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The Checkup: Talking Back To Your Doctor

Welcome to the The Checkup. Our sixth episode “Talking Back to Your Doctor,” opens with a question: Why do so many of us find it so hellishly hard to speak freely with our doctors? What is it about a white coat that makes even normally assertive people clam up?

(To listen to The Checkup now, click on the arrow above; to download and listen later, press Download; and to get it through iTunes click here.)

We begin with the dramatic story of Alicair Peltonen, an administrative assistant diagnosed with a rare cancer who had to have a chunk the size of a baseball removed from her thigh. Throughout her medical saga, she found that she often had urgent questions echoing in her mind, but felt too inhibited to voice them. She set out to find out why. The Checkup

We speak with Dr. Jo Shapiro of Brigham and Women’s Hospital in Boston about what she calls “Conversation Deficit Disorder” among doctors. And we hear from Dr. Annie Brewster, who has special insight into doctor-patient communication because she’s both a practicing doctor and a multiple sclerosis patient who decided not to follow her doctor’s recommendations about taking a particular medication.

Each episode of the Checkup features a different topic—previous topics included college mental health, sex problems, the Insanity workout and vaccine issues.

This is the closing episode of our first season of The Checkup. Please tell us what you liked and disliked and what you want more of. Like CommonHealth on Facebook or drop a note to podcasts@slate.com.

We’ll keep you posted here on all our plans for future podcasts.

Are Young Women With Cancer In One Breast Needlessly Having The Other Removed?

Are young patients with cancer in one breast, driven by unfounded fears and anxiety, having the other breast removed unnecessarily?

That’s the troubling question implicit in this new survey of women 40 or younger who chose to undergo double mastectomies even though their cancer was only in one breast. The procedure, called contralateral prophylactic mastectomy (CPM), has increased “dramatically” in recent years, particularly among younger women, researchers report.

But evidence suggests that the removal of a healthy breast in a woman with cancer in only one breast does not improve survival rates.

TipsTimes/flickr

TipsTimes/flickr

Still, researchers from the Dana-Farber Cancer Institute and colleagues report that more and more young women with breast cancer are electing to remove their healthy breast to “avoid recurrence and improve survival.”

Specifically, the study found that among 123 women surveyed, 98 percent said they chose CPM to avoid getting cancer in the other breast and 94 percent said they did it to improve survival. (Also of note, 95 percent said they did it for a more nebulous but emotionally potent reason: “peace of mind.”)

If you’ve had breast cancer, or know anyone who has, it’s easy to see why such a subjective, non-data point like “peace of mind” might trump a more rational, just-the-facts approach to treatment. But this paper, published in the Annals of Internal Medicine, points to what it calls the “cognitive dissonance” between what women know to be the facts and what they actually do.

“Many women overestimate their risk for actual cancer in the unaffected breast,” the paper says, concluding that: “Interventions aimed at improving risk communication in an effort to promote evidence-based decision making is warranted.” Continue reading

Study: Despite Risk, OB’s Urge Ovary Removal With Hysterectomy

A new study by Massachusetts doctors underscores a common phenomenon in medicine: patients often get treatment advice that contradicts what may actually be best for them.

In this case, researchers found that “many OB/GYNs continue to advise pre-menopausal women to have their ovaries electively removed along with hysterectomies, despite indications that the benefits of retaining the ovaries may exceed risks of doing so, including ovarian cancer.”

doctor and patientThe study, co-authored by Drs. Oz Harmanli of Baystate Medical Center and Tufts University School of Medicine with Julia Shinnick, Keisha Jones, and Peter St. Marie, is summed up in the news release:

…one-third of OB/GYNs surveyed continue to recommend elective removal of the ovaries for hysterectomy candidates younger than 51 years old, and the majority recommend the procedure for hysterectomy candidates 51 to 65 years old. The procedure is seen as an effective way to head off ovarian cancer; however, the benefits of retaining the ovaries, mainly in the form of continued estrogen production and its effects on the body, may supersede any risks. The American Congress of Obstetricians and Gynecologists (ACOG) has made recommendations opposing elective ovary removal before menopause.

“We believe many women are electively having their ovaries removed based on recommendations from their doctors that may not be consistent with best practice,” said Dr. Harmanli, chief of Urogynecology and Pelvic Surgery at Baystate Medical Center. “Retaining the ovaries before menopause can confer cardiovascular, sexual and other benefits. Hormone therapy is not risk free and can’t always replace what’s lost with oophorectomy (ovary removal), and in this survey we see solid proof that the best advice is not always being given.”

