Tuesday, February 19, 2008

Some Cancer Patients Turn to 'Coaches'

Feb 18, 5:40 PM (ET)

By MARILYNN MARCHIONE

The advice made her head spin: Have the lump removed. No, let them take the whole breast. Chemo? Radiation? Everyone seemed to have an opinion.

"I just shut everyone down around me," said Bernie Brann, a newly diagnosed cancer patient from upstate New York. "You're just so overwhelmed with information."

Bad advice, or just too much of it, can compound the trauma and damage done by the disease itself, cancer patients often find. Friends and relatives are important for support, but when these untrained people act as cancer coaches, they can sway people to make poor decisions about their care.

This includes survivors, whose opinions are highly valued by patients suddenly facing the scary diagnosis. They may know a lot about cancer, but can do harm if they project their own experiences onto someone else, who may have a different form of the disease that needs different treatment.

Survivors also may be out of touch with changes in the field, where genetic discoveries are rapidly reshaping notions of who needs chemotherapy and what kind.

What's the solution?

Many advocacy groups and hospitals are using "professional" coaches - trained volunteers or paid workers who can objectively help new patients navigate the maze of information and options.

The American Cancer Society started a patient navigator program a few years ago that now operates in 87 locations and is planning to expand. The National Breast Cancer Coalition also trains coaches, and big treatment hospitals like the University of Texas' M.D. Anderson Cancer Center are increasingly using them for breast, prostate, lung and other types of cancer.

Attendance set records in December at one of the top training programs, held during the San Antonio Breast Cancer Symposium. More than 240 breast cancer survivors spent late nights at the convention center, taking notes as scientists schooled them on the latest research.

These women go home to volunteer in hospitals and support groups where they staff hotlines, meet with new patients and teach other coaches what they learned. Demand for this training is so great that the Alamo Breast Cancer Foundation gets grants from the Avon Foundation and nine drug companies to subsidize some attendees, but still can't meet the need. Dozens are turned down each year.

To find a coach or navigator, patients can ask their doctors, local cancer hospitals or groups like the cancer society for help. Brann, feeling a need for unbiased help, found a coach by calling the Cancer Resource Center of the Finger Lakes, where associate director Bob Riter provided it.

"People are usually too free about giving advice," said Riter (pronounced RITT-er), a survivor of male breast cancer and graduate of the San Antonio program. "We never tell people what to do. We provide information, and we help them think out loud."

Whether amateur or professional, a good cancer coach should offer these things, experts say:

_Support: an ear to listen, a shoulder to cry on, a hand to hold.

_Resources: reliable information or help getting it, and only if the patient wants it.

_Objectivity: a willingness to help patients discover what is best for them, rather than to validate the coach's own cancer battle and choices.

"There's a big difference in saying, 'This is what I did' and 'Here's what you should do,'" Riter said.

Elderly people are especially vulnerable to having their decisions usurped, he added. "Sometimes middle-aged kids impose what they want to do on their parents" without asking what the parent wants.

No hard numbers exist on how many cancer patients bring professional coaches or informal ones - a relative or friend - to doctor appointments where treatments are discussed.

"The person coming with you can either be an asset or a liability," said Meg Gaines, a lawyer and ovarian cancer survivor who runs the Center for Patient Partnerships, an advocacy resource at the University of Wisconsin-Madison.

It is good if the coach can ask questions, gather information and take notes for the shell-shocked patient to use later, she said. It is bad if the coach interferes with the patient's decisions.

Doctors often find themselves in the middle, fighting for the patient's trust. Some choices come down to personal values and risk tolerance, said Dr. C. Kent Osborne, a breast cancer specialist at Baylor College of Medicine in Houston.

Whether to have chemotherapy is an example. Some women want to avoid it at all cost. Others "don't want to leave any stone unturned," and demand it even if it has harmful side effects and only a 1 percent chance of helping, he said.

As for patients being swayed by others, "a lot of that occurs when they're not in the doctor's office and they go back to their home and their community," Osborne said. "Then well-meaning friends might say, 'Well, gee, I was treated with this and you should get that,' or 'Aunt Molly got this and you should get that, too,' not understanding that every patient is different."

Patients can fall into the same trap when they coach each other, Gaines said.

"This is the potential downside of support groups - you don't have expertise around the room," she said. "Someone may be describing her own treatment and others will think, 'My doctor didn't tell me that,'" possibly because their cancer is different.

Mary Michaud, policy director at the Wisconsin center, warns: "Beware of people who tell you your experience is going to be just like theirs."

Anna Cluxton, a Columbus, Ohio, woman diagnosed with breast cancer at age 32, feels strongly that she did the right thing having her whole breast removed rather than just the lump. When she coaches other young women whose doctors have advised less drastic surgery, she said she will not express an opinion, but suggests a pointed question: "Ask them, 'What will be my chances of recurrence in that same breast?'"

