'It's living with this that's hard'

It was a numbingly cold night five years ago when Susan Meehan had her epiphany. She'd taken to sleeping with the window open, and howling coyotes woke her.

As she gazed outside the window in her Concord home, the moonlight cast a beautiful blue glow over the snow. Somehow, the scene brought into better view the dread she had defined as a fear of dying. She'd been diagnosed with breast cancer -- first flagged by a routine mammogram -- only days before.

Slowly, the real source of her fear dawned on her.

"I realized I'm not afraid of dying," said Meehan, now 47 and a resident of Marblehead. "Dying is easy. It's living with this that's hard."

Last month, a normal mammogram marked five years since her diagnosis and treatment -- a milestone to breast cancer survivors.

Meehan never questioned her physician's urging to have a mammogram beginning at age 35. She had an aunt with breast cancer and decided that if the disease ever struck her she wanted to catch it early.

Still, each mammogram brought with it tremendous anxiety. "For any person that is going in for a test that is to show cancer, there is always that risk," said Meehan, a social worker at Beth Israel Deaconess Medical Center.

Five years ago, health workers called her back for a followup mammogram at Mount Auburn Hospital when her film showed a suspicious lump. Next, she had an ultrasound and a biopsy. Then came two "painful days" of not knowing whether the lump was cancerous. "On the second day I was just pacing," she said. "I couldn't imagine why they were taking so long. To me, it felt like a lifetime."

After her diagnosis, Meehan underwent a lumpectomy followed by radiation and chemotherapy. The 1.7-centimeter tumor was larger than doctors had expected. But Meehan's physicians said the disease was in the early stages and had not spread.

Family members attended some of the chemotherapy sessions with her, and on weekends after treatments she often stayed with friends. To focus on her healing, Meehan wrote in a journal, did yoga and joined a support group at the hospital, where she met women whose mammograms didn't spot their cancers. Meehan said she believes her mammogram saved her life.

Nonetheless, she said she can understand the ambivalence some women may feel about mammograms, particularly when they hear about others who received "false-positive" results and later learned the masses were benign.

"It's a tough one but, for myself, I want to know what the answer is."

Last month, after good news from her mammogram, Meehan arrived home to find her house filled with balloons. Family members sent her roses. And she toasted her health at celebratory dinners with friends. She said she still thinks about her bout with the disease at least a few times a week, and the possibility that it could return. But she doesn't fear it every day.

Reaching the five-year mark, she said, "has made me realize I beat the cancer. I sit here and say, `Wow, I'm alive and I'm doing great.' "

Doctor holds off on tests
He's one of the top officials at the National Institutes of Health and has spent much of his career studying cancer. He has watched a close relative struggle with prostate cancer, and he had his own melanoma scare in his 20s. So it might seem strange that Dr. Barnett S. Kramer has chosen not to undergo a common test that screens men his age for prostate cancer.

But actually it's Kramer's work in the field that led him to delay making a decision to get the PSA himself. What weighs on his mind is over-diagnosis, a controversial consequence of PSA testing in which the screening sometimes detects extremely slow-growing cancers that would never cause health problems, even if left alone. Treatment for prostate cancer can lead to life-altering side effects, including urinary, sexual and bowel problems.

"If I have to suffer those consequences, I want to be very confident that I got some benefit," said Kramer, who is 55.

Kramer stresses that his opinions about the PSA are personal and don't reflect a position by the NIH, where he heads up the Office of Disease Prevention.

Cautioning that his decision isn't right for everyone, he urges men to become informed about their own risks for the disease and the advantages and disadvantages of being screened. "I'm not opposed to screening for people who know all the ins and outs, even if the majority of men who listen to what we know decide they want to be screened," he said. In fact, Kramer has undergone other types of routine screening, including one for colorectal cancer.

The PSA test measures the presence of a protein -- prostate-specific antigen -- that can signal prostate cancer if it's elevated. Originally developed to monitor the progression of prostate cancer, it has been widely used as a screening tool to detect the disease in its early stages.

