As if they were old friends: Compassionate physicians' cancer care

Four years ago, my sister found out she had two types of cancer at the same time. It was like being hit by lightning twice.

She needed chemotherapy and radiation, a huge operation, more chemotherapy and then a smaller operation. All on all, the treatment took about a year. Thin to begin with, she lost 30 pounds. The chemo caused cracks in her fingers, dry eyes, anemia and mouth sores so painful they kept her awake at night. A lot of her hair fell out. The radiation burned her skin. Bony, red-eyed, weak and frightfully pale, she tied scarves on her head, plastered her fingers with Band-Aids and somehow toughed it out.

She saw two doctors quite often. The radiation oncologist would sling her arm around my sister's frail shoulders and walk her down the corridor as if they were old friends. The medical oncologist kept a close watch on the side effects, suggested remedies, reminded my sister she had good odds of beating the cancer and reassured her that the hair would grow back. (It did.)

People in my family aren’t huggy-kissy types, but my sister greatly appreciated the warmth and concern of those two women. She trusted them completely, and their advice. Now healthy, she says their compassion played a big part in helping her get through a difficult and frightening time.

Bedside manner can go a long way toward helping people with cancer understand their treatment, stick with it, cope better and maybe even fare better medically.

Advice: Find a doctor whose skill set includes compassion.

Browse for related stories in the index at the very bottom of this page, or read a story on the role of compassion in healing.

Thanks to Denise Grady for the source story in the NY Times of Jan. 8.

I did it to myself, and so I better do everything I can to get out of it: Missed diagnosis of COPD

The crisis came five years ago for Jean Rommes, on a Monday morning when she had planned to go to work but wound up in the hospital, barely able to breathe. She was 59, the president of a small company in Iowa. Although she had quit smoking a decade earlier, 30 years of cigarette smoking had taken their toll.

After several days in the hospital, she was sent home tethered to an oxygen tank, with a raft of medicines and a warning: "If I didn't do something, life was going to continue to be a pretty scary experience."

Jean has chronic obstructive pulmonary disease, or C.O.P.D., a progressive illness that permanently damages he lungs and is usually caused by smoking. She has both emphysema and chronic bronchitis, as well as asthma. She had symptoms for years before receiving a correct diagnosis.

She began smoking in college in the 1960s, when she was 18. People whom she admired smoked, and it seemed cool. She smoked for 30 years.

When she quit in 1992, it was not because she thought she was ill, but because she realized that she was organizing her day around chances to smoke. But she almost certainly was ill. She was only 50, but climbing a flight of stairs left her winded. From what she found in medical dictionaries, she began to suspect she had lung disease.

By 2000 she was so short of breath that she consulted her doctor about it.

He gave her a spirometry test. In one second, healthy adults should be able to blow out 80% of the total they can exhale; her score was 34%, indicating moderate to severe lung disease.

"I don't know whether he knew," she said of her doctor. "I suspect he did, but he didn't call it emphysema. He put me on a couple of inhalers and he called it asthma. I sort of ignored the whole thing because the inhalers did make me feel better. I started to gain some weight, and things got progressively worse."

She cannot help wondering now if she could have avoided becoming so desperately ill, if she had only known sooner what a dangerous illness she had.

The turning point came in February 2003 when she tried to take a shower and found that she could not breathe. The steam all but suffocated her. She managed to drive from her home in Osceola, Iowa, to her doctor's office, struggle across the parking lot like someone climbing a mountain and collapse, gasping, onto a couch inside the clinic. Her blood oxygen was perilously low, two-thirds of normal, even when she was given oxygen. The hospital was next door, and her doctor had her admitted immediately.

She had Type 2 diabetes as well as lung disease, and her doctor told her that losing weight would help both illnesses. But she said, "He made it pretty clear that he didn't think I would or could."

Motivated by fear and anger, she began riding an exercise bike, walking on a treadmill, lifting weights at a gym and eating only 1,200 to 1,500 calories a day, mostly lean meat with plenty of vegetables and fruit.

"I came to the conclusion that if I didn't, I probably wasn't going to be around," she said. "I wasn’t ready to check out. And my husband was beginning to show the signs of Alzheimer's disease."

By December 2003, her efforts were starting to pay off. She went from needing oxygen around the clock to using it only for sleeping, and by January 2005 she no longer needed it at all. She was able to lower the dosage of her inhalers and diabetes medicines. By February 2005, she had lost 100 pounds.

