Gail Kelpin had to wait six months for breast cancer surgery. By then, her cancer had doubled in size.

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Gail Kelpin will never know for certain. But she will always wonder.

After waiting more than six months for surgery this year, her breast cancer is more advanced than anticipated.

The non-invasive cancer she had been diagnosed with back in October had more than doubled in size by the time she underwent surgery at The Ottawa Hospital on April 26; that was 24 weeks after meeting with a surgeon and 27 weeks after being diagnosed.

During the surgery, doctors also discovered several small, invasive tumours, which are more serious than her initial diagnosis. Those tumours either weren’t there earlier or had not been detected.

“They were telling me, ‘Don’t worry, it’s not invasive,'” said Kelpin, 56. “But, in the end, it was.”

She believes the long wait — more than twice as long as recommended by the province — contributed to her worsening cancer prognosis and the need for a second surgery.

Her surgeon, she said, conceded she was probably right.

Kelpin is one of numerous Ottawa women who have been waiting longer than recommended for breast cancer surgeries in recent months and significantly longer than people in many other parts of Ontario.

For individuals and the health system, the costs of waiting are high.

Those waiting the longest are women with early-stage breast cancer. But prolonged waits can be risky, even for those whose cancer is initially considered slow-growing. Research shows that delaying treatment for breast cancer by even weeks can result in worse outcomes for patients and cost the health system significantly more.

The long surgical waits have driven some Ottawa breast cancer patients to pay thousands of dollars for surgery at a private clinic in Montreal. Others have travelled to hospitals out of town in search of more timely treatment.

One Ottawa woman, Lee-Anne Gill, was referred to a breast cancer specialist at the hospital in Cornwall after her surgeon at The Ottawa Hospital told her the wait for surgery there would be too long, given her diagnosis. The move will get her into surgery more quickly, but only by a matter of weeks.

Ottawa resident Jenny Ivanich, 62, made an appointment at the private clinic in Montreal last week after being told it would be up to two months before she had surgery for breast cancer in Ottawa. Her doctor called the timeline fair, given the stage of her cancer, but she decided she couldn’t wait. Ivanich, whose husband died of brain cancer a year ago, has a genetic risk of cancer.

She is preparing to spend her retirement savings on cancer treatment, if necessary.

“I would rather be alive and poor than dead and leaving my money,” Ivanich said.

The Ottawa Hospital has taken steps to improve the situation, and it is showing results.

Breast cancer patients are prioritized according to the severity of their cancers. Priority 3 and 4 patients are in the earliest, and less severe, stages of cancer. Priority 1 and 2 patients, whose cancers are more advanced and can be life-threatening, have surgery almost immediately, which can push back surgery dates for patients with earlier-stage cancer.

Earlier this year, just 13 per cent of Priority 3 patients at the hospital’s General campus were getting into surgery within target times set by the province. At the Civic campus, 21 per cent of Priority 3 breast cancer patients had surgery within the target time during the same period.

Those numbers are out of date and have improved dramatically, according to TOH spokesperson Rebecca Abelson.

“The hospital is increasing OR (operating room) access and is prioritizing patients based on clinical status, and those who have exceeded their wait time targets,” Abelson said.

Some changes at the hospital include extending weekday and weekend surgical time and bringing in more operating room staff.

“Our surgical teams work collaboratively to manage both the OR and clinic demands while prioritizing patients whose health needs are the most serious,” Abelson said. “We continue to work with the Ministry of Health and our regional health partners to improve OR access for our patients and build surgical capacity in the community.”

Abelson said that, as of the end of May, 80 per cent of all breast cancer patients on wait lists at The Ottawa Hospital were having surgery within provincial target times.

The specifics behind that figure, however, are still uncertain. The Ottawa Hospital did not provide a breakdown of surgical waits by patient priority or by hospital campus, as the province does in its open data on surgical wait times.

The Ontario government divides surgical wait times into two categories: The time from referral to first clinician appointment; and the time from the decision to have surgery until surgery.

The most recent data available from the province, until the end of April, shows the situation improving at The Ottawa Hospital but still far below provincial averages.

As of the end of April, the number of breast cancer patients getting surgery within target times (the second wait, according to the province) was still well below provincial averages: 28 per cent of patients at the General campus and 75 per cent of patients at the Riverside campus. The provincial average is 79 per cent.

The waits to initially see surgeons (the first wait) were also longer at both the Riverside (44 per cent within target times) and General (54 per cent) campuses than the provincial average of 84 per cent, according to provincial data.

At the beginning of the year, however, 90 per cent of patients at the General got to meet with surgeons within target times, which suggests it might now be taking longer for breast cancer patients at The Ottawa Hospital to get their initial appointment.

Meanwhile, as the hospital takes steps to get more breast cancer patients into surgery more quickly, waits are getting longer for patients yet to be diagnosed, according to the head of the hospital’s breast imaging section.

“It is unfortunately worsening,” said Dr. Jean Seely, who heads the TOH breast imaging section and is a leading researcher on breast screening.

Waits for a breast cancer diagnosis at The Ottawa Hospital are up to three months, which Seely called “unbelievably bad.” Health officials recommend waits of no more than three weeks, she said.

Although there has been an improvement in surgical wait times “what has not improved and has deteriorated is the time to get the diagnosis.”

She said that would likely contribute to worsening outcomes for some women.

Seely is among researchers who have documented the cost of later diagnoses of breast cancer in yet-to-be-published research. They found breast cancer treatment for Stage 1, the earliest stage, costs the health system around $20,000 in Canada. For women diagnosed with Stage 4 cancer, the cost skyrockets to $500,000.

“The delays are actually leading to increased costs,” Seely said. “This we know for a fact.”

Seely said while work is ongoing to lower wait times for diagnoses, demand has increased since the pandemic and more resources are needed to keep up.

Meanwhile, Lee-Anne Gill, who agreed to travel to Cornwall in the hopes of speeding up her breast cancer treatment, is scheduled to have surgery for her cancer — which includes invasive breast cancer — on June 21. That is not much earlier than what she was tentatively offered in Ottawa.

“I can only imagine how much my cancer has spread while I wait,” she said.

Patients at Cornwall General Hospital have also been experiencing long wait times for breast cancer treatment. In March, according to Ontario Health, no breast cancer patients there had surgery within provincial target times. That number has since improved, according to the hospital.

Kelpin said her experience had left her frustrated. She started crying when she was told she might have to wait as long as two months for a second surgery after she waited six months for her initial surgery which was more complex than expected. She could only get an earlier date by agreeing to go with a different surgeon.

“I feel really frustrated and upset that they took this pretty straightforward situation that could have been dealt with quickly and had less complications and drew it out. Now I am worrying that more of the early-stage cancer will turn invasive. This has a life-long impact.”