A survivor's story

Inflammatory Breast Cancer survivor informs while spreading hope

Bonnie Volovar is a survivor of rare Inflammatory Breast Cancer. She was treated at NIH in Bethesda.

“My family gathered on a Saturday so we could mourn,” says Bonnie Volovar, a Frederick county resident and survivor of Inflammatory Breast Cancer. “It was like being handed a death sentence.” Today, almost five years later, Volovar and her family realize she is one of the lucky ones. And now, she wants to share her story with as many people as she possible can.
What is IBC?

A rare but very aggressive form of breast cancer, IBC only accounts for one to five percent of all breast cancer cases in the United States. Unfortunately, the survival rate for these cases is extremely poor and the chances of recurrence extremely high. While most cases seem to affect younger women — the median age at time of diagnosis is 52 versus age 62 at time of breast cancer diagnosis — IBC does not discriminate against older women or men.

With IBC, the cancer cells block the lymph vessels in the skin of the breast causing inflammation, hence the name Inflammatory Breast Cancer. Symptoms may include redness, swelling and warmth in the breast, often without a distinct lump. The skin of the breast may also appear pink, reddish purple or bruised and may have ridges or appear pitted, like the skin of an orange — (called peau d’orange) — which is caused by a buildup of fluid and edema (swelling) in the breast. Other symptoms include heaviness, burning, aching, increase in breast size, tenderness or an inverted nipple. Symptoms usually develop quickly — over a period of months, or even just weeks.

One of the biggest problems IBC patients face is the misdiagnosis of their disease. A surprising number of young women with IBC actually experienced their first symptoms during pregnancy or lactation, when their breasts are normally swollen and uncomfortable. Often cases such as these are treated as mastitis, while others are diagnosed as skin irritations or even bug bites for which patients are sent home with antibiotics.

Alas, by the time IBC is detected, it has more than likely spread to other areas of the body (metastasized). As a result, the five-year survival rate for IBC patients is only between 25 and 50 percent, significantly lower than the survival rate for non-IBC patients.

And, although three-year survival from IBC has improved with the use of combined treatments from 32 percent in 1975-1979 to 42 percent in 1988-1992, women with IBC still have far worse survival rates than those with other types of breast cancer.

Furthermore, in an analysis of the trends and patterns in IBC incidence and survival using data from the National Cancer Institute’s Surveillance, Epidemiologic and End Results (SEER) Program, a doubling of IBC incidence in the United States was reported over the past 15 years.

“We have seen the possibility of a slow rising trend,” says Dr. Claude Sportés, investigator for the IBC study at the National Institutes of Health. “But, in our studies, we have seen survival rates increase with the use of bone marrow transplant and high doses of chemotherapy. In fact, with the transplant protocol, we have done remarkably well.”

Dr. Sportés points out that standard treatment — like that used in most breast cancer cases — does not work with IBC. He stresses that those diagnosed with IBC need to seek research treatment which has shown survival rates increase from 25-30 percent to 60-65 percent. “With standard treatment, most IBC patients will have a recurrence within 12 to 18 months,” says Sportés. “With research treatment, if you go five years, you know you’re good.”

A survivor’s tale

Volovar, who was treated at NIH, is thankful for her new lease on life. Her road to diagnosis started in late 2002. Volovar was like many others — an IBC case that was not readily diagnosed. In fact, after two inconclusive mammograms and ultrasounds, she was diagnosed with mastitis and sent home with antibiotics.

“In 2002 I went to my family doctor because I had a hard spot on my left breast,” remembers Volovar. “They sent me to a breast surgeon, but nothing was found. Later in 2003 my breast was swelling and looked bruised and pitted. I went back for an ultrasound and again, nothing was found. From there they had me on two different antibiotics for mastitis.”

Fortunately, Volovar knew something wasn’t right and went for a second opinion. This time she saw Frederick’s Dr. Edward Solano, who knew straight away what they were dealing with. It’s important to point out that Volovar had been undergoing hormone or estrogen replacement therapy for the past 14 years — a process that is believed to feed the cancer in IBC cases. The day Dr. Solano saw Volovar he told her to stop taking the hormones immediately and sent her for a biopsy that same day. Two days later, Volovar had her diagnosis.

At the time of her diagnosis, Volovar’s husband was working construction on a clinical center at NIH. After asking some questions, he was told they had a protocol — or experimental treatment for IBC. Together, Volovar and her husband went to hear what the program was about. “The protocol was a tough program,” she says. “But I thought about it and I realized that at 56 years old, I hadn’t made my mark yet. This would be my gift to mankind. After discussing it with my family, I decided to go for it.”

Volovar immediately began an intense program to fight the IBC. The first two months she underwent treatment consisting of chemotherapy. The second step was the surgery to take her own stem cells, which were then stored away for use further on in her treatment. The third step saw Volovar through three more courses of chemotherapy, which was administered over three-day periods.

“It was some tough stuff upfront, but this was my opportunity to live longer,” says Volovar. On Oct. 10, 2003 — after five months of upfront treatment — Volovar had her mastectomy; and after one month of recuperation, she was back for three more months of chemotherapy administered in Frederick.

But it was in February 2004 that Volovar feels she was truly given her new lease on life. “I went into complete isolation at NIH and was given high powered chemicals to destroy my immune system,” recalls Volovar. “Three or four days later they performed a stem cell transplant using my own stem cells.”

After two and a half weeks in NIH and a month off, Volovar went through her last phase of treatment — six weeks of radiation in Frederick. It took Volovar two years to recover completely. “I recovered in degrees,” she says. “I didn’t realize how physically low I was until it was over and I looked back.”

Four years later, Volovar suffers from some side effects, namely weak bones. But she feels like her old self again. “I just can’t sit still,” she says with a smile. “Now, my only problem is that there are so many people who were so good to me, I want to be sure I give back to all of them. ‘I owe’ is my philosophy.”

Today, Volovar is giving back. A fighter and victor over this deadly disease, she now speaks out as often as she can. “Once this disease gets a grip, it’s hard to fight,” she says. “I want to make people aware of the symptoms, so that women can be diagnosed and treated in the early stages.” Volovar also wants to be there to support women going through IBC.

“Having a support system is half the battle. The love and encouragement from my family and friends is what helped me. When I was first diagnosed, my girlfriend said, ‘You may not know this now, but this will be one of the blessed times of your life.’ She was right. I have a new appreciation for the small things and my husband and I are more cognizant about enjoying life.”

The future of IBC

Historically, survival statistics have been grim for women diagnosed with IBC, but there is hope. New approaches in treatment offer greater odds for survival than ever before. And while this is good news, Dr. Sportés does point to the controversy behind the transplant protocol. “Unfortunately, many studies were started without much scientific information and then abandoned without researching the results further,” he says. “It was found that transplant didn't work on other forms of breast cancer, yet with IBC, it does work. So there is hope.”

Volovar urges IBC victims to be hopeful. “While the transplant is not covered by insurance, there are experimental programs like NIH that can help,” she says. “The women who have undergone the stem cell transplant, most of them are doing well. It’s been 11 years for one woman.”

Source - The Frederick News Post

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