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Topic: How many ADH/ALH who had lumpectomy but still got cancer later?

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

Posted on: Oct 25, 2019 01:17AM

Utahmom wrote:

Just curious to know how many of us diagnosed with ADH or ALH had the lumpectomy and/or additional meds to keep cancer away but got cancer even after the removal?

DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Oct 15, 2020 01:21AM Utahmom wrote:

Another ADH friend just was diagnosed with cancer. She had ADH come back two times. She did lumpectomies two times. The doctor told her that she would consider mastectomy should it come back a 3rd time, well on the 3rd time, it was cancer.

She is doing well and it has not spread beyond the breast, so this a blessing.

DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Oct 15, 2020 10:38AM farmerlucy wrote:

What a kick in the teeth for her. I’m sorry.

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 15, 2020 12:38PM LovesLiterature wrote:

I might end up starting a topic on this, but I wanted to respond since I have a similar question/situation. In 2016, they discovered atypical ductal hyperplasia With microcalcifications, in my right breast; they did a biopsy and the diagnosis was upgraded to DCIS. In November 2016 I had a bilateral mastectomy. No hormones. After I came out of the surgery the pathology report came back as no more DCIS. However, ADH was found in the residual breast tissue in both breasts. After the whirlwind of expanders and then reconstruction in 2017, it never dawned on me to ask about margins for ADH. All of the research I have done on this topic, comes back as pretty vague—sort of a “non-issue”... it turns out they do not do a whole lot of research or case studies on women who have ADH in their residual pathology post bilateral mastectomy. And now with COVID-19, I cannot even get in to see my surgeon (I have a dent in my left breast that I’ve been worried about—along with a few bumps in non-cancer breast). I wish I knew what the statistics were for ADH found after surgery.

Reconstruction/May 2017. Bilateral Mastectomy 0/3 nodes: Nov. 2016. Additional ADH found after mastectomy. DX: DCIS Right, 1cm, Stage 0, Grade 1, ER+/PR+ HER- Original Dx: ADH July 2016. Excision Biopsy: September 16, 2016
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Oct 24, 2020 02:52PM Utahmom wrote:

I have another friend who had ADH2 years ago after having microcalcs appear and keep appearing. She did lumpectomy and it showed more of the same.

She did genetic profile and her numbers were about 46%. Strong family history. After much discussion and research and multiple consultations, she had preventative mastectomy this year. Turns out ADH had again came back in the short span of time. I believe it was present in both breasts.

She is doing well and says that she is grateful.

DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH
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Oct 24, 2020 02:54PM Utahmom wrote:

in her pathology, there was DCIS and more ADH in just one year.

DX ADH 10/2019 Left, DX 2014 Mild Hyperplasia Right & PASH

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