How long is too long to wait for a cancer operation?

[BERIGAN]

How long is too long to wait for a cancer operation?

Article Comments (262) LISA PRIEST

From Saturday's Globe and Mail

August 9, 2008 at 2:19 AM EDT

The tumour in Debbie Trelenberg's abdomen was so large she was unable to fasten her jeans. She feared the mass might rupture – a sentiment shared by her family doctor – but an operation to remove it in Edmonton was nearly four weeks away.

So Ms. Trelenberg packed a bag, put on sweatpants and headed to the United States.

A grain farmer near Leduc, Alta., south of Edmonton, she paid $78,000 – money borrowed from her mother – for treatment that included surgery and a hospital stay in Amarillo, Tex., around this time last year.

In doing so, she raised an increasingly relevant question in a health-care system afflicted with disquieting waiting times: How long is too long to wait for a cancer operation?

Enlarge Image

Debbie Trelenberg, with her dog Bobo at her Leduc, Alta., farm. (John Ulan/Epic Photography)

In Ms. Trelenberg's case, she said it's a good thing she didn't wait. By the time the tumour was removed, on Aug. 8, 2007, it had nearly doubled in size from just two weeks prior, reaching 25 centimetres.

“It was becoming more painful by the day; it was growing,” said Ms. Trelenberg, now 44. “If you bent over slightly, there was this feeling that this thing is gonna blow.”

The bulbous piece of purplish flesh was diagnosed as a high-grade ovarian cancer. She was also found to have endometrial cancer. Despite the tumour size, her cancer was early stage, so it is highly likely she will be cured of the disease.

Since her operation, Ms. Trelenberg has twice been refused reimbursement by the Alberta government, most recently in June, when the Out-of-Country Health Services Appeal Panel said a wait of about four weeks was not found to be unreasonable by the surgeon who initially saw her.

Ms. Trelenberg obviously disagrees, and the Society of Gynecologic Oncologists of Canada is working to establish a benchmark on waiting times for such surgery.

“We really want to push the issue,” said its president, Marie Plante, “because we think it's a critical issue at this point.”

Establishing acceptable waiting times on the best available data will be a powerful tool for gynecologic oncologists and their patients to “obtain more resources if those wait times are not respected,” said Dr. Plante, division chief of the gynecologic oncology unit at Laval University.

Ideally, patients who have aggressive ovarian or endometrial cancers should be operated on within two weeks of being seen by a surgeon, Dr. Plante said; others with less aggressive cancers can, in some cases, safely wait up to four weeks.

Ms. Trelenberg felt she had no choice but to act quickly.

“It was like a monster, almost like an alien, you had this thing in there,” she said. “You couldn't avoid it, you could feel it, and it was just scary. You are scared to death to wait another month to take this thing out.”

Instead of waiting 26 days for a tentative surgery date of Aug. 28 in Edmonton, Ms. Trelenberg travelled to Amarillo, where she saw Sean Tedjarati, a gynecologic oncologist. He operated on her the next day.

Dr. Tedjarati confirmed he operated on Ms. Trelenberg, but referred to a letter he wrote to the chair of Alberta's out-of-country health services committee for additional comments.

In that letter, in which he appealed for the committee to reconsider its decision, Dr. Tedjarati wrote the “mass had significantly grown in size, at least from a documented 13 cm to easily 25 cm within a two-week period.” Ms. Trelenberg, he wrote on March 28, 2008, “acted appropriately in seeking care that needed to be expedited.”

Her family physician, Alison Sails, also wrote a letter to the committee chair, saying Ms. Trelenberg was right to obtain the treatment in the United States on an urgent basis.

“Given the speed with which her tumour enlarged and the aggressiveness of the cell type,” wrote Dr. Sails in the letter dated March 7, “I am convinced that it could easily have ruptured at any moment.” If that had happened, Dr. Sails wrote, it could have resulted in the “spillage of massive amounts of malignant cells through her abdominal and pelvic cavities.” (Dr. Sails could not be reached for comment.)

Steve Buick, spokesman for Capital Health, said there was no clinical recommendation that the patient travel to the United States for surgery because the province provides “fully satisfactory access.” Typically, such patients undergo surgery two to four weeks after being seen by a surgeon.

“There is no reason that we would send patients out of province just for faster access,” Mr. Buick said.

In Alberta, as in the rest of the country, the government will pay for out-of-country care so long as the services are medically required, are unavailable in Alberta or elsewhere in Canada, and are not experimental, among other things.

More than half of Alberta patients – 47 out of 84 – who sought funding for out-of-country treatment had it approved in 2006-2007, the latest figures available. Two additional patients had their treatment approved on appeal; 35 applications were denied in that same time period.

Now that Ms. Trelenberg has lost her appeal, the next step, should she choose to pursue it, is to make an application for a judicial review.

However, Tracey Bailey, executive director at the Health Law Institute in Edmonton, said such a review typically focuses on whether the “decision was made in a fair and reasonable way” and not on the medical details of the case.

Still, Ms. Trelenberg, who completed chemotherapy in Edmonton in December, 2007, has seen a lawyer and is contemplating applying for such a review.

“I believe this thing would have ruptured,” she said. “There was such a drive in me to get this thing out.”

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[John Tapscott]

Long wait times are the biggest problem in the Canadian health care system. (The system generally works well once you have gained access to it). It's hard to say whether the government should reimburse her for her surgery in the States - I would tend to say they should.

HOWEVER, and it 's a big however, there was one more step Ms. Trelenberg should have taken before heading to the U.S. for surgery. She should have shown up at the emergency department of her local hospital or even the hospital where the surgery was scheduled, checked in and told them that the tumor was growing and the pain was becoming unbearable. I'm betting she would have been taken for emergency surgery very quickly. If the emergency dept. had sent her home and told her to wait, then the trip to the U.S. would have been even more justified. This is how it often happens - go through the regular channels and you wait, go in through emergency and things often happen very quickly.

Edited August 11, 2008 by John Tapscott

[BERIGAN]

Long wait times are the biggest problem in the Canadian health care system. (The system generally works well once you have gained access to it). It's hard to say whether the government should reimburse her for her surgery in the States - I would tend to say they should.

HOWEVER, and it 's a big however, there was one more step Ms. Trelenberg should have taken before heading to the U.S. for surgery. She should have shown up at the emergency department of her local hospital or even the hospital where the surgery was scheduled, checked in and told them that the tumor was growing and the pain was becoming unbearable. I'm betting she would have been taken for emergency surgery very quickly. If the emergency dept. had sent her home and told her to wait, then the trip to the U.S. would have been even more justified. This is how it often happens - go through the regular channels and you wait, go in through emergency and things often happen very quickly.

interesting, did not know that....

78K for the surgery in the US is beyond ridiculous as well....

[Rooster_Ties]

How many people in this country die of cancer, because they don't have any health insurance at all?

[sidewinder]

Long wait times are the biggest problem in the Canadian health care system.

It's a problem shared with the UK too. Some improvement over the past few years though on these lead-times (there ought to be, considering the billions poured in by Brown ).

I wonder if waiting times in the Edmonton area have been adversely impacted by the big influx of people into Alberta in the last 5 years or so? As I remember it, there didn't seem to be too much of a problem with places like the Royal Alex.

Edited August 11, 2008 by sidewinder

[Tjazz]

What would the surgery cost in India? I heard the costs are usually about 1/3 or less than the USA. They also speak English. Course, you have to stay over in India for awhile afterwards, post surgery. Which is still pretty cheap, but not home.