When you talk with Vincent Smith, it’s not immediately evident just how much pain he has endured as the father and husband of three women who have battled breast cancer. But those experiences have clearly informed his role as a source of support and advocacy—not just for his own family, but for others touched by the disease.
Smith, of Liverpool, was a young father when his wife Judy was diagnosed with breast cancer in 1985. He admits that he didn’t always know how best to help his wife through the process of treatment and recovery. And, at the time, there were very few places for family members to turn and get support for themselves.
“People just were not talking about breast cancer like they do now,” Smith, 66, says. “It was a difficult place for a young man to be.”
And it was a place he would find himself in again 20 years later. His daughter, Dawn Steber, was diagnosed with the disease in 2005. At first, her battle seemed successful. She was in remission for the better part of a year. But Steber’s cancer returned, with a vengeance. Her doctors gave the Smiths a grim prognosis: Dawn was Stage 4, and the cancer had formed in her sternum and liver.
“We were blindsided,” Smith recalls, explaining that his youngest daughter, a vibrant wife and mother, had already endured a bilateral mastectomy and had been told her cancer was not in her lymph nodes. “We thought we were past the worst of it.”
Smith remembers that Steber’s oncologist, Dr. Sheila Lemke, was as stunned by the finding as he was. And she didn’t sugar-coat the prognosis. “She gave us the hard answers to our questions,” Smith recalls. “And she said, ‘You just need to be strong for Dawn. You have to be the rock.’”
Dawn ultimately lost her battle on May 30, 2011. For Smith’s wife, Steber’s death—months shy of her 38th birthday— “brought a whole other sort of pain.” For her, the sorrow of losing a child was compounded with a sort of survivor’s guilt. Additionally, just months before Steber’s death, the Smiths’ daughter DeDe Milewitz was also diagnosed.
The diagnoses would be difficult for any family to endure, but Smith says he, his wife and those closest to Steber have found strength in continuing the work Steber started. Throughout her treatments, Steber remained committed to fundraising and breast cancer awareness. She formed The Rise of Dawn in 2006 for the Making Strides Against Breast Cancer Walk, and the team remains active today. The money raised has gone to Upstate Hospital and the Carol M. Baldwin Breast Cancer Research Fund of CNY. The team raised $10,600 for last year’s walk.
Smith says the staff and support services offered through University Hospital’s regional Oncology Center (ROC) were a big help to his family. “The people there were so supportive, and I felt like my feelings were taken into consideration,” he says.
He admits that men are in an unusual position emotionally when they are trying to be the main support for a wife, or daughter, or sibling. Given his unfortunate wealth of experience in this regard, he is thankful that he had support for himself, too. But he adds that everyone has different needs.
“I didn’t turn to support groups or organizations,” Smith says. “We are a very close family and we support each other. We also have wonderful friends and a very strong church community. Between our family, our faith and our friends, that’s where I turned for comfort.”
The Smiths are longtime members of Pitcher Hill Community Church in North Syracuse. Smith says it’s a part of his life he cannot imagine living without. But that’s not to say he doesn’t have moments of weakness.
“There isn’t a day that goes by without thinking about how we miss Dawn and how we’re worried about DeDe.” Smith says. “I’m a religious man and I still get angry sometimes. But I was lucky because people were not afraid to talk to me about how I was feeling and offer support. Sometimes just being there means a lot.”
And that’s just what Smith is doing for his son-in-law, Tom, and grandson, Vinny, who was only 7 years old when his mom died. “We talk several times a week, but it has been difficult for them,” Smith says. “This illness doesn’t only impact the husbands, it impacts the children as well.”
To other men who find themselves in a support or caregiver role, Smith encourages resolve. “Don’t be afraid of this disease,” he says. “Go out and fight with your loved one.”
That “fight” could include anything from advocacy to simply volunteering to go to medical appointments. “After a patient gets their test results, it can be overwhelming,” Smith says. “Someone needs to be there to be present and to listen well. Go and take notes for them.”
The Smiths, along with Steber’s other survivors, are currently working with Lemke on two endowment funds that will be established in Steber’s memory at the Upstate Cancer Center. One will assist patients in covering care costs, the other will be used for physicians seeking further education on specialized aspects of treatment and research.
Lemke, director of the multidisciplinary breast cancer program at Upstate University Hospital, says she is privileged to help the Smith family in this way. “They are such a unique family—to have two daughters who have been with this disease… But they have taken an adverse event and tried to make something positive.”
Lemke says that, as a clinician, she has to walk a careful balance between the realities that her patients face on a daily basis and the possibilities that research can explore. These endowments will help address both these aspects.
“Millions of dollars have been spent on breast cancer research, but sometimes it’s a matter of dealing with the patients that are in front of us right now,” Lemke says. “The family has asked me to address those more individual needs, too. One endowment will help local patients. The other will allow doctors to travel and work with experts across the country on research or new treatments. It is important for our physicians here in Syracuse to network with other experts.”
Smith says that while there is now so much more information available to patients and caregivers than there was when Judy was diagnosed, there are still aspects of treatment that are needlessly complicated. “I would say that the Internet has helped people understand the abstracts of the disease, but there is little information on financial support,” he says. “We really struggled at times with how this was going to work out.”
Steber and her family were fortunate in that they had good health insurance, and they had access to a good team of people at University Hospital’s ROC. Smith says the financial staff helped them navigate the monetary hurdles so Steber and her family could focus on her health.
“It’s bad enough that you’re worried about your health,” Smith says. “You don’t need the added concerns of how to pay for treatment. There needs to be a better way of communicating how to deal with the cost of cancer care.”
Over the course of Steber’s illness, Smith became a tireless researcher. In October 2010, he learned about a new treatment, Erbulin, which had shown promise for extending the lives of late-stage breast cancer patients. At that time the drug had yet to be approved by the Food and Drug Administration, but the find encouraged Lemke to get Steber on the treatment as soon as it was. Erbulin was approved that November, and Steber was treated with it by the following January.
“She had a comeback,” Smith recalls gratefully. “We had Dawn for another five months.”
Smith says the ability to remain hopeful is another important factor
for men who are in a supportive role to breast cancer patients and
survivors. “You’ve got to believe in miracles,” Smith says. “If you’re
the patient, you have to be hopeful that the next new drug that comes
out could be the final cure. That’s why I’m still so passionate about
this. I’m holding onto hope for all of these people who are battling
this terrible disease.”