"You need to be aware of all the options" and discuss them fairly, she said.

Vira Brooks, an Omaha public schools administrator, had a different experience 13 years ago. Although she had a tiny, very early-stage tumor, her surgeon recommended removing the whole breast. She chose less drastic treatment after a survivor she knew coached her through looking at other options.

"She was basically my champion. She helped me navigate the system," Brooks said. "She listened, she shared with me what she had been through," but didn't try to tell her what to do.

Brooks now tries to do the same. She has coached dozens of patients, including black women like herself who are more likely to be diagnosed at later stages and are more likely to die from the disease. A local hospital refers people to her.

As for Bernie Brann, the patient from upstate New York, she did not seek a lot of advice when she was first diagnosed. But word got around at Ithaca College Health Center, where the 69-year-old woman works two nights a week as a nurse's aide.

Doctors told her she could either have a mastectomy or just the lump removed, and at first, she thought she would do the latter. "But I had so many people saying, 'No, no, no, that's not the way to go.' Most people said, 'Have a mastectomy.' It was so radical. It just overwhelmed me. It was not something I wanted to do."

She credits her three children with offering support without telling her what to do. Her oldest son went with her to appointments, as did a close friend with nursing training. Ultimately, she changed her mind about what would be best for her, and had a mastectomy in late December.

"I didn't want to go through this again. My feeling was, get in there, get rid of it, get on with your life," she said.

"It's been quite a rollercoaster," she said. But she feels more confident now that she can make good decisions about her future care.

---

On the Net:

American Cancer Society: http://www.cancer.org

Personalized treatment decision tool: http://tinyurl.com/2uvyu6

American Society of Clinical Oncology patient site: http://www.plwc.org

National Cancer Institute: http://www.cancer.gov

Treatment options: http://www.nccn.org/patients

Association of Cancer Online Resources: http://www.acor.org

Breast cancer support groups:

http://www.y-me.org

http://www.komen.org

http://www.bcaction.org

http://www.stopbreastcancer.org

Labels: cancer, chemotherapy, coaches, lung cancer, radiation, support

Posted by Henry (Calem's Opa) :: 2:10 PM :: 0 people are more aware ---------------------------------------

Tuesday, April 17, 2007

Clues to the Cancer - St. Petersburg Times

Awareness about the Human Papilloma virus is still relatively new to the public. I found this article about David Hastings to be very interesting and informative. This article seemed like something worth sharing here. (Please note: I have notified Mr. Barry that I would like to share his article on this blog. However, at his request, this post may be removed.)

~oOo~
[Times photo: Martha Rial]
David Hastings nearly died last year from throat cancer. His wife Jo saved him by nagging him to see a doctor.

Clues to the cancer
David Hastings doesn't fit the throat cancer profile. So he looked for answers and was surprised by what he found.

By John Barry
St. Petersburg Times
Published April 17, 2007

During the grisly battle for his life, David Hastings played medical detective. He read everything he could find on what was trying to kill him. Nothing made sense. Hastings had throat cancer, mostly known for killing old people. Imagine an elderly soul addicted to cigarettes and alcohol for 40 years. There's a likely victim.

Hastings didn't fit. He was 58. He looked 48. He hadn't smoked since college, and he doesn't drink. His chief addiction is cycling. He rides his bike about 100 miles per week.

He'd never have guessed where he finally did fit in.

He did not have an old smoker's disease, after all. His throat had been attacked by a cancer-causing virus infamous for killing women. It was HPV, the human papilloma virus, that causes most cervical cancers. HPV is the virus at the center of a national argument over preventive vaccinations of young girls.

To his great surprise, Hastings discovered that this controversial women's vaccination plan aimed at ridding the world of HPV cancers may have started with the wrong gender.

One day, the answer might be found here. A thousand Tampa men are currently participating in the world's largest study of male HPV infections. The National Institutes of Health has awarded the H. Lee Moffitt Cancer Center in Tampa $10-million for the work. It involves 3,000 men worldwide, including the Tampa thousand, and may soon include their female partners. One preliminary finding is a male infection rate double that of women.

Hastings found other studies as well that have long linked HPV to anal and penile cancers. Gay men and men in impoverished countries are most afflicted. They were horror stories - cancers that required the most ghastly of surgical remedies.

By the end of his searches, Hastings had become an official HPV cancer statistic - one of 10,000 American men afflicted by any one of five types of HPV cancers each year. The male number is close to the annual number of HPV cervical cancers detected in women.

