Prostate cancer decision-making on treatment: Would you cut off your left foot?

Paul VanDevelder, a middle-aged journalist and father, learned five years ago that his PSA (prostate specific antigen) test showed a sudden spike in his PSA level, making him feel panicked. A doctor friend calmed him and had him learn a lot more. Paul learned that for 88% of men with elevated PSAs, the results were a false positive.

The prominent Dartmouth Medical School researcher, Dr. H. Gilbert Welch, explains the odd truth: "The presumption often is that anyone who has had cancer detected has survived because of the test, but that's not true. In fact, and I hate to say this, in screen-detected breast and prostate cancer, survivors are more likely to have been overdiagnosed than actually helped by the test." Indeed, the U.S. Preventive Services Task Force formally recommended in October 2011 that doctors stop using the PSA blood test to screen healthy men for prostate cancer.

Paul will get retested in a year, and will think carefully before any prostate surgery. He explains his decision this way to his urologist: "If your doctor told you that an asymptomatic, non-life-threatening tumor was growing on the instep of your left foot, would you cut your foot off?"

Advice to men with elevated PSA levels: Think carefully before deciding on prostate surgery.

Read about another journalist's decision on prostate cancer. Thanks to Paul for sharing his story in today's Los Angeles Times, where the full article can be found.

When you buy a car: Inappropriate surgery

Here's an idea that should both empower consumers and nudge costs down.

When you buy a car, critical information for this major purchase decision is immediately available, and clearly and prominently displayed on key features of the product, e.g., the miles per gallon. The decision of whether to have surgery is just as important, but information as clear and objective as that is usually absent.

The National Priorities Partnership is a broad group of experts, convened by the National Quality Forum, who have agreed that certain operations are often unwarranted.

Patients who are considering a coronary artery bypass graft (CABG), hysterectomy, knee/hip replacement, prostatectomy, percutaneous transluminal coronary angioplasty (PTCA), or spinal surgery should carefully consider beforehand whether the surgery is appropriate for them. To enable them to do so, patient advocates should find out and tell them the:

Survival rate;

Identification and frequency of the most common adverse effect;

Fraction of patients who need the operation to be performed again;

Best alternative to surgery; and

Cost to be billed by the surgeon and hospital.


I wish I had this information when I considered surgery. A friend's father also would probably have wanted to know it, as it might have saved him from an ineffective operation that left him incontinent. When consumers learn this information, many will probably consider alternatives to surgery, which may well be less expensive.

Half the rate in the U.S.: Mammograms and physicians' learning curve

The recent change in recommended mammography screening stems from a concern that the huge number of false positive readings led too many women to get unnecessary surgery, and to feel great needless anxiety.

Doctors who read a lot of mammograms are far more accurate than those who don't. To be a mammographer, the United Kingdom requires their radiologists to read ten times more mammograms than the U.S. does. That explains why the rate of false positives (when they say there IS cancer, when there really isn’t) in the U.K. is only half the rate in the U.S. A study in the Journal of the National Cancer Institute by Dr. Rebecca Smith-Bindman and others of mammograms in the U.S. confirms a similar pattern. In the largest study of its kind, they found that radiologists who read 2,500 or more mammograms each year have a false positive rate half that of radiologists who read 480 - 750 per year. And the radiologists who read the most mammograms are just as likely to detect breast cancer when it exists (in other words, their false negative rates are just as good as those of their less experienced colleagues).

Read another story about a mammogram.

Advice to women: Before your next mammogram, find a doctor who does more than 2,500 a year.

With significant potential financial gain: Unnecessary cardiac surgery

Father John Corapi went to Dr. M. for a diagnosis, and the doctor recommended surgery. Father Corapi then got second, third, fourth and fifth opinions, all of which disagreed with Dr. M.'s diagnosis and recommendation for cardiac surgery. He was so struck by these additional opinions that he went to the FBI.