Some researchers advise conservation of ovaries at the time of hysterectomy, based on some evidence that ovaries continue to help decrease mortality up to age 65. Another finding of this survey was that over 90% of OB/GYNs do not follow this advice. Continue reading

Consumer Reports Rates Surgery; Hospitals Push Back

We, patients, need user-friendly ways to answer this question: Where’s the best place to go for a knee replacement, or cardiac care, or to deliver a baby?

It is virtually impossible to find an answer even though hospitals have reams of information about how often patients recover smoothly and how often they suffer infections, complications or even die after surgery.

A few groups are stepping into the void. The latest issue of Consumer Reports rates hospitals in Massachusetts, and across the country, on surgery. The “overall” scores surprised me.

From Consumer Reports' “Your Safer-Surgery Survival Guide”

From Consumer Reports’ “Your Safer-Surgery Survival Guide”

Carney Hospital at the top is hardly a magnet for patients needing surgery in the Boston area. Some hospitals that are have the lowest overall ratings.

I called Mass General, where the hospital’s senior VP for quality and safety, Dr. Elizabeth Mort, praised the goal of giving patients more information about the quality of care. But she says Consumer Reports’ methods have so many flaws that these ratings “do the patient a disservice.”

The ratings, Mort says, don’t accurately take into account:

– how sick the patient was when he or she came in for surgery or the severity of their disease
– how many other conditions the patient may have
– how many complications actually occurred

The ratings are also misleading, Mort says, because they pool different types of procedures in single category. For example, they pool many prostate procedures, even though some hospitals perform very specialized and difficult surgeries and some hospitals only perform the most basic operations.

Consumer Reports’ ratings are based on two factors: how often patients died in the hospital following surgery and how often they had an extended stay, which is often a sign there were complications. Researchers combed through Medicare billing records. Consumer Reports doesn’t have medical reports that would allow it to adjust for the issues Mort mentioned above.

“That’s a little bit of the point,” says Doris Peter, with Consumer Reports Health Ratings Center, “that clinical data is not widely available to the public and we can’t base our ratings on clinical data if it’s not made available.”

Dr. John Santa, medical director of Consumer Reports Health, says in the magazine that while the ratings aren’t perfect, “we think they’re an important step in giving patients information they need to make an informed choice.” And, he adds, “we hope that by highlighting performance differences, we can motivate hospitals to improve.”

The Massachusetts Hospital Association (MHA) says it supports “greater transparency regarding quality and financial data to better inform the public,” but that “Consumer Reports’(CR) continued efforts to rate US hospitals result in greater confusion rather than clarity with an oversimplification of this extremely complex and important subject.”
Continue reading

100 Days Later, Marathon Bombing Survivor Leaves Rehab

BOSTON — After 16 surgeries that included 49 procedures, Boston Marathon bombing survivor Marc Fucarile, of Stoneham, is going home.

Police rushed the 34-year-old to Massachusetts General Hospital 100 days ago. His skin still smoldered. Blood gushed out of both legs.

“His injuries include amputation of his right leg above his knee, multiple fractures of his left leg and foot, burn injuries to his legs, trunk, back and pelvis,” said Dr. Jeffrey Schneider, one of Fucarile’s physicians after he moved to Spaulding Rehabilitation Hospital. The list also includes a fractured spine, ruptured eardrums and multiple shrapnel wounds to Fucarile’s extremities and torso.

Marathon bombing victim Marc Fucarile speaks before departing Spaulding Rehab Hospital Wednesday. (Martha Bebinger/WBUR)

Marathon bombing victim Marc Fucarile speaks before departing Spaulding Rehab Hospital Wednesday. (Martha Bebinger/WBUR)

“Wow, I forgot how much it really was,” Fucarile said Wednesday, shaking his head.

When he arrived at Spaulding, Fucarile couldn’t even sit up in bed for any length of time. On Wednesday, he hobbled on crutches into the hospital lobby. Spaulding staff and Fucarile’s family members applauded. Fucarile smiled, but sobered as he recounted his ordeal.

“It’s just been tough, real tough, especially when my son’s home sick, Jen’s not sleeping,” he said. “At times I just want to check out.”