Doctors are seeing more and more cases like Hastings': young, nonsmoking men and women who are turning up with oral cancers they aren't supposed to have. There has been an 11 percent increase - after 50 years of constancy - even as smoking has declined. A Chicago conference is planned for June. The maker of the current vaccine for girls is seeking FDA approval to give it to boys, too. Some Johns Hopkins University patients are receiving a new experimental vaccine.

Hastings even found himself briefly inserted into the debate in Tallahassee over requiring vaccinations of schoolgirls. His message to the lawmakers: HPV kills men, too.

It almost killed him.

- - -

Hastings had shaved over a swelling on the left side of his neck in March 2006. "It felt muscular," he says, "almost as if I'd been working out." He ignored it. That was typical of his personal approach to all things medical. "I didn't even know what a primary care physician was."

He's a CPA. His tax office is next door to the Habana Cafe in Gulfport, run by his Cuban wife, Josefa. They've been married for 17 years. They have one of those marriages where the fun and fur fly simultaneously. "She promised me I'd never have to work in the restaurant when we started it 10 years ago," he says. "I've been there every night since the first night."

A month went by before he showed his wife the swelling. It was a Friday morning.

"God, you've got golf balls in there," she said.

Jo wanted his neck checked that day. Over his protests, she started calling doctors. The only one she could find late on a Friday was their neighbor, a plastic surgeon. He felt two swollen lymph nodes and arranged a Monday appointment for Hastings with a primary care doctor. That doctor referred him to a general surgeon.

The general surgeon said it might be cancer or might not be, but, regardless, they should come out. He scheduled surgery for that Thursday.

Hastings was finally paying attention. He wanted a second opinion. Jo thought he was trying to get out of the surgery. She called another doctor neighbor, this one an oncologist.

That doctor told Hastings he didn't fit the profile of a "cancer candidate." He thought Hastings might have caught cat-scratch fever from one of Jo's eight cats. Surgery was scrubbed; Hastings went on an antibiotic. But the oncologist also ordered a CT scan.

Then Jo tricked her husband. She asked him to take her mother to an ear, nose and throat specialist. After examining the mother-in-law, the specialist turned to Hastings: "I understand I need to look at you, too."

The doctor felt the neck. "That's not good." He took a foot-long needle out of a drawer. With the needle, he extracted fluid for biopsy. Then he looked over a report on the CT scan. It contained the word "necrosis." That means dead cells and usually indicates cancer. "I didn't want to read that," he told Hastings.

A week later, the doctor saw him again. "Your wife saved your life," the doctor said.

He diagnosed a deadly squamous cell carcinoma. He said Hastings would need a radical remedy that involves the removal of lymph nodes, jugular veins, nerves and muscle between the tip of the ear and the collar bone. It would leave him with a drooped shoulder. And afterward, Hastings would still need chemo and radiation.

His chances of survival after all the cutting, chemo and radiation would be 60 percent.

Hastings fainted.

- - -

He again went looking for options. He ended up at Moffitt, which gave him the first good news since he'd felt the lumps. It concluded he didn't need the surgery. It preferred simultaneous radiation and chemotherapy as a first step, saving Hastings from a crippled upper torso.

During 35 treatments in seven weeks and nausea and dehydration that nearly killed him, Hastings read up on HPV.

It's sexually transmitted. About two-thirds of the population are infected with it in young adulthood. But about 3 percent of women get a strain called HPV-16 that causes cervical cancer and kills about 3,700 women a year.

Last July, the FDA approved a HPV-16 vaccine called Gardasil for young girls. Almost immediately, legislatures, including Florida's, drafted laws to require the vaccinations for girls in public schools.

Almost immediately, parents and religious groups protested, fearful that the vaccinations might encourage sexual promiscuity and take medical choices away from parents.

Overlooked in the furor was the fact that men can get HPV-16 from having sex, too. Sexual encounters in their teens can come back to haunt them in their 50s. The virus usually lies latent until middle age. Then it can show up in anal and penile cancers or in oral cancers like Hastings'.

HPV vaccinations of schoolgirls are a fine thing, contends Brian Hill, founder of the Oral Cancer Foundation in California and a survivor of HPV cancer in his tonsils.

"But if they don't do boys it's solving only half the problem."

- - -

Studies at Moffitt are tending to confirm that. Early findings in one study are showing a 60 percent overall HPV infection rate among men, compared with less than 30 percent among women.

Anna Giuliano, Moffitt's lead HPV researcher, is seeking an additional grant in order to add female partners to her study of the 3,000 men. Then she should know if men are more commonly infected than women.

The ultimate goal, she says, is "one simple vaccine" for all.

Merck, the maker of Gardasil, has already submitted to the FDA its tests of the vaccine on boys ages 9 to 15. They're in the process of testing boys and men ages 16 to 23. Moffitt is participating in those trials. Gardasil is already given to boys in European Union countries, as well as Australia and New Zealand.

