When I Found Out
I was 37. I found a lump in the shower.
At that point, I didn't know much about family history. I was diagnosed with triple-negative breast cancer. I was already in chemo when someone from my dad's side of the family called and said, "We have a prevalent history of BRCA gene mutations."
And I remember thinking — how did I not know this?
We mapped out my family history. It traced back to my dad's side. A lot of prostate and breast cancers. Heavy history. I took the test. I already knew what it would mean if it came back positive.
It's wild how one tiny gene mutation can flip your whole life upside down.
How I Thought About Risk
For me, it came down to this: I did not want to live in fear of regret. If there were something I could remove to lower my risk, I wanted it gone. I trusted my doctors. I followed whatever they recommended to reduce my risk.
The Decisions I Faced
Originally, the plan was chemo → lumpectomy → radiation. Then I found out I was BRCA positive.
So after chemo, instead of a lumpectomy, my breast surgeon recommended a bilateral mastectomy with reconstruction. She told me that at some point in my life I would've been diagnosed with breast cancer; it just so happened it presented at the age of 37.
My oncologist recommended removing my ovaries by 40 to reduce ovarian cancer risk. I had frozen my eggs before chemo. I decided, let's just do it now. One more thing I don't have to worry about. So I had my ovaries removed. I never looked back.
But what I didn't know — and I'm still learning — is how many other risks are associated with BRCA. Melanoma. Pancreatic cancer. Colon screening. It doesn't end with the big surgeries.
No one really lays it all out for you in one place.
What Treatment & Recovery Were Really Like
Chemo was chemo. You ring the bell, but it doesn't feel like the end.
Surgery is physical, yes. But it's also emotional. You're grieving parts of your body while trying to be grateful you caught it early.
Recovery is layered. There's the physical recovery. Then there's the mental recovery. Then there's the realization that BRCA is lifelong.
It doesn't go away when treatment ends.
Where I Am Now
Now I run a nonprofit. My focus is awareness - providing access for women to get breast screenings (early detection is key!) and genetic testing/counseling.
Because many women don't know their family history. They don't know their risk. If you find out early, you have options. Preventative options.
Most of the BRCA women I meet have already completed their surgeries. They're "on the other side."
But I still don't see a single place that walks you through what happens after you test positive.
It's still scattered.
What I Wish I'd Had
A directory. A clear A-to-Z guide.
If you test positive for BRCA1 or BRCA2, here are:
- The associated risks
- The doctors you need to see
- The order to see them
- The cadence of appointments
How often do I see my oncologist? How often do I need scans? What screenings matter? Not just information — organization. A hub.
What I Want You to Know
You are not alone.
When you get those results, it feels massive. It feels like everything changes overnight.
But you can take action.
And if someone could put the roadmap in your hands early — that would change everything.
Not fear. Not panic. Just clarity. That's what I wish I'd had.
This is one member’s personal experience, not medical advice. Talk with your care team about your own situation.
