NEW YORK (FOX5NY.COM) - Hundreds of millions of dollars are spent on breast cancer research every year. But some say a many cancer patients aren't getting the research they need.
Dee Lakhani Shravah was diagnosed with stage IV breast cancer in 2015 and quickly found out that it was incurable. Over the past few years, she has gone on a journey she never expected. And now she is vowing to raise money for an area of research that experts say is in desperate need of funding.
Dee loves to document life's precious moments in photographs, such as special memories with her husband and 5-year-old daughter Aariyana. She is capturing as many milestones as she can because Dee doesn't know what the future holds.
Dee's cancer was diagnosed when she was just 39. She was told cancer had spread to her bones.
"I was definitely in shock," she said. "It was something that I didn't expect, being so young, 39 years old. I'm not supposed to get breast cancer."
Dee said that a lot of confusion followed her diagnosis and she had tough decisions to make.
"When I was diagnosed, I thought that the doctor was going to tell me what to do—'Here's what you have, here's what you do,' I thought it was going to be black and white," she said. "It's not. Nothing is black and white. You have to do your own research, you have to talk to people, and you have to be your own advocate."
Dr. Linda Vahdat is a breast medical oncologist at Memorial Sloan-Kettering Cancer Center and a leading expert in stage IV breast cancer.
"I think the hardest thing for any patient at any stage of their disease is navigation," she said.
Dr. Vahdat specializes in finding new therapies for women with the disease but said more funding is desperately needed. Statistics show only an estimated 2 percent to 5 percent of all funds raised for breast cancer research is spent on studies for stage IV.
"If we were to have more funding, we could more quickly accelerate our path towards curing this disease," she said. "We need more research into understanding why tumors spread, because if you can prevent tumors from spreading then you'll never have stage IV breast cancer."
Dee said she asks herself this question every day: "Why is there so much money being poured into breast cancer and there's not enough out there for us?"
She has now become an advocate for the stage IV community by dedicating her life to raising awareness and money for more options and medications. Last year, she held a fundraiser on her birthday called Metabash and raised $30,000 for an organization called METAvivor, which focuses on research for stage IV.
"What I like about METAvivor is the money goes to scientists or people in the medical profession that are actually working on research for meds," Dee said. "The issue out there is just that there's not a lot of meds to choose from."
Since her diagnosis two years ago, Dee has been through surgery, hormone therapy, and chemotherapy.
"I was on chemotherapy for six months. Half of it, I was bedridden," she said. "I lost my hair, my eyebrows like many people do... my eyelashes. But I never lost my spirit."
Recently, Dee started a blog called Deetermined.org with advice for other women and recipes with cancer-fighting foods. She is making a difference as she continues to fight.
"I've just always been a positive person so I don't have it in me to let anything upset me or let this control my life. I am going to control the cancer. The cancer is not going to control my life," Dee said. "And even at the end when it does control me, I didn't go down without a good fight. And I didn't go down without making a difference."
The American Cancer Society recommends women start annual mammograms at the age of 40. However, Dee discovered her cancer during a self-exam at 39. Experts say women younger than 40 should know how their breasts normally look and feel and report any changes to their doctor right away.
For more information about Dee and METAvivor, see these links: