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'The stigma needs to stop': Mom who never smoked fights lung cancer

The first question that gets asked is, "Did you smoke?" says Erica Castaneda, a young mom of eight children who has terminal lung cancer.
/ Source: TODAY

Erica Castaneda of Reno, Nevada, was diagnosed with stage 4 lung cancer in February 2016. The 38-year-old mom and stepmom of eight children, ranging in age from 21 to 4, says her terminal illness has been made worse by people who incorrectly assume she smoked. She shared her story with TODAY.

Erica Castaneda has been diagnosed with terminal lung cancer.
The Castaneda family, top row from left to right: Dylan, 16; Destiney, 19; Deric, 13; Erica and her husband Serjio; Danielle, 18; David, 21. Bottom row: 4-year-old identical twins Sebastian and little Serjio. Erica Castaneda's 18-year-old stepson Aidan is not pictured.Courtesy Kaylynne Kroshus Photography

The furthest thing from my mind was cancer because I have never smoked.

In the year before my diagnosis, I got pneumonia three times. I was feeling a lot more under the weather than usual and I went to the emergency room because of a stomach ache. During a stomach scan, doctors were able to see the bottom lobes of my lungs and when the emergency room doctor came back into the room, she said: “Your stomach scan looks great. Can everyone leave the room?” and I knew immediately something was wrong.

“You have tumors in your lungs.”

Everything happened exceptionally quickly after that. Fast forward a couple of days and I’m already seeing an oncologist. The cancer wasn’t just in my lung; I had hundreds of tumors all over my bones — on my sacrum, spine, hips, knees, femur bones, shins, wrists. I even had two small tumors in my brain.

They only gave me two months to live in the very beginning. I was heartbroken. I was angry. I was sad for my kids.

My cancer turned out to be genetic — we learned through genome testing and tumor testing that the cancer had come from my father’s side of the family.

Erica Castaneda has been diagnosed with terminal lung cancer.
Erica Castaneda was diagnosed with lung cancer even though she never smoked.Courtesy Erica Castaneda

Did you smoke?

It’s disheartening that the automatic assumption from somebody who just meets you is “Oh, she must have smoked, it’s her fault.” In my case, that’s not it at all. The first question that gets asked is, “Did you smoke?” I just think it’s a terrible way to start a conversation about somebody getting a terminal illness.

It’s sort of offensive. That is the stigma part that just needs to stop because it’s not just with lung cancer. There are other factors that contribute to cancer.

I’ve had copious amounts of chemo. I’ve gone through 90 days of radiation on various parts of my body. After that, we had to fight the insurance company for immunotherapy. I was able to get one dose, but it caused my thyroid to fail and affected my heart. So immunotherapy was off the table.

Then, we fought for another nine weeks to try to get a trial drug. The problem is my insurance does not allow anyone over the age of 21 to participate in trials. They just don’t think that it’s medically necessary to have that research. When it comes to insurance, the measures I’ve had to take as someone fighting a terminal illness has been disheartening to say the least.

We tried to get another trial drug. By perseverance, luck, determination, we were able to contact the drug manufacturer directly and they allowed us to be a part of a trial. We couldn’t be more grateful. If they had not said yes, I would not be here right now. The hope for me is that it stops the cancer where it’s at and either shrinks the tumors or blocks the correct inhibitor and that I will have a little bit of time.

Erica Castaneda has been diagnosed with terminal lung cancer.
Castaneda with her youngest kids, 4-year-old identical twins Serjio and Sebastian.Courtesy Erica Castaneda

Find the good

Unfortunately, this cancer for me is terminal. The end of this disease for me is death and that’s very difficult to swallow, but if there’s something I can do in the process to continue to live my life and be able to spend more time with my kids and my husband, that’s a huge benefit.

What I would say to people in my situation is find the good, search for it, surround yourself with people who love you. Don’t feel like a burden, allow people to come visit you and cook for you and do things for you. Stay positive. Live this life, love this life. Don’t give up. Be better, not bitter.

We all have a time. Making it past this year is probably not going to happen for me. But I’m here until I’m not here. I’ll keep fighting till the end of this.

The family has set up a fundraising page to help with medical expenses.