Tag Archives: supportive oncology

Beyond Multidisciplinary—Getting the Patients’ Perspectives

From the National Comprehensive Cancer Network annual meeting, Hollywood, Fla.

Most continuing medical education meetings feature a doctor presenting his or her expertise to a room of other doctors. And sometimes it get multidisciplinary with a panel of physicians each contributing their unique perspectives on a given clinical topic.

But perhaps physicians will learn even more if patients are invited to share their views as well at these meetings. That happened here. A cancer survivorship panel included Sam Donaldson, who announced his retirement from ABC News last month and Elizabeth Edwards, an attorney and wife of former Sen. John Edwards.

photo by Damian McNamara

photo by Damian McNamara

Both Mr. Donaldson, who was diagnosed with a melanoma in 1995, and Mrs. Edwards, who was diagnosed with breast cancer in 2004 and had a recurrence in 2007, gave their unique take on the challenges of survival.

“So those of us in ‘the club’ know the problems continue” after acute cancer treatment ends, Mr. Donaldson said. It is not easy to detach from a primary oncologist after treatment, for example, and there is always the fear of recurrence. He explained more impacts on his personal life in an interview shortly after his diagnosis.

“I am worried about everything,” Ms. Edwards said. For example, she felt a rough spot on the back of her neck and searched Google for skin cancer images. As nonchalantly as possible, she also asked her daughter to take a look. “I am not a health professional and neither is my daughter. She said, ‘I don’t know what skin cancer looks like, but I do, however, know what a curling iron burn looks like.’ ” Ms. Edwards said. “Even the most benign thing will scare you to death if you don’t know what it is.”

Doctors treating cancer patients should provide as much information as possible when talking to patients like herself, she said. “It makes my life more complicated because I have no roadmap. My tumor markers are down now that I am on a new medicine. But I don’t know what my prognoisis is. I have no idea whether we are talking about 2 months, 2 years, or 12 years.”

—Damian McNamara

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Filed under Dermatology, Oncology

SABC: What’s Up With the Badge Nazis?

San Antonio Breast Cancer Symposium

Image courtesy of Flickr user Eddie~S' under creative commons license

Image courtesy of Flickr user Eddie~S' under creative commons license

I—and the other attendees of SABC—have been pestered over and over again by the badge nazis here in the convention center.  These are individuals employed to keep people without badges from the presentations, the posters, and the press room.  They are more polite than the Soup Nazi of Seinfeld fame but are just as strict— “no breast cancer research for you!”

It’s obvious to me why someone needs the right badge to get into the press room; it keeps the PR flacks at bay.  For that, I am very thankful.  Still they’ve gone a little overboard in this press room, by keeping physicians out.  This has been particularly problematic. I’ve scheduled interviews and arranged for the physicians to look for me in the press room—and they can’t get in!   I’ve taken to sitting by the door, so that I can see when physicians that I am interviewing arrive.

Why the main badge requirment for the main sessions and the posters?  Because commerce is king–financial folks try to get into oncology meetings to get a jump on data that could affect share prices.  In addition, the organizers charge a pretty steep fee to attend this meeting and don’t want to let just anyone waltz in without paying.  The same is probably true for the poster sessions as well, but I think there’s another factor at play.  There is a phenomenal appetizer spread and open bar at the evening poster sessions.  Enough said.

—Kerri Wachter

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Filed under Family Medicine, Internal Medicine, Oncology

Supportive Oncology: Listening is Free

From the Fourth Annual Chicago Supportive Oncology Conference, Chicago, Ill.:

 

I’ve been covering oncology for a few years now, and usually go to the big, high-powered meetings like ASH and ASCO. This time, I’m covering supportive oncology. Unlike the “three ring circuses” I’m used to, this meeting is being held in one, albeit large, room. The audience is predominantly female, for the most part RNs. Roughly 30% of the attendees are physicians.

 

Everyone is here to learn the best ways of caring for people with cancer. The focus is not so much on treating the disease, but on treating the side effects of treatment: What to do about mucositis, constipation, fatigue, dyspnea, nausea and vomiting. How to reduce or prevent the cardiotoxicity from breast cancer therapy, or preserve bone health during androgen deprivation therapy for prostate cancer. How best to sustain patients mentally and spiritually. How to help patients and their families cope with grieving and loss.

 

What nobody talks about, at least formally, is the cost of providing such care. Right now, there are 47 million Americans with no medical insurance. And an even greater number with no dental insurance. Yet, good oral health is essential for cancer patients.

 

I spoke with an RN who cares for patients in an inner-city hospital in Milwaukee. He said that most of his patients are indigent. They present when their cancer is at an advanced stage because they can’t afford to go to the doctor. Routine dental care for these individuals, many of whom are on Medicaid, consists of pulling their teeth out. When the teeth are all out, they get ill-fitting dentures, which cause another host of problems.

 

He said he likes to come to this meeting because he wants to know what’s out there for his patients, but he admits he is frustrated because so little of what he learns can actually be applied where he works. Very little state-of-the-art cancer care actually trickles down to his patients because they can’t pay for it. 

 

What he is able to provide is an ear for listening. Listening may be one of the most important supportive oncology care strategies. It has no side effects. And it’s free.

 

This is what he told me: “I’m there for them in the middle of the night, when they can’t sleep. This is when they open up to me. They talk about their worries, their anxieties. They want to know what will happen to them as they start on their final descent to death.  Will their pain be well managed?  Will they be treated with respect?  Will they be able to die with dignity?  Even though I can’t wave a magic wand and make their illness go away, or give them money to pay for the latest drugs to relieve their nausea and vomiting or get appropriate dental care, I can listen. It’s a small thing really, but I know it helps my patients.”

 

The reality is, if you get cancer in the U.S., you better be close to a center that can provide good and compassionate care and be rich enough to afford it.

 

And lucky enough to have a nurse who will listen to you in the middle of the night.

 

–Fran Lowry

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Filed under Oncology