William Caisley wants people to know that men can have breast cancer too

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buy this photo William Caisley campaigned for and won a seat on the McLean County Board at the same time as he was battling breast cancer.

William Caisley asked himself, "Why me?" He found the answers sitting in the waiting room of Dr. Richard Trefzger two years ago after he was diagnosed with breast cancer.

A poor Hispanic man with no insurance was talking with the doctor's bookkeeper about how his bill was going to be paid.

"I wondered why me? Well, I have Medicare. I have a quality care healthplan through the state. I'm in a much better position to withstand the financial angle than he is," the retired judge said.

He saw an elderly woman "very frail looking, beautiful white hair, printed silk dress, and she looked like a good swift wind would blow her away. And I thought, 'You know I'm in a lot better position to withstand a surgery than she is.'"

He overheard a young couple, the wife sobbing, asking if she could come into the doctor's office with her husband. "I thought they probably had a couple of kids at home and a surgery is going to set that back. He might not be able to work and here I am retired. Why me? Well I'm certainly better able to deal with those things.

"It was like God put those people there to answer the question, 'Why me?'" the 72-year-old said.

On April 15, 2006, Caisley went in for his annual physical examination with Dr. Michael Cochran. After a series of tests, the doctor told him he was in great shape and asked if there was anything wrong.

"I said well, I have this little bump on my chest," Caisley recalled. The doctor was reassuring, telling him men almost never get breast cancer. After an inconclusive ultrasound, Cochran suggested maybe he should have it taken out anyway.

Caisley went to surgeon Trefzger, who also reassured him that there was "not much room for worry because men almost never get breast cancer, but we ought to set a date and take it out, so I said okay."

After the lumpectomy in May, they discovered the tumor was malignant. Caisley became one of the few male breast cancer patients.

According to the American Cancer Society, 1 out of every 111 breast cancer patients is male. "There will probably be, according to the American Cancer Society, 1,990 cases of male breast cancer diagnosed in the United States this year and probably 450 deaths," said Caisley, reading from reams of notes and information. The death rate for men is higher than for women because women get mammograms and examine themselves "and men almost never get breast cancer. We all think that. The doctors even think that."

After the initial lumpectomy, Trefzger wanted him to schedule a lymph node excision and a mastectomy. He refused to have the mastectomy.

"I felt perfectly good. I didn't feel sick at all. And I was a little bit reluctant to just proceed with a major surgery," Caisley said. He did go ahead with lymph node procedure, even though the cancer had not spread to his lymph nodes.

Caisley then started doing some research and ended up at Northwestern University, talking to Dr. William Gradishar. Gradishar also recommended the mastectomy.

Another doctor, Dr. Nora Hansen at Northwestern also said there was an insufficient margin, or the area around the where the tumor was, and they would have to perform surgery. He had same-day surgery July 3.

"I was invited to a lawyer friend's house up in Morris to an Independence Day party so when I came out of the anesthetic, I was bandaged up, but I felt pretty good so I went to the party anyway," Caisley said with a chuckle. "The doctor told me I was an extraordinarily difficult and stubborn patient."

Caisley eventually agreed to a new test, Oncotype DX, a genome test that determines the likelihood of breast cancer recurring (See story, page 6) and what if any chemotherapy was necessary.

"Dr. Gradishar assured me that mine would be a very low recurrent score so I said okay, so they packed off a paraffin block slice of the tissue from my tumor. Then I got back the score and it was 31, just over the questionable range," Caisley said.

Late in August, he started chemotherapy every two weeks for four hours. They warned him that he was going to lose his hair and possibly some toenails and finger nails. He looked at wigs but "They all looked terrible. They looked like haystacks. And I couldn't do that."

One night in the fall of 2006, he was in Stanford performing a wedding rehearsal. He had a full beard and head of hair. After he got home from the rehearsal, his hair started to fall out.

"In the morning my beard looked thin and wispy, just awful," Caisley said. "My hair looked awful. So I just shaved it off. I had to go out and perform the wedding and the bride and groom didn't recognize me."

During his chemotherapy campaign, he was also running a campaign of a different nature. Nominated by McLean County Republicans for a seat on the county board, Caisley was going door-to-door campaigning in the evenings.

But one of the chemicals in his therapy attacks the lining of his tear ducts, causing them to drain incorrectly.

"You have tears that overflow your eyes and down your cheeks," Caisley said. "And it was very cold and windy in October and I was out and I couldn't take enough Kleenexes with me to make it look like I wasn't crying while I was campaigning." He won the four-year seat.

Also during that time, his mother in Morris passed away. Her death showed him that life is "finite."

"When you no longer have a parent, that brings everything into focus as well.

"When you're feeling well, and perfectly normal, it's hard to believe. It's hard to internalize that you really have a life-threatening disease. That's something you have to deal with."

Two years later, Caisley is on hormone therapy, which he will continue for at least three more years.

He remains up-to-date and well-informed about breast cancer, encouraging men not dismiss the possibility.

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