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Topic: Genetic Testing with Ductal Carcinoma

Forum: Genetic Testing —

ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CHEK2, NBN, NF1, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53, and mismatch repair genes (MLH1, MSH2, MSH6, PMS2, EPCAM)

Posted on: Oct 28, 2020 10:18AM

chiefpilotmom wrote:

I am an "adopted child of the 50's," so I have no family history (and have no desire to open my birth records). Once diagnosed, I had genetic testing done. The doctor's PA called with the results and said only that my "genetic tests were clear." I asked for further definition and was told that I didn't 'inherit' my risk of breast cancer from a family member nor would I likely pass it on to a family member." I literally don't know what that means. I'm between a rock and a hard place with whether to do a lumpectomy with radiation or a double mastectomy and remove the chance of a reoccurrence. Anyone have any advice or comment? Thanks!

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Oct 28, 2020 02:45PM MinusTwo wrote:

chief - basically it means - don't worry about genetically passing it on to your daughter or son or grandchildren. But I don't see how this would impact your decisions about treatment for yourself. You could still have genetic anomalies that would determine what drug treatment might be best - but at this point you're not talking about chemo.

But you need to provide lots more information for us to give useful comments.

Are you saying you have only DCIS? What else is on your reports? Size, hormone positive or negative, Her2, Do you have other health issues you need to consider? Are you in an area where hospitals are overloaded with Covid cases? Do you have someone to help with your care if needed? Do you have insurance issues? How about job issues?

Have you seen a medical oncologist yet? Or just a breast surgeon? Even with "pure" DCIS I consulted with an MO before I did anything. Or have you met with the radiation oncologist to hear his/her take if you go with lumpectomy?

If you go to My Profile, you can add your diagnosis & treatment to date. You may want to consider posting under the "just diagnosed" section. You have a hard choice, but I don't know that genetics play a factor.

I had DCIS and chose a double mastectomy - both gone & finished - no other treatment. Except that once you are diagnosed with breast cancer, you can never be sure it's "forever". I had a local recurrence at two years. Apparently a micromet escaped before surgery & showed up in a lymph node under my collar bone. Only then presented with IDC. Today after chemo & surgery & more chemo & rads & herceptin for a year - I have been NED for 6+ years (no evidence of disease).

I'll look for your follow up since I too am in Texas. Good luck.


2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 28, 2020 09:13PM OCDAmy wrote:

I met with a genetic counselor who spent over and hour with me going over my results. I only had one VUS but she went over everything. I’d ask if you can speak with a genetic counselor.

Dx 2/2017, IDC, Left, 4cm, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2- Surgery 11/15/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant Surgery Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Arimidex (anastrozole) Surgery Reconstruction (left): DIEP flap Radiation Therapy Whole-breast
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Oct 29, 2020 09:27AM Peregrinelady wrote:

Just to be clear, a mastectomy does not remove the possibility of a recurrence outside the breast.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/17/2015 Mastectomy: Left Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/18/2016 Mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 7/31/2016 Arimidex (anastrozole) Hormonal Therapy 7/19/2020 Femara (letrozole) Hormonal Therapy 3/3/2021 Arimidex (anastrozole)
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Oct 29, 2020 08:42PM MinusTwo wrote:

Peregrine - ABSOLUTELY you are correct - as I found to my amazement, And mine was called a "local recurrance" even though I no longer had breasts. I'm grateful that ...so far... I'm NED and I I didn't have mets.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 30, 2020 01:20PM LillyIsHere wrote:

MinusTwo, how did MO explained the recurrence in your node? Could have been undetected cancer cells that metastasized?

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole) Targeted Therapy
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Oct 30, 2020 06:19PM MinusTwo wrote:

No Lilly - all the docs are sure that they got everything. There were large clear margins. And I don't have mets. Just one local recurrence to one lymph node. They really believe that one micro size particle escaped the ducts before surgery and landed in the lymph node under my collar bone - likely corroborated because it was IDC instead of the pure DCIS that was in both of my breasts.

So with that IDC diagnosis & also now HER2+, I did have to have chemo. I didn't have pCR, so after ALND surgery, I had more different chemo. Then rads. Then hercetin for a year.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Oct 30, 2020 08:40PM LillyIsHere wrote:

MinusTwo, so scary but I am glad it was local and you got in on time.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/30/2019 Femara (letrozole) Targeted Therapy

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