cell


---Final Pathologic Diagnosis---

A. Left breast, needle localized excision:

- Atypical ductal hyperplasia

- Atypical lobular hyperplasia

- Minute intraductal papilloma, sclerosing adenosis, columnar cell

changes, and apocrine metaplasia

- Biopsy site changes

B. Fibroadipose tissue, left breast anterior-inferior margin,


- Benign breast parenchyma with sclerosing adenosis

Comment: A microscopic evaluation of the surgical resection margin was


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Oct 1, 2018 04:08PM farmerlucy wrote:

I had ALH and ADH found on excisional biopsy. My initial symptom was nipple bleeding. I insisted on a preventive mastectomy. IDC was found in that pathology. My breasts were extremely dense and difficult to image, although something of a similar size in the same area was seen on a pre-biopsy MRI. It was missed or passed on the excisional biopsy.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Oct 1, 2018 04:28PM - edited Oct 1, 2018 04:31PM by Forever1

Thank you for the reply farmerlucy. There seems to be some of down playing the ALH and ADH however, i keep running in to people in my life affected by it: My little sister had a mastectomy just in August. She was dx with ADH years ago and was "watched" until this past July when it went to DCIS. Even then she was told it was contained. After a good deal of painstaking thought and taking in to consideration that our cousin (our Mom's niece) died from BC along with and becoming tired of always waiting for results from mammon and bx she chose a masectomy just his past August. Well.... the surgeon admitted her surprise to find IDC in the breast. And then there is my Manager at work.. same thing ADH, 1 x year Mammo and 1 X year US.. for past 4 years. until last December : IDC in the opposite breast

Anyway I have things to think about. Not the type to make rash decisions

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