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Topic: Family history of breast cancer and new information.

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

Posted on: Dec 21, 2018 07:58AM

Smdelve wrote:

hi. I thought I had posted but it all disappeared so if this shows up twice my apologies.

So this is long but I really need some guidnece.

My mom was diagnosed with triple negative stage 3 breast cancer. I started mammograms earlier than the 10 years they recommended age and thank god. At 36 I was diagnosed in right breast triple positive stage 1 breast cancer and dcis at the same time they suspected thyroid cancer but first we did lumpectomy then did radiation’s and tamoxifen then my thyroid was diagnosed as cancer so that was treated with radiation iodine. I did genetic testing and tested negative. 9 years later I was again diagnosed with dcis in left breast (thank god for their close monitoring because my mammo showed nothing four months before but mri caught it small but it grew to 2 cms in a month. So we did the double mastectomy. My path report showed new cancer growing in my right breast again. I again updated my genetic testing and still nothing. A year later my mom was diagnosed with tongue cancer and she was dying so she told me my dad was not my real dad. After she passed I found him and he told me last night his family has a very strong history of breast cancer. Both his grandmothers had breast cancer in their 70s...his mother and sister in their 60s and they passed from it. His mothers sisters had it, and his first cousin had it in her 40s (passed at 50), and 3 of his first cousins had it in 30s and one passed at 40...the other 2 are ok. So my question is should I call my doctors and request new testing or at least talk to them about all this since the first 2 testings were were I did not have this info. It scares me for my daughter. I no longer have breasts so my risk may now be lower. I know even with new info it may not affect gene testing since that hasn’t changed. But there are new genes found I am sure since I was tested two years ago. With most being older maybe that don’t affect us. I just don’t know if I am being a drama queen or I really have reason to be concerned. Thank you

Dx 11/29/2007, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/17 nodes, ER+/PR+, HER2+ (FISH) Dx 2/4/2016, DCIS, Left, <1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 3/23/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap
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Dec 21, 2018 11:14AM illimae wrote:

I would think that new testing wouldn’t reveal anything different but I would definitely tell your MO what you’ve learned and discuss recommendations for monitoring of yourself, your daughter and any other applicable relatives.

My maternal aunt was dxd stage IV, two years later my mom was dxd stage 1, both in their 60’s and genetic testing was negative. Two years after that, I was dxd stage IV at 41, my testing was negative too but the geneticist believes there is something there, just unknown. I now consider family history very important, despite the odds, test results, etc.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, Stage IV, metastasized to brain Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 21, 2018 03:06PM KBeee wrote:

It depends what testing you had. The first time I was tested in 2013, they tested for about 6 variants, which were all negative. My insurance would not cover the full panel testing since I'd already had BMX, and I found out my mom had a VUS in CHEK2 (we have extensive cancer history). I paid $250 for Color Genomics to do the full panel testing and determined I had the same VUS as my mom. I had to pay out of pocket, but it was worth every penny.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/25/2013 Mastectomy: Left, Right Chemotherapy 9/19/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/11/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/22/2014 Reconstruction (left); Reconstruction (right) Surgery 1/28/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Surgery 2/24/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 3/30/2015 AC + T (Taxol) Radiation Therapy 8/24/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Dec 22, 2018 01:06PM WC3 wrote:

I like to know things so I would find out what genes you had tested specifically and see if there are any newer known genes they did not test.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Dec 24, 2018 05:57AM Smdelve wrote:

Thank you. I wonder what was checked...all I recieved was a letter that I tested negative. I think I will contact my breast doctors nurse and see if we can update and talk also how I find out what I was checked for. I appreciate hearing from everyone.

Dx 11/29/2007, DCIS/IDC, Right, 1cm, Stage IA, Grade 2, 0/17 nodes, ER+/PR+, HER2+ (FISH) Dx 2/4/2016, DCIS, Left, <1cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 3/23/2016 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap

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