Diagnosed at 30with TNBC

Jillg284

hi everyone! My name is Jill! I'm new to all this here and I want to share my story! 

I was diagnosed in February right after my 30th birthday with stage 1 IDC TNBC. 1.5cm tumor in right breast with no lymph node involvement. I am BRCA  1 pos as well. I randomly found a lump while taking off my bra in and new right away something wasn't right. I had large dense breasts..36dd to be exact and never felt any lump or bump ever! I'm an ER RN in NYC and I went to the ER where I worked to have them do an US and find nothing wrong with the tumor.  They told me it was a fibroadenoma. I still didn't believe them so I made an appt with my GYN. A week later I was sent right over to a breast surgeon and had a biopsy and was diagnosed. How could this be? I'm only 30! Heathy, active, not a smoker. Not risk factors..until I tested positive for BRCA. That was my answer. I opted for a double mastectomy off the bat. At this point my DDs had no say in anything. I wanted them off ASAP. So 3 days after my bridal shower (yes i was also getting married in the mix of this) I had the surgery with tissue expanders. 2 weeks post op I developed an infection in the left breast on the incision line. Spent 6 days at Sloan Kettering on antibiotics and had surgery to remove the necrotic tissue that formed. After that, the day after Easter in April, I was back at Sloan  for a reaccuring infection in the left breast. My plastic surgeon decided then to take out the tissue expander. 3 surgeries later, I am without a left breast   The one that was not cancerous! I have to wait 6 months to get a new tissue expander in. I had a bacteria called serratia that formed on the tissue expander! After that recovery went by and my wedding was around the corner.  I started CMF chemo on May 19, 11 days before my wedding. Thank god the doctors say I'm such a low risk I don't need aggressive chemo, just preventative. I'm on my 3rd tx starting today and go thru November. My wedding was beautiful, no honeymoon yet but looking forward to it next year!  That's my story in a nut shell. 

I don't know much about TNBC because after reading one article before surgery I had a panic attack so I refuse to read more into it. I am nervous that it will come back. My mind goes crazy sometimes thinking about is this how I'm going to die? Young, sick and from breast cancer? I don't know anyone my age with the disease and can't get other opinions or stories to help me get thru this. I am very positive about this whole process and always have a smile but I'm a nurse, I know a lot. And honestly I am scared! I would love to hear other opinions, stories if any TNBC survivors that will give me hope! 

Thank you and look forward to chatting! ;-)

Moderators

Hello Jill, and welcome to the Breastcancer.org community. We're sorry you have to be here but glad you've found us. Here you will find a supportive community open to sharing their experiences and hearing about yours. You may also want to check out our Young With Breast Cancer Forum, where you can connect with other young women.

(((Hugs)))

The Mods

belleb

Hi Jill! What a crazy few months you've had and a wedding in the middle of it all! Glad to hear that the wedding went well. I'm a little older than you (36 - 35 when diagnosed), so still considered young in the BC game. This forum has lots of great links if you have time to sit down and pore through them. TNBC can be a sneaky one, but there are lots of long term survivor examples and great women here to share their stories!

lintrollerderby

Hi, Jill. I'm sorry you're here, but glad you found us. I was 34 when diagnosed with TNBC and I was also originally told it was a fibroadenoma. Like you, I learned that I have a BRCA1 mutation which was to blame for being in the unique position of having such an aggressive breast cancer at such a young age. Not to add to your plate, but since you're a BRCA1 mutation carrier, have you spoken to a gynecologic oncologist? Our risk of ovarian cancer is quite significant. 

Best wishes.

Jillg284

I will defintly look into the other forums! Yea it was a crazy couple of months given I was in the hospital a lot due to the infections. But thank god everything came together and my wedding was beautiful.  I never heard of TN before and after reading about it from the medical books at the hospital, it really scared me. But I kind of had some hope after my nodes came back clear. Since TN such a tricky cancer that's where I get all nervous. It's weird how my life completely changed. I still can't believe this all happened to me, but then I read everyone else's stories and it gives me hope for myself. 

I did not see a gynecological oncologist yet but I do know my risks. I had fertility done and saved 21 embryos in case I am unable to have children after chemo. I am closely monitored by my regular GYN since the BRCA and having a cyst on my left ovary. But during fertility they said it was completely normal and comes and goes with my cycle. I plan to have kids as soon I am cleared too. Have two back to back and start the process of removing ovaries. I will NOT go thru something like this again.  Thank you though for the info ;-)