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Life after cancer: Empowering survivors, educating doctors

When Tristan Williams was 12, he was given a diagnosis of thyroid cancer. His family was living in Florida back then and when his treatment was over, there was no follow-up, no discussion of what to expect, what side effects there could be or how he would feel.

Growing up, Williams, now 24 and living in LaSalle, remembers thinking about death a lot.

“I have struggled all my life with the fear of it coming back.”

In 2009, Williams was given a diagnosis of multiple sclerosis. Three years later, the thyroid cancer did return. One of his hips was removed and he was fitted with a titanium prosthesis. But there were complications and he developed a staph infection.

“I’m on my third hip now. This one is silver, which is supposed to be better,” said Williams, who does advocacy work for multiple sclerosis sufferers and fellow cancer survivors. “Between getting MS and my fear of the cancer coming back, it has been insane, a real roller-coaster for me. It is so much bigger than having cancer. You aren’t the same person you were before.”

Which helps explain why Williams has eagerly embraced the work of Gen Chaput.

A physician at the McGill University Health Centre, Chaput is founder, heart and soul of the fledgling Cancer Survivorship Program, an innovative campaign launched by the MUHC and the Rossy Cancer Network to educate and raise awareness among patients, their loved ones and their family doctors about the special needs and greater health risks facing those who recover from cancer.

Higher instances of heart disease, melanoma, sexual dysfunction, osteoporosis, chronic pain and cognitive losses sometime described as “chemo brain” are only as few of the after-effects that have been identified in cancer survivors. Some symptoms are temporary, others are permanent.

But Chaput, who will co-lead the project along with partners as the Jewish General Hospital and St. Mary’s, said large numbers of cancer survivors also struggle with anxiety and depression stemming from the fear of a relapse, loss of libido or changes in how they look. Survivors often suffer from treatment-induced problems and psychological distress, “which may lead to an incidence of suicide that is twice that of the general population.”

As a physician treating cancer patients, Chaput said she was struck by how often survivors were unaware of the potential consequences of the cure. The deeper she probed, the more she worried that survivors were falling between the cracks — because they were unwilling to burden their oncologists with sensitive questions about mood swings or impotence, because their general practitioners didn’t look for possible signs of trouble resulting from their cancer treatment, because they didn’t have a family doctor.

“There are such unmet clinical needs,” Chaput said. “Fears of recurrence, and instances of depression and anxiety are huge. Or a person may be in pain, but afraid to take the opiates they’ve been prescribed. But Tylenol is not going to do it.”

“You are in shock when they treat you,” said Vivianne Korah, a five-year breast cancer survivor who had a mastectomy and underwent chemotherapy at the Cedars Cancer Centre between 2009 and 2010. “When you finish, you are a bit lost. You don’t know what to look out for. There is no continuity of care right now, and not all family doctors are aware of the extra needs of cancer survivors.

“Men, especially, can be shy about discussing sexual problems they are having. People feel very alone.”

When the MUHC opens its new building at the Glen campus this spring, the Cancer Survivorship Program will open a clinic that will aim to bridge the gap between active treatment for cancer patients and monitoring their health once the cancer is gone.

The clinic will also identify cancer survivors who don’t already have a family physician and match them up with a GP to ensure they receive the appropriate follow-up care.

Chaput admits that at first some of the oncologists she spoke to balked at the idea. “They said, ‘You are going to steal all our healthy patients!’ ” But she believes it is important to educate patients about normal after-effects, empower them to ask questions about their care, and inform to GPs what they need to watch and test for in cancer survivors.

Plans are also in the works for group sessions where cancer survivors can share their experiences, learn from and lean on one another when necessary.

“This is about patient empowerment, because not everyone has a good support system,” said Korah.

Story Source: The above story is based on materials provided by MONTREALGAZETTE
Note: Materials may be edited for content and length


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