Fucarile glanced at his 5-year-old son Gavin and his fiancée Jen Regan. Their support, he said — along with all the cards taped to his wall, donations and hand-knit blankets he’s been sleeping under — have helped him through many nights of pain and motivated him to stretch new skin and shriveled muscles.

“I know that I have the rest of my life, thanks to the people who were there that day who helped me and saved me,” he said. “I’d go through 100 more procedures as long as I can be there to go home with him.”

Gavin smiled and giggled through most of Fucarile’s press conference. Regan, Fucarile’s longtime companion, joked that she’s been getting the house ready for his return. “We got a frontload dryer and washer so he can do the laundry in his wheelchair.” Continue reading

Questioning Ovarian Cancer: Why Such A High Fatality Rate?

Photo Credit: Wikimedia Commons

Photo Credit: Wikimedia Commons

There is tragic news coming from the entertainment world today.  Pierce Brosnan announced that his daughter, Charlotte, age 41, died of ovarian cancer three days ago.  This is the same illness that took her mother’s life in 1991 when she, like her daughter, was in her early 40s.

Angelina Jolie – who underwent a preventative double mastectomy earlier this year —  lost her mother to ovarian cancer in 2007.

According to the CDC, ovarian cancer is the second most common gynecological cancer, after uterine cancer, and it’s the cause of more deaths than any other gynecological cancer.

The numbers look like this: ovarian cancer kills 15,000 women and approximately 22,000 new cases are diagnosed annually in the US.  Approximately 90% of cases occur in women over 40 and the majority of diagnoses are given to women aged 60 years or older.   According the the American Cancer society, the survival rate for patients who live for five years after they are diagnosed with ovarian cancer is 44%.

Unlike breast or cervical cancer, there is no reliable screening measure for ovarian cancer.  Once it is detected, the first line treatment option is surgery.

Earlier this year, The New York Times reported on a study that suggested the high fatality rate amongst ovarian cancer patients is attributable to widespread deficiencies in the typical treatment most women receive. The article reports that only a third of women with ovarian cancer receive “best practice” treatment, which the study says, is a complicated and intensive operation performed by a highly specialized surgeon.

Here is an excerpt from the article:

Cancer specialists around the country say the main reason for the poor care is that most women are treated by doctors and hospitals that see few cases of the disease and lack expertise in the complex surgery and chemotherapy that can prolong life.

If we could just make sure that women get to the people who are trained to take care of them, the impact would be much greater than that of any new chemotherapy drug or biological agent,” Continue reading

Study: Common Surgery For Prolapse Fails Nearly 1 Out of 3 Women

We’ve written a lot about the scary complications associated with vaginal mesh, synthetic devices that are surgically implanted to treat women suffering from prolapse. This condition, which afflicts millions of women after childbirth or as they age, occurs when stretched or weakened pelvic-area tissues give way, allowing the bladder or other organs to sag or bulge into the vagina.

Now, adding to the mounting data on the potential risks of prolapse surgery in general, a new study in the Journal of the American Medical Association finds that a common surgical treatment for prolapse — one considered the “gold standard” involving abdominal surgery — fails nearly 1 out of 3 women.

So why does prolapse surgery matter? As the JAMA study authors note, nearly 1 in 4 woman have at least one pelvic floor condition and “more than 225,000 surgeries are performed annually in the United States for pelvic organ prolapse.” So, any woman considering this surgery should be aware of the “long-term risks of mesh or suture erosion.” Continue reading

Angelina Jolie’s Double Mastectomy: How Times Have Changed

(Alastair Grant/AP)

(Alastair Grant/AP)

About five years ago a close friend of mine had a prophylactic double mastectomy to lower her extremely high genetic risk of developing breast cancer, which had killed her mother. She begged me to keep the operations a secret: she didn’t want to worry her two young daughters.

Today, in a New York Times opinion piece that is about as out-there and open as it gets, 37-year-old actress and activist Angelina Jolie, who carries the BRCA1 gene which greatly elevates her risk of breast and ovarian cancer, writes that she recently had her breasts surgically removed to lower that risk.

On April 27, I finished the three months of medical procedures that the mastectomies involved. During that time I have been able to keep this private and to carry on with my work.

But I am writing about it now because I hope that other women can benefit from my experience. Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.

My own process began on Feb. 2 with a procedure known as a “nipple delay,” which rules out disease in the breast ducts behind the nipple and draws extra blood flow to the area. This causes some pain and a lot of bruising, but it increases the chance of saving the nipple.

