Why did you decide to do Genetic Testing? Postives? Negatives?

Leslie2016

Haven't gotten my results yet, but I have a new question.

Let's say I'm positive for one or both and decide to do the bilateral mastecomy. I'm already getting chemo now...so when would they do the mastectomy? Would I stop chemo? Wait until chemo is done? I'm suppose to do herceptin after chemo for a year...so hold off on the herceptin until after? During? I know I need to talk to my dr, but my MO is on vacation this week, and this week was my appt to see her before my chemo so I probably won't get the chance to talk to her again for 3 weeks. It's just been playing on my brain, so was curious if anyone else got results and made a decision while already in treatment, and what they decided.

Leslie2016

So...my gene testing just came back. It's negative. Which I know is good. But everyone, all my doctors, were so sure I was positive, now I don't know what to do with the info. Left a message for mom to tell her. I hope it will make her feel better that she didn't "give" this to me. I've told my daughter so she knows she isn't "doomed" as she puts it. I'll call my sister after I get my mom.

I'm still processing...I've been planning everything as if I was positive, so now I'm unsure where this leaves me.

Fiddler

Hi Leslie,

Congrats! Great news for your daughter. I just found out my results today too and I am negative! So happy as my husband and I have been dealing with so much other shit than the BC that we really couldn't take one more piece of bad news.

The doctor is going to send my blood for additional testing for the PALB2 gene, although she says I only have a 1-2% chance of having this.

It has been a rough ride for me. Over the weekend I suffered a life-threatening reaction to the Taxotere--"Chemo-induced pneumonitis." Huge inflammation of the lungs--I couldn't breathe. It was awful. They managed to stabilize me but I get to cancel my last chemo session which is such an incredible relief.

I am hoping things look up for me from here on out.

Lovinggrouches

I'm the sixth in three generations, yet the youngest to get breast cancer at 41. I tested positive for VUS of PALB2 gene. I'm glad I got the testing so maybe more in my family will also get tested

Leslie2016

Congrats to you too Fiddler! I'm still processing... I'm thrilled for my daughter, but I'm a little upset with others at the moment and how they took the news.

I'm sorry you have had such a rough road, but glad they were able to help you. That's scary!

Lovinggrouches, I'm glad you found some answers, so maybe you can figure out what to do next for you and your family.

Lovinggrouches

Thanks Leslie. My mom let a lot of the family know about my results and no one so far is interested in being tested.

Rebekah77

Thank you ladies for sharing! This can be so scary and overwheliming. I am waiting for an appointment for Genetic tesing for BRCA 1. My sister was DX with OV cancer this past july. She is 40. She tested positive for the BRCA 1Gene Mutation. So now my parents and I are going to be tested. I'm not sure if my brothers will chose to be teated or not. I have already had my first Mammogam, then another close up of my left breast and an ultrasound. I'm told i have very cystic breasts and they are dense. So screening every 6 months. I have though a lot about my options. I'm 39 and have 4 kids ranging from 13 to 20. If I test positive for the mutation i will be going in to have my ovaties and tubes removed as well as a double mastectomy. The only comfort in this is knowing i can take control of my future before cancer has a say in it. My main concern is for my children, my daughter is 13, the boys are older. I can only hope my results will be negative and save them this stress.

It is stories like yours that gives us hope and the courage to fight! So thank you so much!!