The FBI performed a three-month investigation, interviewing medical staff at the local medical center in California, other patients of Dr. M., some of his colleagues, Dr. Gerald Rogan, and outside cardiologists as far away as the Cleveland Clinic. The FBI produced a 67-page affidavit that led to a search warrant authorizing an FBI raid on Dr. M.'s office. The affidavit contained a description of Dr. M.'s interaction with patients: the doctor bullied patients, and scared them. He would consistently tell patients, many of whom had ambiguous symptoms and no history of coronary disease, that he needed to perform an angiogram to determine whether the patient required invasive treatment. (An angiogram is a diagnostic test that takes X-ray pictures of the heart arteries, highlighted by an injected dye, via a soft catheter tube that the surgeon threads into the heart from an incision in the patient's groin. )

If the angiogram failed to document treatable disease, or as was frequently the case with Dr. M., was unreadable, he would perform an intravascular ultrasound, which at the time was new, and unfamiliar to many cardiologists. By improperly setting the gain on the ultrasound too high, Dr. M. guaranteed the appearance but not the reality of significant arterial blockages. Dr. M. would then lean over the supine patient and tell him in dire tones that without immediate bypass surgery, he would die. In such a stressful situation, few patients were sufficiently confident, rational, or sophisticated to ask for a second opinion. For the few who did, Dr. M. typically referred the patient to another doctor in his practice, who would confirm the diagnosis, relying on Dr. M.'s recommendation, and perform the surgery.

The California Medical Board sought a restraining order against the two doctors, finding that:

"Both have fraudulently misrepresented the findings of tests to induce and/or scare patients into having unnecessary surgeries or interventions. At best, this can be viewed as incompetent and/or grossly negligent as well as dishonest and corrupt. [They] misled, lied to or attempted to frighten patients into consenting to invasive coronary surgical procedures, at significant risk to the patient and with significant potential financial gain."

Advice: Work to reform the payment system that rewards unscrupulous doctors for unnecessary and dangerous surgery.

Read another story about unnecessary bypass surgery.

Thanks to Drs. Gerald Rogan, Frank Sebat and Ian Grady for the source, Disaster Analysis Redding Medical Center Congressional Report, June 1, 2008, and to Helen Haskell.

The hospital's lab had mixed up her test: An unnecessary mastectomy and death

Last spring, doctors at a Long Island hospital gave a patient the news she had feared: cancer had been detected in her left breast.

She was only in her 30s, but she decided to act swiftly because breast cancer ran in her family. On May 25, she had a double mastectomy. The next day, she died from complications in the surgery.

As it turned out, she did not have cancer. According to the state Department of Health, the pathology report from the woman's surgery had found no tumors in her breasts. The hospital's lab had mixed up her test with another woman's.

Since that time, the hospital has taken corrective action, which has been deemed proper by the Department of Health.

Advice to surgery patients: Read the test results yourself and ensure the test results show your name and date of birth.

Browse for similar stories in our index at the very bottom of this page, or read another cancer misdiagnosis story.

Thanks to Cara Buckley for the source story in today's New York Times.

There was nothing wrong with me: Unnecessary triple bypass surgery

Ron Spurgeon's health began to unravel when he hurt his shoulder doing yard work. He eventually wound up at a hospital in northern California, where a cardiologist told him he had a life-threatening heart condition. Four days later, he had triple bypass surgery.

Restrictions on heavy lifting as a consequence of the incision in his breastbone led the robust 56-year-old to give up his job maintaining machinery at lumber mills.

In 2003, two years after his operation, Ron learned that Tenet Healthcare, the hospital's owner, had paid $54 million to settle U.S. government allegations that it billed Medicare for unnecessary heart procedures. The next year, Ron and 344 others sued the hospital and eight cardiologists and surgeons for performing unnecessary procedures. The defendants ultimately paid $442 million to settle the suit, and Tenet says safeguards are now in place. Outside experts who reviewed patient charts determined that Ron was among the many patients who hadn't needed their procedures.

"There was nothing wrong with me," he says. "Those guys violated me. They took away my trust in doctors."

Advice: Ask your doctor beforehand what the medical research says is the likely result of your surgery.


Read another unnecessary surgery story, or read Consumer Reports' source story.

Thanks, Helen Haskell.

