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What should I do if my father’s cancer treatment doesn’t work, a patient asks

The Personal Health Navigator is available to all Canadian patients. Questions about your doctor, hospital or how to navigate the health care system can be sent to AskLisa@Sunnybrook.ca

The Question: My father has been diagnosed with lymphoma and has begun treatment with one round of chemotherapy so far and several medications. I was wondering if early results are not favorable how can I get better care rather than what he is receiving now?

The Answer: There are more than 40 different types of lymphoma, a cancer of the lymphatic system, that are typically divided into two main types: Hodgkin lymphoma and Non Hodgkin lymphoma. Since the medical protocols for treating these forms of cancer are standard, most can be easily managed in community and teaching hospitals, according to Eugenia Piliotis, a hematologist who specializes in lymphoma at Sunnybrook.

“In the majority of cases there is no need to be sent to a teaching hospital for treatment,” said Dr. Piliotis, who is also associate professor in University of Toronto’s department of medicine. “Exceptions to that would be if there is a potential for a clinical trial you may be eligible for that you and your physician think you would be a good fit.”

The other exception is if you have a rare type of cancer, such as cutaneous t-cell lymphoma, high-grade lymphomas, or other rare, aggressive types of lymphoma that require super-specialized treatment by clinicians as well as pharmacists and nurses most familiar with them.

What I am wondering, though, is if this is a treatment issue or one if you are lacking confidence or are having trouble trusting the oncologist. When a patient has been diagnosed with cancer, it is almost always the worst thing that has ever happened to them. It’s not a surprise, then, if you are wondering whether the treatment your father is obtaining represents the best possible care.

If your father does not have a favorable response that may be due to a cancer that is not responding to treatment and requires another protocol, rather than a clinician who is not providing the best care.

Having said all that, it is reasonable to ask for a second opinion if you are having doubts or you want to confirm the diagnosis and treatment plan. However, to obtain that second opinion, it is best to ask the treating oncologist to arrange it – not your family physician. Just having this conversation with the oncologist may help dissolve some of your concerns.

If you want a second opinion and you are concerned about offending the oncologist, don’t be. So long as you word it politely, it should not be an issue – oncologists are used to being asked for second opinions.

You may want to word your question something along these lines: “I have faith in you but I’m anxious. This is a big diagnosis and I want to make sure I’m doing the right thing for myself. Is it possible to get a second opinion?”

That oncologist is the best person to facilitate the second opinion as she or he can tell the other cancer specialist what treatments, tests and scans you have had.

“Most often patients get here and we tell them the exact same thing that their primary oncologist has already explained, so usually we are just reassuring,” said Dr. Piliotis. “Everyone deserves a second opinion if they have concerns.”

I wish you and your father all the best.

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

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Lisa Priest

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Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

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