The daily exercise also helped her deal with the stress of her husband's illness.

"I had no clue that exercise would do as much for ability to breathe as it did," she said, adding that it helped more than the drugs, which she described as "really pretty minimal."

"Exercise is absolutely essential, and it's essential to start it as soon as you know you have C.O.P.D.," she said.

"I will tell pretty much anybody that I smoked for 30 years, and I quit in 1992." Maybe it's why I've attacked this the way I did. OK, I did it to myself, and so I better do everything I can to get out of it. We all do things in our lives that are stupid, and then you do what you can to fix it."

Advice to former smokers: Exercise will help your lungs function better.

Browse for related stories in the index at the very bottom of this page, or read one of our COPD stories.

Thanks to Denise Grady for the source article in the Nov. 29 issue of the New York Times.

She has broken two ribs from coughing: C.O.P.D. and prednisone side effects

For many, trying to control chronic obstructive pulmonary disease (COPD), rather than be controlled by it, is a daily struggle. Diane Williams Hymons, 57, a social service consultant and therapist in Silver Spring, Maryland, has had lifelong problems with bronchitis, allergies and asthma. In the last five or ten years her breathing difficulties have worsened, but she was told only three years ago that she had COPD. It motivated her to give up cigarettes, after smoking for more than 30 years.

"I have good days, and days that aren’t as great," she said. "I sometimes have trouble walking up steps. I have to stop and catch my breath."

She is "usually fine" when sitting, she says.

Her mother, also a former smoker with chronic lung disease, has been in a pulmonary rehabilitation program. Diane's doctor has not recommended such a program for her, but she has no idea why. They have discussed surgery to remove part of her lungs, which helps some people with emphysema, but she said no decision had been made yet because it is not clear whether her main problem is emphysema, or asthma. She is not sure what her prognosis is.

She has been taking prednisone for years, something both she and her doctor know is risky. But when she tries to cut back, the disease flares up. She has many side effects from the drug.

"My bone density is not looking real good," she said. "I have cramps in my hands and feet, weight gain and bloating, the moon face, excess facial hair, fat deposits between my shoulder blades."

She has broken two ribs just from coughing, probably because the prednisone has thinned her bones, she said. She went to a hospital for the rib pain last year and was given so much asthma medication to stop the coughing that it caused an abnormal heart rhythm. She wound up in the cardiac unit for five days, and now says "never again" to being hospitalized.

Her doctor orders regular bone density tests.

"I know he's concerned, like I’m concerned," she said, "but we can't seem to kind of get things under control."

Advice to long-time smokers: Ask your doctor if you might have C.O.P.D.

Browse for related stories in the index at the very bottom of this page, or read a C.O.P.D. story.

Thanks to Denise Grady for the source article in today's New York Times.

Years of nagging are paying off: Progress in the war on cancer

The death rates from cancer are falling faster, according to today's Annual Report to the Nation by the American Cancer Society, National Cancer Institute and others. The death rate is falling more than 2% each year, about twice the pace of the previous decade. That means more than 10,000 people's lives have been saved each year.

"Years of nagging and pleading by health officials are finally beginning to pay off, experts say, in smoking cessation and increased use of mammograms, colonoscopies and other screening tests for colorectal and prostate cancer," in Denise Grady's words in today's NY Times.

But "it's still a minority of individuals that undergo screening for colon cancer. If everyone were screened appropriately, these incidence numbers would fall even more dramatically," said Dr. Neal Meropol of the Fox Chase Cancer Center.

Advice: Prevention can work.

Read another prevention story by Denise Grady, or read her source story in today's New York Times.

A glorious blend of forces: Presbyterian Health Plan and Whipple

Gordon Hendrickson is a retired administrator for the YMCA and the Spina Bifida Association, and now lives in Albuquerque, New Mexico.

Five years ago, at age 66, routine blood tests found something wrong with his liver. After more tests, he received a diagnosis of pancreatic cancer. His doctors thought they had detected it early enough for surgery to save his life. But he would have to go elsewhere for the rarely-performed surgery, they advised, because doctors in Albuquerque had little experience with the rare, complicated, and risky Whipple procedure he needed.

Studies show that treatment by experienced surgeons and hospitals with much relevant experience greatly increases the odds of survival for patients with pancreatic cancer, and indeed, for many other conditions.

Gordon’s internist, Dr. Kristine Bordenave, found a major cancer center in Houston that could safely perform the Whipple – M.D. Anderson. But his insurer, Presbyterian Health Plan, insisted on selecting from local surgeons who had each performed an average of only a single Whipple.

Since Presbyterian Health Plan had refused to pay for care at M.D. Anderson, Gordon used a new credit card for the deposit, and later got socked with $80,000 of medical bills.

He fought Presbyterian for a year, filing two appeals. He took his case to a state review board, where he had to represent himself because he could not afford a lawyer. He ultimately won the case, forcing Presbyterian to pay the whole bill.

In June, his five-year checkup showed he has been cured of pancreatic cancer. A glorious blend of forces – smart doctoring, luck, and his own wisdom and grit – had come together to save his life.

Advice: You don’t have to accept an insurer’s No as the final answer.

Read the source story in Denise Grady’s July 29 article in the New York Times.

I’d be dead if I’d stayed with the first provider: A cancer survivor

Karen Pasqualetto, age 36, is slight and dark-haired, with a soft voice. She has a law degree and a Type A personality, and worked for several technology start-ups. She made enough money to quit that career and do something she loved, teaching sixth grade at a Catholic school in Seattle.

After giving birth to Isabel by Cesaerean section last July, she noticed a lump under her ribs, the size and shape of a banana. Doctors noticed it but did nothing. Calling it a bruise, they sent her home.

Within a week she was back in the hospital, terribly sick – swollen with fluid, vomiting, so anemic she needed a transfusion, with severe abdominal pain. Tests found tht advanced Stage 4 colon cancer had already spread to her liver.

Crying, her doctor told her she had six months to live. Surgery was not recommended because the liver tumors were too extensive. Her doctor referred her to an oncologist for palliative chemotherapy to ease her symptoms rather than try to cure her.

Her health plan would only cover palliative care. But she had read enough about her disease to know that the proposed treatment plan did not include the full program of drugs typically recommended for Stage 4.

Her family urged her to look for other options. Her husband had a new job that provided better health coverage, and they switched to a different insurer.

"I’d be dead if I’d stayed with the first provider," she said.

She rejected the first oncologist after one visit and consulted the Seattle Cancer Care Alliance and Swedish Cancer Institute. Both recommended aggressive chemotherapy.

Her new oncologist, Dr. Philip Gold, told her "I have a lot of tricks up my sleeve. This is what we start with, and if it doesn’t work I have this, and then I have a clinical study." Karen said, "The feeling I got was, there was hope, and a plan of attack."

Karen recently celebrated her daughter’s first birthday.

Advice to cancer patients and their families: Aggressively seek second medical opinions from doctors who have extensive experience in treating patients with your disease.
Read the source story in Denise Grady’s July 29 article in the New York Times.

Something women themselves can do: Avoiding ovarian cancer misdiagnosis

The mother of a friend died years ago from ovarian cancer, so the good news to be formally announced on June 25 about its early detection hits close to home.

Dr. Barbara Goff and her colleagues found that one-third of women with ovarian cancer had initially received a misdiagnosis, e.g., of depression, menopause, irritable bowel syndrome, or "growing old." She said, "12% were told there was nothing wrong with them, and it was all in their heads."

“There are so many horror stories of doctors who have told women to ignore these symptoms or have even belittled them on top of that,” said a co-author, Dr. Debbie Saslow.

Ovarian cancer can grow and spread quickly, so even a few months’ head start in getting the diagnosis can be vital.

"This is something that women themselves can do," said Dr. Carol Brown of Memorial Sloan Kettering Cancer Center, "and we can familiarize clinicians with, to help make the diagnosis earlier."

Advice to women: If over the last 2 - 3 weeks you have experienced near-daily bloating, pelvic or abdominal pain, difficulty eating or feeling full quickly and feeling a frequent or urgent need to urinate, see a gynecologist, especially if this is new and different from your normal state of health.

Please help us spread the upcoming announcement by the Gynecological Cancer Foundation, the Society of Gynecologic Oncologists, and the American Cancer Society, by forwarding this to your friends.

Read another of our delayed diagnosis stories, or read Denise Grady’s source story in today’s New York Times.