I never needed it in the first place: Unnecessary surgery - C section

When Barbara Stratton of Baltimore, Maryland, looks back at the birth of her son, Charlie, now 7, she’s angry — angry she had a surgery she believes she didn’t need. Babies delivered by C-section are at higher risk for complications, including breathing problems. Barbara said her obstetrician induced labor a week before her due date because she feared the baby would be too large to deliver if they waited for her to go into labor spontaneously. But even after being induced, her labor still didn’t progress, and she ended up with a Caesarean section. Her baby weighed 8 pounds, 7 ounces — far smaller than the obstetrician had predicted.

"I never needed the C-section in the first place," said Barbara.

The U.S. government and many obstetrical experts are working hard to reduce the number of women having C-sections. In 2004, 29% of babies in the U.S. were born by C-section, an increase of more than 40% since 1996. C-sections involve risks to the mother, including infections, bleeding, and pain. Babies born via C-sections have more breathing problems right after birth, according to the Office on Women's Health at the U.S. Department of Health and Human Services. Many experts think as many as half of all C-sections are unnecessary, the women’s health office said.

Barbara said that because of surgical complications she was in pain every day for a year and a half after her son was born. She became depressed.

"I was in pain every time I rolled over, every time I got out of bed, every time I got out of a chair," Barbara said. "It affected the quality of my mothering. I had trouble bonding with my son."

After her own disappointing birth experience, Barbara became a doula - a birth assistant who can advocate for a woman in labor.

Advice to pregnant women: Don’t get induced unless medically necessary. Studies of first-time moms show that 44% of those who are induced end up with a C-section but that only 8% of those who go into labor spontaneously end up with a C-section. Doctors say many times, inducing women way before the cervix is ready can lead to unproductive labor, which then necessitates a C-section.

Read a sextuplet story, or read Elizabeth Cohen’s source story.

They’ve taken their grief and turned it into something powerful: A surgical error story

He was an only child, healthy, strong, and at age 22, planned on being a pediatric nurse.

 "Michael passed out," Michael's mother Patty Skolnik said. "And he woke up in the dining room." 

Michael's parents took him to the emergency room as a precaution. An X-ray of his head showed a three millimeter dot on his brain. It was a cyst. Patty sought out expert opinion from a neurosurgeon. She said there was no time for a second opinion.

 He kept saying 'die.' You're so lucky he didn't die. We have to do this right away," Patty said. "And it was like there was no choice. It was like a train wreck happening." Patty said a three hour surgery turned into six hours, and when it was over, the doctor came out and said he never found the cyst.

Months passed and Michael was moved to Craig Hospital where the family learned the realistic prognosis.

 "He is 50% blind in both eyes to the left," Patty said. "He has no short term memory. He has severe seizure disorder, and he's psychotic." What had happened to their son? 

"Everything was primarily done from the deep brain operation. That's what caused all of this to begin with," Patty said. Michael developed multi-organ failure, then later suffered a seizure, developed pneumonia, and almost three years after the operation, passed away.

"It never should've happened. It was an unnecessary surgery," Patty said. 

The Skolniks have filed a complaint with the State Board of Medical Examiners, and the case is in review.

Unknown to the Skolnicks, the surgeon had two pending malpractice cases at the time. Michael’s parents are pressing for legislation in Colorado that would make such information publicly available.

The Skolniks suffered an incredible loss, but they've taken their grief and turned it into something powerful.

Advice to patients facing surgery: Check your surgeon's credentials beforehand.

See the short, powerful videotape of the CBS news segment or its transcript, or read another surgical error story.

How He Saved his Manhood: Unnecessary surgery

When a scan showed a lump in his scrotum, Nigel Summerley was told it was probably cancer and he'd have to lose a testicle. He describes how he took charge of his treatment - and kept his tackle intact.

Shock Number One came when I went for the ultrasound scan. Four weeks before that, I'd gone to my GP because I had a vague discomfort in the area of my right testicle. She'd examined it and sent me off to my local hospital to arrange a scan. The scan operator reported a mass 7 millimeters across [about a third of an inch].

Things moved quickly after that. In less than 20 days I would be in the operating room.

Shock Number Two came six days after that scan, when I went for an appointment at the hospital's urology department.

The Registrar told me he and his senior consultant colleagues had studied my scan and they had unanimously agreed that the best course of action was that I should have my right testicle removed.

"When do you want my decision?" I asked, stunned.

"Er, now," he said.

