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Old 03-01-2021, 04:11 PM   #1
Tracildouglas
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Join Date: Mar 2021
Location: I live on Long Island in NY.
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Genetic Testing

Hi Support Group,

I was wondering if anyone has been tested for gene mutations other than BRCA? I wonder if there are any gene mutations associated with triple positive or HER2+ in the way BRCA is associated with triple negative? I am also interested in knowing if anyone else has a family history of breast cancer with the same subtype of breast cancer. My mom and I were both triple positive. She was diagnosed at 62 and I was diagnosed at 41.
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Old 03-03-2021, 01:43 PM   #2
jaykay
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Re: Genetic Testing

Hi - I had genetic testing after my first diagnosis and was BRCA negative. Fast forward to 2018 and a suggestion that I get re-tested since the there were more mutations tested for than BRCA in the the "new" standard test.

I was positive for chek2, which helped to explain my recurrence 12 years later and also gave me something else to worry about ;-).

I can't speak to triple positive since I'm ER+, Her2+. My mother had DCIS way back and had no genetic testing.

Janis
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 03-03-2021, 02:16 PM   #3
Tracildouglas
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Location: I live on Long Island in NY.
Posts: 6
Re: Genetic Testing

Thanks so much for your reply JayKay! So happy to hear that your recurrence was caught early and you were treated effectively! My min had a lumpectomy. I had a double mastectomy and was actually scheduled for a prophylactic surgery when they found the breast cancer (6mm in my right breast). I did Taxol and Herceptin. Have been on Tamoxifen since 2013. I did genetic testing in 2013 and again in 2018 too. Same panel. Not positive fir Chek2 but a variant of uncertain significance was found. I have a 9 year old daughter. I plan to get super early surveillance and monitoring for her whether or not a genetic mutation is ever found/exists!
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Old 03-10-2021, 06:56 PM   #4
Becky
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Re: Genetic Testing

I am over 16 years out but got genetic testing early on. I was brca 1&2 negative. However, the years passed and they found more genes that were linked to breast and ovarian cancer. They are not linked as strongly as the brca genes. So, I got retested for 21 genes and I have a variant of unknown relevance on RAD 51D. So, they don't think it causes cancer but in time, they might find that it does. When I investigated this, known variants are strong for ovarian rather than breast. Oddly, my paternal grandmother died from ovarian cancer. I had my ovaries removed many years ago. My mother and sister both had bc as well and I made them get this full testing. They were negative all around and did not have this variant. So, maybe in 10 years I get a call this variant is something but I was told it isn't a significant gene as well. We'll see
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 16 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 03-10-2021, 07:57 PM   #5
Tracildouglas
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Location: I live on Long Island in NY.
Posts: 6
Re: Genetic Testing

Hi Becky! Thanks for your reply. Was your mom or your sister also HER2+? Were they also diagnosed under age 50? Did doctors ever share with you, your mom and your sister what might have caused all 3 of you to be diagnosed in the absence of a gene mutation? So many questions! So happy to know that you are your family fought and beat this disease and are doing well!
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Old 03-11-2021, 01:30 PM   #6
Becky
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Re: Genetic Testing

I was 45 at diagnosis. My mom was 71 and actually diagnosed 5 months AFTER me. My sister was 47 and had dcis. Her dcis was highly hormone positive. They don't run her2 on dcis because it almost always is. My moms was only highly hormone positive. Mom recently passed away from something else at almost 89 years old but my sister and I are thriving.

I think something happened to cause it. Genetics and the environment- exposure to something. Who knows? Everyday we get alittle closer to a cure.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 16 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 03-11-2021, 03:21 PM   #7
Tracildouglas
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Location: I live on Long Island in NY.
Posts: 6
Re: Genetic Testing

Becky, thanks again for sharing! I was diagnosed 5 years after my mom but she was 62 and I was only 41. My best friend from across the street was diagnosed at 42 and she was also HER2+. An oncologist once told me that she thinks it is the pesticides that were used on the potato farms on Long Island that have led to the high rates of breast cancer in Nassau and Suffolk. My mom was also a heavy smoker and smoked indoors. I sometimes think that the second hand smoke affected me too. There is also the likely genetic connection like you mentioned. And yes, a cure can’t come fast enough!
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Old 03-11-2021, 03:37 PM   #8
Tracildouglas
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Location: I live on Long Island in NY.
Posts: 6
Re: Genetic Testing

Becky, I did have one other question for you! Do you or your sister have children? Have you received any guidance on how early they should be monitored for breast cancer? My daughter is only 9 but I can’t help but think about ways to minimize and eliminate her risk already!
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Old 03-12-2021, 09:31 AM   #9
Becky
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Re: Genetic Testing

We do have children and ironically all daughters. Standard is to start monitoring 10 years before mother's diagnosis. I was 45. My daughter who is almost 35 just got done. Like I was, she has very dense breasts so she got an ultrasound. In a few months she is getting an mri. Their plan for her going forward is mammogram and then in 6 months mri and so on.

My niece ( sister's daughter), also just got done. Same thing as my daughter. Only niece freaked out. My daughter is more pragmatic. Her thinking is if anything shows up, it will be early and curable. Niece doesn't think she can handle it if anything shows up. Well, nobody wants anything to show up, right?

Other 4 girls are 26-31 years old and are waiting alittle bit.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 16 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 03-12-2021, 09:43 AM   #10
Tracildouglas
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Join Date: Mar 2021
Location: I live on Long Island in NY.
Posts: 6
Re: Genetic Testing

Yes, everything you shared makes sense. My daughter will start high risk monitoring closer to 30, maybe earlier! God Bless you and your family and thanks again for responding to all my messages!
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