Hopkins is testing an HPV vaccine specifically for men who already have oral cancers. "It's designed to enhance the immune response to the HPV-16," Maura Gillison, the lead HPV cancer researcher at Hopkins, said by e-mail.

Hastings has tried to get into the trial. He did so by pressing Moffitt to send his cancer tissues to Hopkins for HPV-16 testing.

Last month the tests for HPV-16 came back positive, vindicating his medical detective work.

Some good news from Hopkins came as well: People like Hastings with HPV cancers have a higher survival rate than those with oral cancers from smoking.

Now Moffitt, which has sent other samples besides Hastings' to Hopkins, is testing a screening procedure of its own.

- - -

Hastings took his message to the Legislature's House Education Committee in early April. He flew to Tallahassee with Ed Homan, a Tampa representative who was sponsoring the schoolgirl vaccination bill. He told Hastings, "Tell them you're a man with HPV."

He had three minutes. Hastings is a guy who has trouble telling his name in three minutes. He rattled off his message as fast as he could. "I was told my testimony was emotional."

Then, with little discussion, the committee rejected the vaccination plan.

Hastings left the hearing shocked by his three-minute civics lesson.

"Unbelievable!" he sputtered. "Kids will die in Florida."

John Barry can be reached at (727) 892-2258 or jbarry@sptimes.com

Fast Facts: HPV- The human papilloma virus is one of the most common sexually transmitted viruses. More than half of all people will be exposed to any one of 80 HPV viruses.- The HPV-16 strain causes most cervical cancers, nearly 10,000 a year in the United States. It kills about 3,700 U.S. women annually.- HPV-16 has been linked to oral, penile and anal cancers in men. About 9,800 U.S. men are afflicted each year.

Labels: awareness, cancer, chemotherapy, human papilloma virus, throat cancer

Posted by Lynda :: 12:13 PM :: 1 people are more aware ---------------------------------------

Saturday, March 03, 2007

Look Good, Feel Better

When Laurianne found out she had cancer in 2005, she went to the American Cancer Society to find out more about wigs. This is just one of the services the American Cancer Society offers as a service to cancer patients. Fortunately, Laurianne took some pictures of her wig choices, so she is my model for this post.

The American Cancer Society administers a program, in partnership with the National Cosmetology Association, called Look Good, Feel Better which provides wigs to women who have lost their hair to cancer. There is also a program for Men called Look Good, Feel Better for Men as well as a program for teens, and the 2BMe website.

If you know someone who doesn't have web access, you can call the program at 1-800-395-LOOK or contact the American Cancer Society at 1-800-ACS-2345. You can also visit the American Cancer Society's Look Good, Feel Better web page.

By calling 1-800-395-LOOK (1-800-395-5665)you can also request self-help materials. And because you don't need to struggle with cancer alone, some areas offer group programs. Here is some information on the group programs, taken from the American Cancer Society's Look Good, Feel Better web page:

Volunteer beauty professionals lead small groups, usually consisting of 6 to 10 women, through practical, hands-on experience. Women learn about makeup techniques, skincare, nail care, and options related to hair loss such as wigs, turbans, and scarves. Each group program participant receives a free kit of cosmetics for use during and after the workshop.

Laurianne was lucky. She didn't actually end up losing her hair. But, most people do experience hair loss with chemo. With programs like this, someone going through cancer can feel less self-conscious and better about themselves. And sometimes that is half the battle.

Labels: awareness, bald, cancer, chemotherapy, Laurianne, organizations

Posted by Lynda (Laurianne's Sister) :: 6:49 AM :: 0 people are more aware ---------------------------------------

Monday, February 19, 2007

St. Baldrick's

I have always wondered what it would be like to be bald. I imagine a warm breeze over a bald head, or rolling down the windows of my car and not having to worry about getting rid of tangles later. Unlike Laurianne, who loved her hair, I have never been as attached to my hair as it is to me. I keep saying that one day I will definately try it.

Yesterday, my mom told me that some friends of hers read this website, and that they participate in an organization called St. Baldrick's Foundation. (Hi, friends of my mom!) This organization raises money for kids with cancer. In fact, their mission statement is:

The mission of the St. Baldrick's Foundation is to raise awareness and funds to cure kids' cancer by supporting cancer research and fellowships.

In Indianapolis, they are having an event for St. Baldrick's towards the middle of March. I am hoping to get out to one of these events and see what it is all about. I am not going to shave my head this year though. I still want to grow my hair out for Locks of Love. But, to help raise funds for cancer, I would be willing to shave my head.

Just in time for summer, too!

Labels: awareness, bald, cancer, chemotherapy, childhood cancer, Laurianne, organizations

Posted by Lynda (Laurianne's Sister) :: 7:20 AM :: 0 people are more aware ---------------------------------------