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Towns turn teal for cancer

(by Erin Patricia Griffiths - September 10, 2008)

Staff Photo By Erin Patricia Griffiths On the morning of Tuesday, Sept. 2, Loryn Satnick of Woodcliff Lake , Suzie Jerome of Park Ridge and Jodie Elyashar of Upper Saddle River , tied ribbons around trees throughout the borough for the ‘Turn the Town Teal’ campaign in Bergen County . In addition, they delivered pamphlets to several locations that are frequented by women where they can pick-up a handout, which includes signs and symptoms of ovarian cancer as well as an ovarian cancer risk survey.

Scanlon has undergone two rounds of chemotherapy and recently underwent major surgery to remove a tumor in her brain. Presently, she is awaiting results from her doctors as to whether she will require full brain radiation or gamma knife radiation to attack another lesion in the back of her brain that may be in front of yet another lesion. But the hardest part for Scanlon is the knowledge that had her cancer been caught in an earlier stage, she would have a greater chance at survival. “I knew something wasn’t right, and I just didn’t know what it was. I listed all the things that were symptoms, but I didn’t know I had to be my own advocate,” said Scanlon.

Scanlon first began going to her regular gynecologist four years ago with symptoms indicative of ovarian cancer, but was told her bloating and other symptoms were signs of menopause, and was encouraged to exercise to relieve discomfort. When the symptoms continued without relief, she continued to go back to her doctor and was put on hormones, which caused the undiagnosed cancer to spread even faster.

Scanlon requested a second sonogram, as one had been performed in one of her earlier visits. But the doctor declined and instead had a dilation and curettage, commonly referred to as a “D and C,” a procedure to scrape and collect the endometrium from inside the uterus, performed on Scanlon by one of her interns. She was also sent to a gastroenterologist to see if the symptoms were related to intestinal problems. Often times gastroenterologists get a number of crossover patients who are suffering from ovarian cancer but are exhibiting signs similar to gastroenterological problems. She was put on Prilosec for what was thought to be an indigestion ailment. But again, the continued misdiagnosis of Scanlon’s cancer left the disease spreading through her body. “It gave it a great deal of time to spread; nine months of no treatments,” she said.

Upon the recommendation of family members, Scanlon went to another gynecologist who recognized her symptoms as red flags. She found a 12-centimeter cyst while performing a sonogram and a CAT scan confirmed the diagnosis. After nine months of trying to get someone to pay attention to what Scanlon knew was a serious problem, she began treatment for ovarian cancer of the lymph nodes. “It’s been a struggle. It’s just been one step at time,” she said. “It’s OK, I seem to be fighting the fight,” she continued.

Scanlon was never diagnosed by her primary gynecologist and originally intended to pursue a lawsuit against her for misdiagnosis but has dedicated herself instead to her treatments, her battle with cancer, and raising awareness to help other women. “I didn’t have time to concentrate on lawsuits. I have to concentrate on wellness,” she said. “You have to fight the fight, not the things that aren’t good for you.”

Unfortunately, the hormone treatments caused the cancer to metastasize and move into the brain. But Scanlon is as determined to fight the cancer that has invaded her body for four years as she is to fight to raise awareness for other women. “My sister-in-law is really the true hero in the whole thing because to be so sick and to be so proactive and running around and talking to people, trying to get information out there, is pretty incredible when you are so sick,” said Satnick.

Scanlon has been very active in the Maureen Fund, which is a prevention and early detection program through the John Theurer Cancer Center at Hackensack University Medical Center . In an effort to support Scanlon’s dedication to awareness and the search for a cure, Satnick has elected to participate in the National Ovarian Cancer Awareness Month county-wide program, “Turn the Town Teal.” To raise awareness for the disease many call the “silent killer,” volunteers are placing 50 or more teal ribbons around trees in participating towns in Bergen County . On the morning of Tuesday, Sept. 2, Satnick and two other volunteers, her sister-in-law Suzie Jerome of Park Ridge and friend Jodie Elyashar of Upper Saddle River , assisted in tying ribbons around trees throughout the borough. In addition, they delivered pamphlets to several locations that are frequented by women where they can pick-up a handout, which includes signs and symptoms of ovarian cancer as well as an ovarian cancer risk survey. According to Satnick, the survey can be mailed back for possible follow-up if the information evaluated indicates the necessity for further screening with a free consultation at the Cancer Center at HUMC, provided by funding through the Maureen Fund. “By the time you are really starting to show the signs of it, it’s too late,” said Satnick.

Raising awareness and being proactive about getting attention once exhibiting symptoms of ovarian cancer are the forefront of Scanlon’s crusade, as well as being the driving force behind her family member’s dedication to the cause. “So much research is done for breast cancer research, but very little is done for ovarian cancer,” said Satnick.

