I don't have BRCA1/2 deforimities...help?

jensmart

Is there someone in the same situation as I, because I still can't wrap my brain around this?  I am 36 years old.  Currently, I have breast cancer, stage 2 (cells found in sentinel lymph biopsy), her2+ and er/pr +.  I begin (neoadjuvant) chemotherapy on Wednesday.  I am 36 years old.  No history of cancer in my immediate family.  

I've had a strange journey this last year, and am looking for someone in my situation, because... I JUST DON'T GET IT.

On August 27th, 2013  I held my lifeless son in my arms, born still at 36 weeks.  I am then only 35 years old, and have a 12 year old daughter.  I have a history of miscarriages, but no known cause of any of them, my daughter, was purely a gift from God.  My son's death - no known cause.  Even after all of the tests/autopsy's.  It just happened.  Nothing is worse then hearing "I'm so sorry, there's no heartbeat."

On October 20th, 2014, I went to my doctor with the strangest of complaints.  I am gaining weight, but I'm not eating and some pretty shit back pain.  I'm not going to the bathroom, at all, and my stomach is protuding to that of a 6 months pregnant woman.  I can't be pregnant, though we've been trying for our angel baby, its not possible, not on my calculations.  I'm  sure my depression from my stillbirth has caught up.  After a few tests, I meet with the gyno-oncologist.  Surgery the 27th, 2014 finds a 22cm ovarian tumor - stage 1 ovarian cancer.  I lost my left ovary and my appendix (for fear of spreading) - doc saves my right ovary in hopes of giving me my chance of an angel baby.  No chemotherapy, just testing (ultrasound and ca125 blood draws) for the rest of my life.

November 24th, 2014, I am at home recovering.  I can't wait to resume work (though I work from home).  I have an itch, and find a 2cm tumor on my left breast.  Invasive Ductal Carcinoma ...   stage 2 initially.. what a shit phone call that was!  They should find a better way to break the news..  I am now here today, awaiting my decision to start neoadjuvant chemotherapy this Wednesday the 7th after meeting with every one of my doctors.  I have had genetics counseling, based on my history, I know the test included 50+ genes, I got a special sort of test I guess...  .. I got the call from them, I am normal - how funny it was to hear that.. I am normal..  funnier when she first said "I have good news for you."...  lol!   - my oncologist was sure my BRCA1/2 would be defective... so wrong was he!  .  My er/pr was + as was her2.  My sentinel lymph node biopsy (along with port placement) on the 30th showed cancerous cells in my lymphs.

I start chemo the 7th.  I have a 13 year old.  I wrote a letter to my son I lost in 2013, I told him I was so sorry I couldn't be with him, I had to stick around and take care of his sister.  I am so scared, that won't last for much longer.  I just need to make it to her graduation... she will be so much stronger then. 

Please.... is there anyone out there in the same situation as I?  Stage 2 is supposed to be nothing I thought.. but everytime I turn around, I find "no reason" and it scares me, my treatment will have "no reason"..  I'm so confused.  I feel it in my best interest to proceed with a double mx after chemo, based on my ovarian history.. but genetics counseling with no known defective brca1/2 really has me confused.  I'd like to find someone in my position?  Is there anyone with this same scenario?

 

thanks

Jen

 

 

Moderators

Jen-

First off, we want to welcome you to our community here at BCO. We're sorry for what brings you here, but we're so glad you've found us.

We're sure you'll get some support and advice from many of our members who can relate to one or more parts of your story, but in the meantime, you might want to check out a couple of our other forums to find members to connect with who've been where you are, or can offer some insight. Our Stage II forums and our IDC forum are full of information that you might find useful.

You'll also find, once you get to know some of our other members, that many of them don't carry the BRCA mutations either. Wanting to find the "why" is common, but we always suggest that instead of focusing on what is done and can't be changed, you focus your positive energy on what's to come.

Thank you again for joining our community, we hope you find the support and encouragement you're looking for as you begin your treatment! We'll be thinking of you!

The Mods