VANCOUVER — The BC Cancer Agency is reopening files on nearly 200 patients after discovering a genetic counsellor mishandled cases.

The genetic counsellor has been "relieved of her duties at BCCA" for failing to properly document the cases which means that some patients may be unaware they have elevated risks for developing inherited cancers.

All but a handful of the 192 patients she worked with have been contacted and sent apologies, said Dr. Barb McGillivray, medical director of the Hereditary Cancer Program.

McGillivray said there are "very small risks of imminent harm" to patients as a result of the counsellor's incomplete work but their records and tests must be completed, their referring doctors notified of their status and their files closed.

"We regret what has happened and we are very sorry. We take this matter very seriously. Patient safety and care are foremost as priorities," said McGillivray.

The Hereditary Cancer Program gets about 1,300 new referrals each year to help individuals with or without a personal history of cancer who want to know if they have elevated risks for cancer.

Individuals who fit the criteria, such as having two or more close relatives with the same kind of cancer, can be referred by their doctors to the program for counselling and possible testing to determine if they have a confirmed mutation in a hereditary cancer gene.

Breast, ovarian and colorectal cancers are the most common types which may be inherited. Overall, about five to seven per cent of cancers are believed to have hereditary causes. There are a handful of genetic counsellors working in the program.

Susan Frank, a 52-year old woman from Surrey, B.C., believes her experience triggered the whole investigation.

A year ago, Frank went to the now-fired genetic counsellor, who took her personal and family medical history.

Frank then had her blood drawn to learn if she's at risk for inheriting a breast cancer mutation from her mother and grandmother, both of whom died of breast cancer. Frank's mother died at the age she is now, which only fuels her fear and anxiety.

She was advised it could take about six months to get lab results revealing whether she has the BRCA genetic mutations associated with breast cancer. When the six months came and went, she repeatedly called and emailed the genetic counsellor but never got a response.

A colleague of the now-dismissed counsellor happened to hear a voice mail from Frank and instantly recognized the troubling situation.

The decision to probe each patient file was made late last year but the BCCA did not disclose the investigation until the Vancouver Sun asked about it Monday.

McGillivray said over the past month, the BCCA has had "risk managers" calling patients to explain the process now going on and to apologize.

The former CEO of the BCCA resigned a year ago and a permanent successor has not been found.

But the chief operating officer, Karim Karmali, also sent Frank a letter. The letter from Karmali states that he's "dismayed" about the "terrible experience" and the obvious "distress" it has caused.

Karmali apologized and told Frank that a detailed investigation is underway and she'll be informed about any "corrective action" resulting from the investigation.

The hereditary program services are not intended to be diagnostic but the genetic counselling and testing can be life-saving as it identifies those who need more aggressive screening and options like prophylactic mastectomies to consider.

The radical surgery is associated with a 90 per cent reduction in breast cancer risk in those with gene mutations. McGillivray could not say how many patients are in the same position as Frank — still waiting for results after being ensnared in the ordeal.

She said while 160 patients have been contacted, there are still some who have not.

Patients who have received counselling and are concerned about their cases should call 604-877-6000 and ask to speak to any one of the five counsellors who work in the hereditary cancer program area. Frank said even after learning that corrective action is being taken, she's distraught from the ordeal.

"I've learned my paperwork was never sent in, which is why my blood tests were not analyzed. This makes me feel like I was lied to and that the facts were misrepresented to me. There were quite a few blunders, and not just pertaining to me," she said. "I am now looking at getting results in about April, which will be 15 months after I submitted my blood for sampling and that's far too long."

pfayerman@vancouversun.com