Ovarian cancer is one of the leading causes of death in the , the fifth deadliest cancer for women, with more than 20,000 women diagnosed annually and approximately 16,000 women who will not survive each year. “The symptoms of ovarian cancer are so hard to detect because they could be other things. They aren’t taken seriously,” said Satnick. “There are too many doctors who are too lax about it.”

One way in which to detect ovarian cancer in the early stages is to receive a CA-125 test, which detects levels in the blood of cancer antigen 125. But due to the potential of false positive results, many doctors are not in favor of making this test a part of a routine gynecological visit. “Insurance companies will not cover CA-125. Men have PSA [prostate-specific antigen] covered routinely, but women are not given the test,” said Satnick. “The reason they don’t and why a lot of gynecologists are against it, is you do get a lot of false positives. But if something goes off, you pursue it. It is a preventative measure,” she continued.

Much of the frustration and discouragement Scanlon has felt comes from her struggle with insurance companies and trying to find support from doctors to institute the CA-125 test as part of a routine exam. “This is what aggravates me the most, women’s health care is not there,” said Scanlon. “It is not existent in a way that we need it to be. We have to be our own advocates for women’s health.”

The support of the Maureen Fund and the team of doctor’s working together with Scanlon in her struggle have been encouraging for her. “The Maureen Fund has been absolutely amazing. They have really tried to accomplish a lot of things,” said Scanlon. Daniel H. Smith, M.D., vice chairman of the John Theurer Cancer Center , chief of the Gynecologic Oncology Division, has been actively involved in treating Scanlon. “He’s been in the fight with her,” said Satnick. 

Dr. Donna McNamara of Park Ridge, attending physician for the Division on Gynecologic Oncology at the John Theurer Cancer Center at HUMC, has been involved with the Maureen Fund since its inception in October 2005. The loss of her mother to ovarian cancer while McNamara was studying in medical school inspired her to dedicate her life to raising awareness, preventing, diagnosing, and treating this deadly disease. Her message to women reflects that of Scanlon and so many who have suffered the pain of ovarian cancer. “Dr. Smith always says, who loves you the most? And the answer is yourself,” said McNamara. “Take yourself seriously. If you have symptoms that are different to you, take them seriously. Find a physician who will listen to you and take you seriously.”

The nature of the disease is such that it takes a significant amount of time, in most cases, for the symptoms to become such that a patient can feel something is wrong. “It is called the silent killer because ovaries are just hanging in space, and even if you have a growth on the ovary, it kind of just pushes things aside, it doesn’t push on anything in a specific area,” said McNamara. “Ovarian cancer does not produce symptoms until the disease has spread throughout the abdomen to where you can actually feel it. It is not necessarily the rate of the spread, but just a matter of how much time it takes to get to a point where the symptoms can be felt,” she continued.

Unlike many who feel the CA-125 test is a tool for diagnosing ovarian cancer in the early stages, McNamara feels it is not an optimal screening tool. “It is a great tool for women who have a diagnosis of ovarian cancer, but as a screening tool in and of itself it is very misleading,” she said. “We need a test that is easy to do and is cost effective.”

While the goal of the Maureen Fund is to screen women who are high risk for ovarian cancer, the participating doctors and specialists are looking to expand the program and increase the number of clinical trials being conducted, as well as keeping awareness at the forefront of their cause. “Slowly but steadily we are increasing the awareness of ovarian cancer. Hopefully we are teaching women to be more aggressive when feeling the symptoms and to find another doctor who will listen and take the time to diagnose them,” said McNamara. But she continued to reiterate the challenge of diagnosing this silent killer. “Because the symptoms of ovarian cancer are so nebulous, bloating, change in bladder habits, irritable bowels, all symptoms could be used to diagnose other diseases. By the time we actually discover what is going on, by the time they develop ovarian cancer, it is usually in the later stages of disease,” she said.

So for Scanlon and so many women, who are suffering from ovarian cancer, the race is on to find effective treatments and to continue to fight for women’s health, persevering in the mission to raise awareness and find a cure. “Is she going to survive? Hopefully long enough to where they can find a cure,” said Satnick. “She is such a crusader, such an upbeat person, you could spend an hour with her and never feel sorry for her. She is so active and this is her crusade.”

Until there is a cure and more women can be saved from the disease that has attacked Scanlon’s body, she and her family will continue their crusade. They will continue their fight as women’s health advocates, for those who passed silently and can no longer voice their struggle.

Erin Patricia Griffiths' e-mail address is GriffithsE@northjersey.com.