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Topic: Family history...

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

Posted on: Mar 8, 2019 03:28PM - edited Mar 8, 2019 03:28PM by Lilmee1234

Lilmee1234 wrote:

My mother was just diagnosed with TNBC, my maternal aunt, grandmother, her sisters, and my great-grandmother and greatgrandfather all had breast or ovarian cancer.

I'm somewhat terrified about my own genetics/risk/history. I'm only 32 but had a fiberabnoma removed when I was 20, a MRSA abscess while breastfeeding, and a cyst all in my right side. Doctors have said these are all unrelated, but I feel like it's more like foreshadowing that my breasts (or at least rightie) are trouble makers.

Where do I start with early screenings and testing? My gyno? My mother's gene testing isn't back yet.

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Mar 8, 2019 04:28PM illimae wrote:

I wound say start getting mammograms now. My mother and material aunt both had BC (mom stage 1, aunt stage 4), so I got a mammo early at 39, which was clear. Just over a year 1/2 later, I felt a lump, saw my PCP, had all the tests and was diagnosed stage 4 in less than 2 weeks. My intention is not to frighten but to state that family history is important. Also, neither my mother nor I had any generic cause found but the geneticist believed the cause might still be unknown and recommended that all my female blood relatives begin screening at 31.

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) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) 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, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 8, 2019 04:42PM Lilmee1234 wrote:

Oh wow! How old were your mom and aunt at diagnosis? My old doctor dismissed my concerns because my closet relatives were over 50 at diagnosis.

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Mar 9, 2019 01:18AM - edited Mar 9, 2019 01:25AM by blah333

funny, because I dismissed my family history because my grandma was in her 70s, but then my mom got it at age 50, but I ate such a better diet than her, I though it wouldn't happen or certainly not until later... but then at 35, there I was. Doctors were less dismissive than me of this family history, especially when I mentioned my mom getting it.

Although it's strange, I have a younger sister who is 32 who waited 1.5 years after my diagnosis to just be looked at/get a mammogram and the doctors tried to tell her insurance might not cover it because we were BRCA negative (and have no genetic deviances? on my report, though clearly this is hereditary). Grandmother, mother, sister... that's a direct line down to her and next to. her, genetically. She should be monitoring things and not get flack from insurance companies for that. Luckily she had a clear mammogram but I have a hunch she will probably have to go through this too. She does not take it very seriously and blows it off like not getting an oil change in the car, so I have a great fear she will end up with a late stage version if it happens. I'm not sure how to get her to care more...

My pathology report showed I had fibroedema in my healthy (prophylactic breast).... I do think my breasts must have been a "fertile soil" so to speak.

See what the genetic test results are.... monitor and start getting mammograms now, but don't think you MUST have preventative surgery ASAP. You have time to think things through and take it step by step. Enjoy your breasts while you can... if many years pass and you are tired of the stress, then you can have a prophylactic mastectomy. My aunt (mom's sister) did this in her early 60s due to being tired of biopsies and stress. It feels kind of unfair that they made it to their 60s fine and and I had to have this happen in my 30s. Anwyay - shit can still happen if you are negative for all the genes they test for now.

Age 35 at diagnosis Dx 9/2017, DCIS, Left, 6cm+, Stage 0, 0/2 nodes, ER+/PR+ Surgery 12/1/2017 Mastectomy: Left, Right
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Mar 9, 2019 04:06AM - edited Mar 9, 2019 04:08AM by farmerlucy

My genetic counselor did a full family review when he was calculating my lifetime risk. This was only after atypical hyperplasia was found via excisional biopsy. I got extra “points" for the male BC in my family and the very early familial onset. I would suspect any history of ovarian cancer in the family would be extra “points". However, in every generation there is only a 50% chance you'd inherit any wonky genes (unless both sides have them). Do your due diligence, but don't panic. My DIL has a known braca mutation in the family which caused her a great deal of angst until she tested negative for said mutation. Also has a self pay 30(?) gene test for $250that is pretty good, AND you get to visit with a genetic counselor by phone after you get your results.

PS I personally would not be troubled by any of the benign findings in your breast tissue at this point.

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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Mar 23, 2019 06:21PM Lilmee1234 wrote:

Thanks everyone for your insight. I’ll make an appointment to see my obgyn and then go from there to start getting early mammograms and screenings.

My mom's insurance which is the same as mine denied her BRACA test even though she has cancer and family history, but she still did it so I should know her results soon. Since I have the same insurance (my dad and husband work for the same company) I may choose to do the test for myself instead so I’m not stuck with a $4000 bill.

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Mar 23, 2019 06:42PM AliceBastable wrote:

If there's a breast center where you have your mammogram, ask if there's a genetic counselor. They can arrange for genetic testing based on family health history.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/28/2018 Whole-breast: Breast, Lymph nodes
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Mar 23, 2019 07:48PM Lilmee1234 wrote:


I’m concerned insurance won’t pay for genetic testing. My mom has family history and recent diagnosis of breast cancer and they’re not paying for it... ridiculous. We have the same insurance so I’m guessing it would be similar for me especially since I don’t have a dx. Oh well, her pricey test results will be coming in soon and I may have a clearer picture at that time.

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