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All TopicsForum: Second or Third Breast Cancer → Topic: Genetic tests back in.... no "bad" genes.

Topic: Genetic tests back in.... no "bad" genes.

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

Posted on: May 7, 2018 09:34AM

wallan wrote:

So, my genetic tests are back in and I have no bad genes. The genetic counsellor said bilateral BC due to environment most likely.

Its reassuring she says. For who? My family? My sisters are already being screened yearly.

I feel like I lost at craps. I mean, BC twice? How fair is that? I don't feel reassured. I wish no bad genes meant no risk of recurrance ever.....

wallan



Dx 3/29/2004, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/18 nodes, ER+/PR+, HER2- Surgery 3/31/2004 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 6/1/2004 AC + T (Taxol) Radiation Therapy 12/1/2004 Whole-breast: Breast, Lymph nodes, Chest wall Dx 1/25/2017, LCIS/DCIS/ILC/IDC/IDC: Mucinous/IDC: Cribriform, Left, <1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 3/8/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Fat grafting Hormonal Therapy Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 7, 2018 03:04PM NancyHB wrote:

wallan - BC really can be a crap-shoot. You’ll see from my signature that I had a local recurrence that changed receptor status, plus progression - all with no genetic link. My genetics counselor, though, did indicate there are so many other genetics possibilities that they’re currently researching, it could be something we don’t yet know about. I wish I had a definitive reason so I couldn’t reassure my sister and daughter and grand-daughter; for now I can only encourge awareness and surveillanc

"Be happy for this moment. This moment is your life." - Omar Khayyam Dx 11/22/2011, IDC, Left, 1cm, Grade 2, ER+/PR-, HER2- (FISH) Surgery 12/5/2011 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/19/2012 AC + T (Taxol) Radiation Therapy 6/12/2012 Whole-breast: Breast, Lymph nodes Dx 1/27/2016, IDC, Left, 1cm, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 2/15/2016 Lumpectomy; Lymph node removal: Left Chemotherapy 3/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 7/21/2016 Mastectomy: Left; Reconstruction (left): DIEP flap Dx 1/31/2017, IDC, Stage IV, metastasized to bone
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May 8, 2018 05:57AM wallan wrote:

Thanks Nancy:

I did get my genetics test in the mail today from the lab and it turns out I do have a little something in the NBN gene that is of uncertain clinical significance. The report says that clinical evidence is contrary so they cannot definitely say it if it is pathogenic or not. The lab recommended checking in with the genetic counsellor every 3 years or so to see if the status changed. When I spoke with the genetic counsellor prior to getting this written test in the mail, she never mentioned this mutation. She said there were no bad mutations which is true at this time I guess. She told me my bilateral BCs were probably due to something enviromentally triggered. Sporadic. She did say to keep tabs on genetic research in case new genes are discovered.

NBN change is linked to breast cancer, prostate cancer and lung cancer which is interesting because my father had early age prostate cancer and then 10 years later had another new primary lung cancer which did kill him. And his grandmother and her sister died of breast cancer at 36 and 39 years old.

So I guess I am not out of the woods for an inherited mutation. Sigh... what can you do about it anyways. It may be nothing. Sometimes I wonder why I agreed to genetic testing. I know why... I did it for ease of mind for my sisters and their daughters.

wallan

Dx 3/29/2004, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/18 nodes, ER+/PR+, HER2- Surgery 3/31/2004 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 6/1/2004 AC + T (Taxol) Radiation Therapy 12/1/2004 Whole-breast: Breast, Lymph nodes, Chest wall Dx 1/25/2017, LCIS/DCIS/ILC/IDC/IDC: Mucinous/IDC: Cribriform, Left, <1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 3/8/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Fat grafting Hormonal Therapy Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 9, 2018 01:07AM nash wrote:

I'm on my third bc diagnosis. First primary in 2007 at age 38, local recurrence in 2015, new primary in 2018. Both parents died of cancer (mom had bc), and my dad was an Ashkenazi Jew who died of pancreatic cancer. I look like a poster child for BRCA+, except that I'm not.

I had genetic testing run the first two diagnosis (BRCA both times, BreastNext 17 gene panel the second time), and nothing showed up. I called my genetic counselor after this latest diagnosis, and she said there was nothing new to run. Like NancyHB, I've always been told there is probably something genetically wrong that they just don't have a test for yet.

My parents and I started growing tumors within a few years of each other, so I do wonder if there was something going on environmentally in my childhood home. I grew up in NM, where there had been atomic testing. Not specifically where I lived or at a time when I was alive, but the test site was a few hours away, and who knows about lingering radiation. Maybe because of that, something happened to my immediate family's genes to tweak a cancer suppressor gene or something, as opposed to a mutation that was passed down to me.

Who knows, but I do ponder why on earth I've had bc three times before I've even turned 50, when I've spent a lot of time eating organic brussel sprouts, using green cleaning products and makeup, and exercising like mad.

Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain, Grade 3, ER+/PR+
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May 12, 2018 09:08AM KBeee wrote:

I also have been told I have something genetic they just can’t test for yet.

I do have VUSin CHEK2 gene.

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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May 12, 2018 10:31AM - edited May 12, 2018 07:55PM by Lula73

I had Counsyl's expanded panel done-it checks 36 genes vs just 17. I'm also a multi cancer individual.

-Lula Dx 1/2017, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 2/13/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 3/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/1/2017 Prophylactic ovary removal Hormonal Therapy 1/2/2018 Femara (letrozole)
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May 21, 2018 06:20AM IllinoisNancy wrote:

Hi Nash,

So sorry to hear about your cancer coming back. I know you will knock it down again. I had breast cancer in 2006, 2010 and 2016. I also had NET cancer in 2015. Genetic testing done in 2017 showed I have the ATM mutation and should never of had radiation. It makes the cancer spread which explains why not only the breast but also the skin was involved. You have always been one of my favorites on this site and I love keeping up with you. I know we will both be here for a long time because of our grit:)

Take care my friend,

Nancy

2006 ILC in left breast
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May 31, 2018 11:36PM nash wrote:

Hi, Nancy! Just saw your post. Thank you so much for the well wishes! I agree--we will both continue to slog this out!

You're one of my favorites, too! :) xo

Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain, Grade 3, ER+/PR+
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Jun 4, 2018 08:24PM wallycat wrote:

Nash & Nancy ****waving hi*****

Good to see posts from you ladies.

Nancy, I sent you a PM and hope all is going well....that was months ago and now I hope I sent it to the right person, LOL.


Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Jun 5, 2018 02:46AM nash wrote:

Hi Wallycat! You’re one of my favorites, too! X

Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain, Grade 3, ER+/PR+

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