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joyjiang View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote joyjiang Quote  Post ReplyReply Direct Link To This Post Posted: Feb 24 2022 at 2:01pm
How old was your daughter when diagnosed? What has she been doing to prevent recurrence? 

My 31-yr old daughter just diagnosed with Stage 2 TNBC. I am heart-broken. 
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 24 2022 at 2:41pm
Dear joyjiang,

As a parent whose daughter was diagnosed with TNBC when she was 36 I understand your "broken heart." Mine was broken, too, but hopefully yours can heal too, as mine has, as my daughter is approaching 18 years of being NED (No Evidence of Diesease), in my opinion, the nicest acronym in the English language.

I am not a medical professional but I think your daughter, if she hasn't already, should consider seeing a Certified Genetic Counselor, and get tested to see if she has a gene mutation that caused her to have a pre-disposition to getting breast cancer at such a young age. Even if there is no history of breast or ovarian cancer on the maternal side of your family she may have inherited a gene mutation from her dad and dad may never 
have had cancer but passed the mutation on to your daughter.

That is what happened with my daughter. I inherited the BRCA gene mutation from my mother and she from her mother. And, even though I have not had cancer, I passed the mutation to my daughter.

It can be very important for your daughter to know if she has a mutation that is deleterious. It may affect her treatment/surgery plan.

If you have any questions you can send me a PM or and email to
info@sagepatientadvocates.org and we can talk. I am not a medical professional and will not give you medical advice but I will try my best to be a good resource for you and your daughter and there are no charges.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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joyjiang View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote joyjiang Quote  Post ReplyReply Direct Link To This Post Posted: Feb 24 2022 at 3:13pm
Hi Steve,

I had BC back in 2006, it was called double negative. Tests showed no BRCA mutation. I had 4 rounds of TAC, then chemno triggered a bad Heptitis B, almost died from liver failure. Thank God I survived. Had 20+ radiation. 

All clear. I regained my health and everything. Until April of 2021. I was diagnosed with ovarian cancer. REdid genetic testing. BRCA 1 came back positive. 

I had my daughter tested in september of 2021. She has BRCA 1 mutation as well. She has been working 70 80 hours week for 4 + years. Then last week, she was dignosed with Stage 2 TNBC. 

This hit me so much harder than my own cancer. I didn't cry much at all through both of my encounters with cancer. But I have been crying every day this week...

I pray to God and know she will be fine. But I just couldn't help crying. ..
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SuzyQ92 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 24 2022 at 10:31pm
Hi Joy. Iím Suzy and Iím 29 years old. I got diagnosed with tnbc at 27 because of the BRCA gene as well and so far so good. If your daughter ever needs anyone to talk to whose in a similar position you can always reach out to me! :) 
28 yrs old,BRCA positive, 1.7cm tumor, stage 1A, no known lymph node involvement.(dx 06/30/20)
4AC 12Taxol 3Carbo (07/16/20) BMX with Expanders (02/10/21) PCR/NED (02/24/21)
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 25 2022 at 1:59am
Dear Joy,

Sorry, I don't think I answered your question about my daughters age. She was 36 when she was diagnosed with TNBC and will be 54 in May. And she is NED and healthy.

The part that, somehow, is not talked about as much as breast cancer and BRCA carriers is the risk of ovarian cancer if you have the BRCA mutation. BRCA is short for breast cancer and indeed, we were told that, my daughter has a mutation that conferred an 85% risk that she would have breast cancer in her life time and a separate almost 50% risk to contract ovarian cancer. I think the better acronym would be HBOC Hereditary Breast and Ovarian Cancer because ovarian cancer is so hard to detect in an early Stage. I believe 80% of women are Stage III or IV at the time of original diagnosis. 

Incredibly, I have been at consults where the oncologist didn't even mention the risk of ovarian cancer but just spoke about the BRCA+ patient's breast cancer even though the woman was over 65 and clearly finished with having children. And I understand that there are risks and potential problems with gynecologic surgeries but I feel a balanced conversation is better than no conversation. 

Suzy, I deeply admire your offering to Joy to have her daughter speak with you. I think that is what I love the most about this forum. So many are so kind and caring and willing to share their experiences.  

warmly,

Steve




Edited by SagePatientAdvocates - Feb 25 2022 at 2:02am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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joyjiang View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote joyjiang Quote  Post ReplyReply Direct Link To This Post Posted: Feb 28 2022 at 3:42pm
Thank you! God bless!
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