"But I can't make a decision now," I said.

"Then it's best if we proceed as though you've decided to have it done. You can always change your mind."

"When would you do it?" I asked.

"Next week."

The scan had shown a "lesion." They couldn't be sure it was cancer, but couldn't be sure it wasn't. So they didn't want to take any chances. Their plan was to remove my testicle as soon as possible, slice it up and biopsy it to determine what the lesion was.

"Isn't it possible to do a biopsy on the operating table?" I asked. My girlfriend had found references to such a procedure on the Internet.

But the Registrar's answer was: "No, because it takes three or four days to get the results."

"But what if I have the testicle removed and then find it wasn't cancer? "

"Most people are just relieved to know they haven't got cancer."

"If I had it removed, then found out it wasn't cancer," I said, " I think I'd be angry."

This didn't register with the Registrar.

"Are you really attached to it?" he asked (yes, that's what he actually said).

"Well, yes."

"It doesn't make that much difference," he said, referring to an orchidectomy (removal of a testicle). "Partners don't really like to look at them anyway."

I was getting in a terrible state, even though I knew testicular cancer was one of the "best" cancers to have - it is almost always possible to treat effectively, if it's caught early. Still, the fog of fear was coming down.

From the start, I got much more information from outsiders than I did from the hospital. Don't get me wrong - I'm not knocking the medical staff. They all did their best for me, within the constraints of the system, and they were utterly professional. But it was up to me to see what they could offer. I wanted to be the decision-maker, and ultimately I was.

An old friend, naturopath Dr. Don Canavan, in Oregon, directed me towards scientific papers suggesting that MRI was far more accurate than ultrasound in showing the nature of a testicular lesion.

The Registrar I spoke to about this was dismissive when I quoted him the papers. But he promised to look into it and we'd talk again - which we did. In that next chat, he said maybe I'd like to speak to the "organ grinder" -- a consulting physician -- maybe the man who was going to cut off one of my testicles.

It was now 11 days since the scan and a week before the date we had provisionally agreed for an operation.

When the consulting physician called me, we went through the same conversation about MRI - he wasn't impressed but asked for the references. This was the most bizarre episode of my little adventure - kneeling on a dirty pavement with my mobile and laptop, reading out scientific references to a medical expert.

Now, for the first time, the genuine possibility of a biopsy while I was under general anaesthetic entered the conversation. The consultant said that it was possible to do it; they could get a yes-or-no result on whether it was cancer, but I had to be aware there was a "grey area" of 10 to 15 per cent in such results that could only be resolved by further tests. Another consultant later told me that the grey area could be 30 per cent. If so, I might need two operations in succession -- if, after a few days, they found it was cancer.

I was stressed and now saw a biopsy - not an MRI scan - as the alternative to the operation.

I had the operation. The first thing I did when I awoke from the anaesthetic was to count my testicles. I still had two.

The "lesion" had been removed and identified as a benign capillary haemangioma (BCH) - only five testicular BCHs had ever been reported worldwide, so it was rare - and harmless, like a blood blister. The consulting physician was sure it wasn't cancer, and I got the all-clear when the final biopsy results arrived the following week.

But the fact remains that if I had taken the doctors' initial advice without question (as many of us do), I would now have only one testicle - plus the knowledge that the one I had lost had been healthy.

I thought I knew better - and, thankfully, this time I did.

Nigel’s Advice:

* If you have symptoms, don't delay in getting them checked out.

* If it's bad news, don't panic. Don't waste energy wishing this hadn't happened - deal with what's happening now.

* Don't suffer alone. Gather support from those close to you. Talk to your partner, family, friends and colleagues. The reactions of my children, mother, girlfriend and friends inspired me.

* Work the Internet, read and find out as much as you can about your condition.

* Talk to people who've been through similar experiences.

* Be prepared to be you own best advocate, though this may be one of the times when you are least prepared to do so. If you're not happy about the treatment your medical team has suggested for you, then say so.

* Try not to be intimidated by doctors and don't be afraid to ask questions. If necessary, make notes when you go for an appointment, or take someone with you.

* If you're unhappy about anything about your treatment, let the medical staff know about it.

* Don't be afraid to cry.

Read the fuller story.