Two weeks later I had the major surgery, where the breast tissue is removed and temporary fillers are put in place. The operation can take eight hours. You wake up with drain tubes and expanders in your breasts. It does feel like a scene out of a science-fiction film. But days after surgery you can be back to a normal life.

Nine weeks later, the final surgery is completed with the reconstruction of the breasts with an implant. There have been many advances in this procedure in the last few years, and the results can be beautiful.

I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made. My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don’t need to fear they will lose me to breast cancer.

Jolie’s mother died of cancer at age 56 and Jolie writes that she didn’t want to put her own kids through that kind of pain if possible. That this highly public figure offers such intimate details about her body and her breasts may be a sign that the taboos around cancer are dwindling. (“On a personal note,” Jolie writes, “I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity.”)

Sharon Bober, a clinical psychologist and director of the Dana-Farber Cancer Institute’s Sexual Health Program, who counsels many women who have had similar surgeries, said in an email that Jolie’s honesty is truly refreshing:

Wow!

One thing that strikes me is how times have changed – not that many years ago BRCA carriers would be worried about insurance being dropped, stigma, judgement, (“you are removing healthy breasts?? What are you crazy??”) and now this too is out of the closet. Continue reading

Globe: Whopping $7M Settlement In Gender Bias Suit Against Hospital, Surgery Chief

Part of Beth Israel Deaconess Medical Center

Part of Beth Israel Deaconess Medical Center

The Boston Globe’s Liz Kowalczyk reports here:

In a striking settlement of a high-profile case, a Harvard doctor who said she endured years of sexist treatment at Beth Israel Deaconess Medical Center will collect $7 million — and will have the hospital’s pain clinic named in her ­honor.

Employment lawyers said the hospital’s settlement with Dr. Carol Warfield, its former chief of anesthesia, appears to be one of the largest for a gender discrimination case in Massachusetts. Ilene Sunshine, a lawyer who represents defendants in bias suits, said it seems “enormous,’’ though she pointed out that it is hard to compare because settlements usually remain confidential.

The agreement — in which the hospital and other defendants did not admit doing anything wrong — closes an embar­rassing stretch in the ­Harvard teaching hospital’s ­illustrious history.

Warfield, who became chief of anesthesia in 2000, said Dr. Josef Fischer, former surgery chief, discriminated against her because she is a woman, openly ignoring her in meetings and lobbying for her ­removal from her job. When she complained to Paul Levy, then chief executive, she ­alleged, both men retaliated against her and forced her out.

Readers, is this an anomaly or does it reflect significant cultural change? Surgeons have such a reputation as the arrogant cowboys of any hospital staff; is that truly changing? Does this suit send the message that it must? Read the full Globe story here.

Beds, Socks, Time-Outs: Such Simple Ways To Avoid Hospital Harm

Big hospitals can seem like impossibly complex organisms, but how simple some of these patient-safety improvements are! From Beth Israel Deaconess Medical Center:

BOSTON – Reducing preventable harm in hospitals often starts with small, low-tech steps: brushing the teeth of patients on ventilators; using low-rise beds and socks with safety treads on both sides; completing a surgical time out before mounting a blade on a scalpel.

Those small steps have yielded big results at Beth Israel Deaconess Medical Center – from a 90 percent reduction in ventilator-associated pneumonia since 2006, to progress in reducing patient falls with injury and in helping to avoid wrong site surgeries. They are some of the key lessons learned and implemented after the hospital declared the then “audacious goal” to eliminate preventable patient harm by 2012.

Those safety steps may seem obvious now, but of course, hindsight is always easy. Yes, “after the fact, it seems obvious,” said Dr. Kenneth Sands, the hospital’s senior vice president for health care quality, but “you need to have that ‘Aha’ moment.” Consider luggage, he said; he spent years lugging around bags because no one had thought to put wheels on them. “The good news is that some of these things are very simple and not technological,” he said, “but they are sometimes only obvious in retrospect.”

More from the hospital:

BIDMC has posted a video on its public website that chronicle three stories that represent how the issue is being addressed:

Preventing ventilator-associated pneumonia
Ventilator-associated pneumonia is a problem that can affect between 10 to 20 percent of intensive care patients who need assistance breathing. Bacteria can collect in the breathing tube and work its way into a patient’s lung and contracting VAP can double a patient’s risk of dying. Continue reading