Topic: My genetic testing negative, Grandma just diagnosed

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

Posted on: Nov 26, 2021 04:18AM

Posted on: Nov 26, 2021 04:18AM

melbo wrote:

one day I suspect they will have all the genetics of this mapped out, but we’re not even close right now. I was diagnosed last summer at 42 with no family history. They did genetics testing due to my age, but nothing showed up.

My mom told me yesterday that her mom was just diagnosed. She’s 85 and has dementia so the best case scenario is very advanced local disease (it’s about to come through her skin and is in both breasts) but realistically it’s probably stage 4 and with dementia she will be very difficult to treat. Just getting the biopsy required twilight sedation and she was very combative throughout. It’s pretty darn likely that she will die of breast cancer in the next year, which of course sucks.

As sad as that is, I’m worried because my mom is also squarely in the sights of this damned disease and I’m worried about her. Bleh. But she is a nurse and has run the clinical trials program for her hospital for years. She knows the risks, she knows the signs, and she knows the importance of regular screening. And now with the proven family history, I’m sure she and her doctors will be even more careful with her tests.

There is no real use borrowing trouble. But i wanted to share my worry somewhere, with people who understand the worry, even as we realize there isn’t a whole lot we can do about it.

Diagnosed right before my 42nd birthday. One husband, two dogs, one cat and no kids. Dx 7/16/2020, IDC, Left, 2cm, Stage IIA, Grade 3, 1/7 nodes, ER-/PR-, HER2+ Targeted Therapy 8/7/2020 Herceptin (trastuzumab) Targeted Therapy 8/7/2020 Perjeta (pertuzumab) Chemotherapy 8/7/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/20/2020 Lumpectomy; Lumpectomy (Left); Lymph node removal; Reconstruction (Left); Reconstruction (Right) Radiation Therapy 1/31/2021 Whole breast: Breast, Lymph nodes
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Nov 26, 2021 07:52AM aram wrote:

Melbo, I am sorry to hear about your grandmother and I totally understand your worries. This damn disease....

Dx at 40, BRCA1 Dx 2/5/2021, IDC, Left, 1cm, Grade 3, ER-/PR-, HER2- Dx 2/5/2021, IDC, Left, 3cm, Grade 3, ER-/PR-, HER2- Chemotherapy 3/9/2021 AC + T (Taxol) Targeted Therapy 6/1/2021 Herceptin (trastuzumab) Targeted Therapy 6/2/2021 Perjeta (pertuzumab)
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Nov 26, 2021 09:31AM salamandra wrote:

My grandmother (diagnosed elderly, survived and died of other causes) had it, my mother (diagnosed mid-50s, died) had it, and I had it (diagnosed late 30s, surviving so far) also had it.

That is 100% of the women on my maternal side in my lifetime (we're a small family). But the genetics came up with nothing for me. And that really is statistically possible too.

Wishing all three of you the best! What can we do but enjoy each other for whatever time we have, long or short.


Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/17/2018 Lumpectomy; Lymph node removal Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/2/2018 Whole breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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Nov 26, 2021 09:46AM melbo wrote:

you’re right Salamandra it also could be pure chance. The phrase I see here all the time is the biggest risk factors arebeing female and getting older.

Only time will tell for my mom and only time will tell for the genetic research. My mom is one of 4 girls and I have 4 female cousins on that side — so far my grandma and I are the only ones to have it.

Diagnosed right before my 42nd birthday. One husband, two dogs, one cat and no kids. Dx 7/16/2020, IDC, Left, 2cm, Stage IIA, Grade 3, 1/7 nodes, ER-/PR-, HER2+ Targeted Therapy 8/7/2020 Herceptin (trastuzumab) Targeted Therapy 8/7/2020 Perjeta (pertuzumab) Chemotherapy 8/7/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/20/2020 Lumpectomy; Lumpectomy (Left); Lymph node removal; Reconstruction (Left); Reconstruction (Right) Radiation Therapy 1/31/2021 Whole breast: Breast, Lymph nodes
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Nov 26, 2021 10:03AM exbrnxgrl wrote:

Melbo,

I know this is a tough time for you. If it’s any comfort, I have been tested for all currently known genes that might pre-dispose one to bc and I’m of Ashkenazi descent. My paternal grandmother died from bc. Thus far, nothing genetically related. Go figure!

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Nov 26, 2021 11:24PM BCinfoseeker wrote:

Hi Melbo; I’m sorry about your grandma and mom. It’s just terrible 😣

I too have no indication from genetic testing that I’d have cancer. Maternal grandmother had cancer in her 70s and had a BMX where they ripped everything out. She died of CHF 15 years later. My mom was diagnosed with advanced ovarian cancer at 87 and died 8 weeks later. I figured I’d have more time lol.

In my opinion, having results come up negative just means that you’re not positive for the few known markers. Its a crapshoot

Dx at 61. Three masses detected right breast; Bi-Rads 5. Initial biopsy false negative. Lumpectomy pathology: Multi-focal IDC. Surgery 8/27/2021 Lumpectomy: Right Dx 9/2/2021, DCIS/IDC: Cribriform, Right, 1cm, Stage IA, Grade 1, ER+/PR+, HER2-, Hormonal Therapy 10/13/2021 Arimidex (anastrozole) Dx 11/17/2021, IDC, Right, <1cm, Stage IA, Grade 1, 0/1 nodes Surgery 11/17/2021 Mastectomy: Right
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Nov 27, 2021 03:44AM rah2464 wrote:

Melbo so sorry to hear about your Grandmother's diagnosis. My elderly MIL was diagnosed with a recurrence of breast cancer after she had been diagnosed with dementia. We were able to do a lumpectomy but did no further treatment as she would not have been able to process anything. You just do the best you can, and keep them as comfortable as possible with the minimum of stress.

All of my sisters and I (blended family) on my mother's side have now had breast cancer. I was tested for over 80 genes and not one hit. I agree with one of the other posters, we just don't know which additional genes are risk factors yet.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 6/26/2018 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 27, 2021 07:41AM jons_girl wrote:

Melbo:

Sorry your going through this too. My maternal grandmother had b cancer in her 60s one mastectomy and it came back 7-8 yrs later Mets and she passed 6-8 mo later. She wasn’t tested I don’t think for breast cancer genes.

My maternal aunt and I both were dx with breast cancer within weeks from each other. Both of us were tested for the genes. I had none really she had the chek gene I believe. But nothing really has popped up in our family as a ‘ah ha, that’s why we got this!’ answer.

My mom has had biopsies. She’s got lumpy breasts. But no cancer.

It’s all crazy.

My breast surgeon told me about cancer drs…there are things we are unlearning, things we are learning, and a lot we still don’t know yet….

and that’s all very true!

So sorry what your family is going/has gone through

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/5/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal

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