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new diagnosis/genomic testing?

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Nikkiy View Drop Down

Joined: Jan 14 2021
Location: St Louis
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    Posted: Jan 15 2021 at 6:34pm
Hello all! I am 39 year old mom of 2 and recently diagnosted Stage 2B TNBC. I had some breast pain in July and my OBGYN told me it was normal to have it come and go being under 40 a mammogram was not recommended. I thought nothing of it until early December when I started having stabbing pain in my left breast. I got into my primary care doctor and a few days later the shock diagnosis of my life! I am nonBRCA, no mutations found. 

I am on the standard ddAC-T. I have finished two cycles of AC. It was true for me that after the second cycle my hair started falling out like crazy. I definitely wish I would have been proactive and just cut it off into a pixie cut because my hair burned into a knot called birds nest syndrome. My husband helped me remove it and eventually shaved my head. My kids were a little scared to see me without hair, but I think my wig will help. I stand by my decision not to use a cooling cap because I am prone to migraines and I don't want any more side effects. But I wish good luck to everyone who benefits from it. Losing your hair can be so emotional and really "let the cat out of the bag."

I have a question for those of you who are ahead of me in the treatment regimine. I keep hearing how TNBC can either respond well to chemo or not. Has anyone had genomic testing on their tumor? My medical oncologist told me that it wasn't routine and that my insurance wouldn't pay for it. I am seeking a second opinion from a different oncologist, but it just seems like it can't do any harm to know. Apparently the goal is for 50% reduction of the tumor by the end of the 4th AC. Thoughts?

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123Donna View Drop Down
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Joined: Aug 24 2009
Location: St. Louis, MO
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Points: 13494
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 16 2021 at 12:08pm
Hi Nikkiy,

I'm sorry your ob/gyn didn't listen to your concerns and order a mammogram or ultrasound.  I had dense breasts and my ob/gyn started giving me routine mammogram when I was just 27 years of age. 

Just my observation.  Genomic testing on the tumor is usually only done on recurrent or metastatic cancer.  The standard of care for chemo is what you are getting. I personally wish they would test the genome of the tumor for every new diagnosis, but we just aren't there yet.  Your onc is correct that insurance wouldn't pay for it.  It seems the insurance companies are the decision drivers too many times.  You could see if there are any grants available or payment plans if you want this type of testing.  Are you considering the Foundation One test?

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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