Spreading the Word
By David Chesnick, Photos by Alex Stafford

HOWARD WAAGE FOUGHT HIS BATTLE WITH PROSTATE CANCER 19 YEARS AGO. SINCE THEN, HE’S HELPED HUNDREDS OF OTHERS FIGHT THEIRS.

January 24, 1997, was a big day for Howard Waage. His daughter Kerry delivered a baby boy, and Howard became a grandfather for the first time. It was also the day he met with Dr. Dattoli to begin treatment for his prostate cancer.

Nearly 19 years later, his grandson Marques is awaiting word from colleges while Howard, having triumphed over the disease, has been helping other men and their families meet the challenges they face at a support group in Santa Cruz, California.

The group was started nearly a quarter of a century ago when a man named Frank Bolle was diagnosed with advanced prostate cancer. Determined to help others, Frank started the support group, and though he lost his battle with the disease in 1999, Howard and five others members formed a steering committee to keep the group going.

They meet the last Tuesday of every month at the Dominican Santa Cruz Hospital, and its almost three hundred members have learned what Howard learned: that participation in a support group can greatly ease one’s sense of isolation during the journey from diagnosis through treatment to health and emotional well-being.

It certainly provided that for Howard.


Howard’s Journey Begins
His father had prostate cancer, so when a routine blood test ordered by his GP revealed a PSA of 11, Howard saw a urologist who told him he was too young at 50 to have the disease. And though the urologist did a biopsy that was suspicious, he told Howard not to worry, that he was fine.

Soon after, on a business trip to St. Louis, Howard developed some urinary tract problems, so he saw another urologist and had another PSA test. He was back in California when the St. Louis doctor contacted him with the news that his PSA was now 31 and he had prostate cancer. The doctor, who was a surgeon, recommended immediate surgery.

Howard became depressed and felt isolated. Frank, a neighbor and friend, was the first non-medical person to provide him guidance, and he suggested that Howard do some research to explore other options. An aggressive researcher, Howard went online and learned all he could. He even posted his story on a prostate message board. Within a few days, he heard from Dr. Steven Strum, a medical oncologist who specialized in prostate cancer. Strum recommended a consultation and got Howard admitted to one the country’s top hospitals, at the University of California at San Francisco, where he was examined by some of the top doctors in the field.

The hospital was just beginning to do brachytherapy, and while Howard liked the approach and wanted to try it, he wanted a doctor more experienced in the procedure. Dr. Strum told him about Dr. Dattoli, who had already done hundreds, if not thousands, of the procedures and was enjoying great success with the approach.


Patient and Doctor Meet
Howard made the cross-country trip, flying to Florida to meet the doctor and learn more. Their meeting quickly convinced Howard that Dattoli was the man he wanted to treat his disease. He returned home to California before returning to Florida in January 1997 in his RV.

Over the next six weeks, while he lived in his RV, Howard underwent 23 sessions of radiation. Six weeks after that part of the treatment ended, Howard had seed implantation in March. By May, his PSA was 0.0 and it’s remained there for 19 years.


You’ve Got To Have Friends
But while his own cancer was in remission, Howard felt the call to help others, and his involvement in the Santa Cruz support group began in earnest. That started with making several changes after Frank Bolle’s passing.

First, to take the onus of keeping the group together off of a single individual, a steering committee, with Howard as a founding member, took over the group. Frank’s group met at lunch; the steering committee decided to meet in the evening, when more men would be available.

They also made two decisions that greatly extended their reach in the community. Believing that battling prostate cancer was something the entire family was involved with, they invited women to join. They also decided to do more community outreach. They invited local urologists, oncologists and specialists in the field, as well as doctors from the UCSF Medical Center; they ran public service announcements on radio and ads in local papers announcing special events.

Two of the group’s most important and successful attempts at outreach began with having their written materials translated into Spanish, so they could involve the local Hispanic community. The other was to get into local high schools and talk to young men. The group was surprised to discover that the young men knew more about breast cancer than prostate cancer, a fact that only strengthened their resolve to get out more information and grow awareness.

And so their work to keep their mission alive continues: "To support and share information with men and their families on the various aspects of prostate cancer in a confidential and supportive environment and provide ongoing education, communication and support within the community."

Our hope, and the hope of all those he’s helped, is that Howard is there to lead the group for at least another 19 years.