The Prevalence of Cancer – Feeling the Reality

For some, cancer statistics are just numbers. Maybe the prevalence of the disease is too frightening to think about – even though many people survive, recover and live long lives. The National Cancer Institute estimates that there are more than 8.9 million cancer survivors in the United States.

Still, more than 1.3 million new cancer cases are expected to be diagnosed in 2003, according to the American Cancer Society. Before coming to work at M. D. Anderson, the CancerWise editors had not contemplated the pervasiveness and impact of the disease – until it confronted their own families. Through their experiences they learned that cancer is a condition that not only brings challenges but also hope. Their stories are shared below.

A Family Walks with Father through Prostate Cancer

Until late 1998, no one in my family had been diagnosed with cancer. Within a year, three relatives were told they had the disease.

During that time, my sister-in-law and father were successfully treated (for breast and prostate cancers, respectively). They have been cancer-free now for several years. Sadly, my aunt died from pancreatic cancer in 1999. 
 
I saw my father the most during his illness since he chose treatment in the Texas Medical Center in Houston. He was very open about his experience, even allowing my sister and I to accompany him for second and third opinion consultations.

My father, a retired Air Force major, was diagnosed in November 1998 at Lackland Air Force Base in San Antonio after undergoing an annual prostate cancer screening, the PSA (prostate-specific antigen) blood test. He had become accustomed to the annual screenings while in the service, being that the Air Force required men to begin getting them at the age of 40. (Current guidelines for the general public recommend annual digital rectal exams and PSA tests beginning at age 50, or 45 years old for men at increased risk – African-American men or men with a family history of prostate cancer.)

Complexity of Detection

PSA is a substance made by the normal prostate gland, which is present in the blood in small amounts. According to the American Cancer Society (ACS), most men have levels under 4 nanograms per milliliter (ng/mL) of blood. The PSA level usually goes above 4 when prostate cancer develops, the ACS says, and the higher the number, the higher the chance of prostate cancer. My father discovered, however, that it is possible for cancer to be present with a PSA level much lower than 4 ng/mL.

My dad’s PSA was 2.5, well below the current 4.0 indicator, and there was no sign of problems in preliminary digital exams. He was therefore told there was a very good chance cancer may not be present.

The problem was, however, that his PSA had changed significantly since his last test. It had actually dropped, which seemed positive. But then my father was told about another indicator called PSA velocity. The term means that any PSA change of .75 ng/mL or more within a year’s time could signal suspicious activity and therefore warrants a biopsy. Taking this information to heart, my father had a biopsy. It showed cancer throughout his prostate.

Arming Ourselves with the Facts

“Once I heard ‘cancer’ I just shut down,” my mom recalls. My dad, also in shock, began researching the disease. My brother, sister and I also began gathering facts, then my dad called a family meeting to discuss his treatment options.

He was leaning toward a radical prostectomy (surgery to remove the prostate) and contacted a highly respected urologist at Johns Hopkins School of Medicine. The hospital was too far from my parents’ home in Austin, Texas, however, and the wait for an appointment was long. The doctor recommended two of his protégés, both located in Houston.

He chose one of them. I still have the notes from their first meeting. I will never forget the respect, time and patience this doctor gave to my father. On Feb. 3, 1999, my dad, then 69, had surgery to remove his prostate. It was discovered that the cancer was contained to the prostate and had not spread.

Today, when an opportunity presents itself, my dad shares his cancer experience with people, especially with members of the Austin chapter of US TOO, an international prostate cancer support group. His treatment was successful because it was caught early.

I am grateful for his attention to his health and hope his openness might help other men. His experience has given me added enthusiasm for my job as a writer and editor of this cancer publication. I hope our words may raise awareness and help other families deal with the disease successfully.

– Darcy De Leon
CancerWise writer, editor

Mother’s Breast Cancer Experience Lingers in Daughter’s Mind

Breast cancer struck my mother and maternal grandmother the very same year, Christmastime 1997. Their vastly different experiences still reverberate within our family.

Grandma, who had a lumpectomy at age 72, trusted her doctors completely and followed their guidance without much need for question. My mother, on the other hand, read every book and study report she could get her hands on. While my grandmother joined local support groups, mom chose to be selective about sharing her diagnosis. Only immediate family members and a few friends knew.

At age 48, mom had ductal carcinoma in situ, cancer of the ducts that carry milk. It hadn't invaded the neighboring tissue, but it was fast-growing. She needed surgery and radiation.

At first, I wasn’t too worried. My grandmother seemed to be in good hands, and my mother's cancer had a 95% survival rate after five years. But mom aspirated in the surgical recovery room, possibly from the morphine. For three horrific minutes, a nurse squeezed a plastic bag to force air into her lungs, then mom finally breathed on her own. I was 1,800 miles away in Galveston, Texas, and I’d almost lost her. When time came for follow-up radiation, I flew to mom’s home in Canada to be chauffeur for the last two weeks of appointments, when fatigue kept her from driving and seeding season kept my step-father, a farmer, in the fields.

When mom was diagnosed with a second lump in 2000, we all were devastated. Hers was supposed to be a relatively straightforward process; none of us expected she’d be in the 5% of women in whom the cancer would return. This time, I took no chances. I flew home again, joining my stepfather in pre-op and holding mom’s hand just before the surgeon wheeled her away to have both breasts removed. Though the cancer had recurred in the very same breast, mom wasn’t taking chances, either.

Hope for the Future

Near the waiting room on mom’s floor was a library, where my stepfather and I found a book with beautiful photography of women after various types of breast surgery. I think it helped us to see that together. The unknown loomed large before us, and these women appeared vibrant and solid, despite their visible scars.

Today, both my mom and grandmother are fine. Grandma’s lumpectomy removed a mass the size of a golf ball, and all 18 neighboring lymph nodes tested malignant. Despite the startling magnitude of her diagnosis, she seemed to fly through follow-up radiation and chemotherapy, losing very little hair. She and my grandfather celebrated their 50th wedding anniversary in 1998, the same month her chemo ended. Her checkups have been clear ever since. She still copes with lingering swelling in her left arm – a side effect of surgery – but it doesn’t keep her from gardening, her greatest love. She still grows some of the most prize-winning flowers in her rural county.

Each Cancer Journey is Personal, Precious

Mom, too, is faring wonderfully. Slowly, she has begun to share her story. The hardest part for me – besides being faced with her mortality and possibly my own – was being unable to talk widely about what we were going through. To protect my mom’s privacy, few people knew the purpose of my lengthy visits to Canada, not even my father (my mother’s ex-husband).

That bothered me once, but not anymore. Over time I have realized that cancer, like life and like any other disease, is a road traveled uniquely by each person. Only my mom could have found her particular kind of joy striding the beaches of Galveston in a brand-new tank top, three weeks after her double mastectomy, joking about being a flat-chested teenager again. (She chose not to have reconstruction.) Anonymous among strangers, she found a freedom on that beach that might have been elusive in her own small community, where privacy is sometimes hard to engineer. Now, as she’s become comfortable in her new body, I have become confident that I could handle breast cancer were it ever to visit me.

– Alana Mikkelsen
CancerWise writer, web editor