She has a high risk of breast cancer, but has to wait years for preventive surgery

An Ottawa woman says she’s frustrated, angry and scared as she waits longer and longer for a procedure that could save her from the high risk of breast cancer she faces.

Ashley Ricks, 32, has been determined to have a more than 25 percent chance of developing breast cancer based on genetic testing and a medical assessment that takes into account her family’s cancer history.

Even with her risk identified and her doctor’s support in place, she is struggling to get the follow-up care she wants: a preventive double mastectomy.

“As I wait for the surgery, the thoughts keep rolling through my head: Am I going to get it? How long is this going to take? How certain is this? And it’s scary,” Ricks said from her south Ottawa home.

Ricks also has fibrocystic breasts – which cause pain, swelling and lumps. The condition required biopsies, a procedure to stop bleeding from her nipples and led her to seek genetic risk screening after speaking to her doctor.

Ricks showed CBC News reports from the Ottawa Hospital, where the estimated wait time for her double mastectomy rose from one to two years in February to two to three years in August.

She said she understands she is not as high a priority as people battling cancer, but she feels the pandemic has devastated the health care system.

“Enough is enough. I’m not asking to come before anyone… who has active cancer in any way, no. But living like this with daily pain is not good,” she said.

“The fact that I can’t hug my children sometimes isn’t fair to me either.”

The Ottawa Hospital (TOH) said it cannot comment on individual patients, but noted that surgical wait time estimates fluctuate.

It says surgical teams manage operating room and clinic demands “while prioritizing patients whose health needs are most serious, such as active cancer patients and other life-threatening and time-sensitive cases.”

According to Ontario Health’s wait time dashboard, the average wait time for all breast reconstructive surgeries at both TOH’s General and Riverside campuses is more than a year – 500 days and 459, respectively – longer than the provincial target of 182 days. It shows a trend of increased average waiting times since spring.

The same provincial dashboard goal for patients with “benign” breast disease is the same 182 days. The average wait time on the TOH general campus is 179 days.

Ricks wants to combine the two procedures to manage her risk of infection or complications from her diabetes.

TOH said it continues to seek to increase its surgical capacity to address the backlog created by the pandemic.

Ricks said she was offered the option of going to a regional hospital and paying upfront for the procedure in Quebec, but she said she could not afford the costs, which could cost her tens of thousands of dollars.

Preventive surgery is considered an elective

Dr. Muna Al-Khaifi, a general practitioner oncologist at Sunnybrook Health Sciences Centre, said a wait of one or two years is a long period of anxiety for someone considered high risk.

“We need to give these women prophylactic surgery as early as possible,” she said.

“This is still considered an elective surgery and most institutions – hospitals – have limited resources and… the priority is always women with active cancer.”

She would like to see a health system-wide strategy to help manage access to risk-reducing surgeries, as these are not available in all communities.

She still recommends that all women consider a risk assessment, because high-risk patients are eligible — as Ricks has done — for more regular screening, including MRIs.

Al-Khaifi said doctors do not always suggest preventive mastectomy for high-risk patients. They are more strongly recommended for women with a risk greater than 50 percent or with mutations in the BRCA1 or BRCA2 genes.

She said some patients, in consultation with their doctors, decide that risk-reducing surgery is worthwhile because of their family and medical history or other complicating circumstances.

More screening can increase wait times

Ellyn Winters, a breast cancer survivor and advocate, said the wait for preventative surgery could become longer because changes in the province’s cancer screening guidelines could identify more active cases.

She welcomes the fact that women in their 40s will be able to have mammograms without a doctor’s referral from this month, but she is concerned the system is not ready yet.

“Just by the numbers, we will see more cases of breast cancer,” she said. “The system is what the system is and so I actually think we’re going to actually see those wait times increase.”

Winters, co-founder of the patient-to-patient support network The Lyndall Project, said the threat of a cancer diagnosis can be difficult and people may want to move past it quickly with surgery.

A prophylactic mastectomy also offers more options for breast reconstruction because the patient would not undergo other treatments such as radiation, she said.

Yet, according to Winters, it is difficult to opt for a mastectomy.

“You finally get into the head space where you’ve made the decision, and then you find out you’re not a priority — that’s a hard pill for someone to swallow,” she said.