Its use has spurred debate because of concerns about over-diagnosis as well as false-positive results. High PSA levels can be triggered by conditions other than cancer, and a biopsy of the prostate (in which tissue samples are removed with a needle) usually answers the question -- but not until after a period of anxiety. Kramer knows that kind of anxiety firsthand.

In his late 20s while in medical training in St. Louis, he noticed an inflamed mole on his upper arm and was told it was a melanoma -- the deadliest form of skin cancer. "I was almost incapacitated for a day," he recalled. "I was so anxious that I started to think, `Gee, should I finish out this month? I've never been in Europe,' and on and on. . . . Priorities changed."

The next day Kramer learned it was a false alarm. Even after that experience, though, Kramer said he's not worried about a false-positive on a PSA test because that's a temporary problem. Side effects from treatment of prostate cancer are another issue.

Kramer, an oncologist, has a relative who was diagnosed with prostate cancer 25 years ago. Although the man remains in remission, he continues to suffer complications from the cancer treatment. Kramer, who said he's not at high risk for prostate cancer, is trying to weigh the benefits of the PSA test against the treatment's harms.

He eventually may change his mind and get the test. Kramer said he is awaiting the results of a 154,000-person study by the National Cancer Institute -- which he helped launch more than a decade ago and still helps oversee -- that aims to someday settle the debate over universal screening for a range of cancers. "I'm reserving judgment."

Coping with the anxiety
It's just another cyst, Michele Topor thought. There's no point in panicking. She had been through it before. Over the years, Topor had had a series of abnormal mammograms. Yet followup procedures always proved that what doctors saw on the film was a harmless cyst, not a cancerous tumor.

But last year, when a routine mammogram at Massachusetts General Hospital showed something unusual, the followup tests did not yield the reassuring results she had come to expect. More mammograms followed, and an ultrasound. For two months, Topor worried that she had breast cancer, while holding out hope that it was a false alarm. Ultimately, doctors performed a biopsy that left a 2-inch scar, so they could test the tissue for cancer.

"I could remember being completely off the wall," said Topor, who is 58. "I had one hell of a month last December."

Topor, who lives in the North End and leads culinary tours of North End markets and parts of Italy, was a kidney transplantation nurse for 30 years. Her background led her to start getting mammograms in her 30s -- years before they're typically recommended -- even though she didn't have any of the risk factors for breast cancer.

"In my past," she said, "I'd seen so much crisis-oriented medicine" directed at people with very advanced illness. "I think we all have to be preventative."

Early on, Topor was diagnosed with fibrocystic breast disease, a common condition in which breast tissue undergoes benign changes that can make the breasts feel bumpy and tender.

So, when her annual mammogram last fall revealed something suspicious, Topor wasn't worried at first.

"I'm always saying, `It's another cyst, it's another cyst,' " she said. She underwent a test at Massachusetts General Hospital in which doctors inserted a needle into the mass to draw fluid or tissue. But those results -- along with more mammograms -- were questionable. Her doctor's office called with what she viewed as ominous news: She should see a surgeon. "I certainly thought cancer," she said.

Topor, who is single and has no children, relied heavily on the comfort of a friend who had had a similar experience a few months earlier. She also found solace in her work. Despite not knowing what her fate held, she opted to lead an already-scheduled culinary tour of Italy, because her surgeon said the biopsy could wait.

"I just kept saying, `It's going to be OK,' " she recalled. "It's always in the back of your mind. Thank God I was busy with the group in Italy."

When she returned, she underwent surgery in December. After an agonizing weekend of waiting, Topor got the final result: It wasn't cancer. She had a fibroadenoma, a benign lump that was different than the cysts she had had in the past.

"I cried," she said. "The relief is amazing."

Several months after her ordeal, Topor said it was worth enduring weeks of anxiety to learn in the end that she was healthy. The scar will continue to fade. Her best advice to other women, she said, is to get a mammogram.

"What I've learned from the experience is it's not always a terrible outcome. And I think you have to keep that in mind. I think also for peace of mind, go with the flow. Just do it."