Our Take: Navigating the cancer journey

In the News: “My wife was dying, but we didn’t tell our children.” This headline for an article in The Atlantic online caught our attention. Author Jon Mehlman acknowledges that other parents might not have made the same decision, believing that the couple’s three girls had a right to know they should savor diminishing moments with their mother. Marla Mehlman was dying of breast cancer. “But Marla didn’t want her girls to savor; she wanted them to sail, and that meant less information … Marla refused to let family time together feel too precious, too heightened, too sad.” Click here to read the full article.

Our Take: We approached Amy Tinlin, RN, OCN, an oncology nurse navigator and survivorship coordinator at the Memorial Regional Cancer Center in South Bend, for her perspective on guiding cancer patients through the decisions they face after receiving their diagnosis. Whether to tell family and friends is a very personal decision, Amy explains.

Amy Tinlin, RN, OCN

“When I first meet with newly diagnosed cancer patients, they are often lost, depressed, sad, angry, and they feel hopeless. They often do not want to burden their family and friends, which just isolates them from the people that they really need in their lives at a difficult time. Some patients are very private and do not want family and friends to know about their diagnosis. But as times goes on, the sacrifice of not telling loved ones takes its toll and it becomes difficult to hide the effects of treatments.

“Patients find that they need and deserve all of the positive comments, prayers and support of the people who are the most important in their lives. I have to say, most of my patient want as much support from family friends or even strangers that they can get, because it is too devastating to walk alone. Since cancer not only affects the patient who has it but also the people who love them, I feel it is extremely important to involve family and friends in discussions. Patients are very pleased about how many of their family and friends really want to do more to help them. I often tell patients that allowing their family and friends to help them through their cancer journey is very important because it’s human nature to want to help others and it makes those who are close to us feel needed.

“I once had a special patient tell me cancer was her enemy, but also her friend. This is so true. Even though no one wants to go through a cancer diagnosis and treatment, having cancer opens up a world of people who a patient wouldn’t have met without having cancer, who genuinely care about others and work hard to help them fight the disease. There is good and bad about every situation in life.

“I like to act as that bridge to knowledge and support that makes the potentially depressing journey of getting through cancer treatments, a more manageable experience. I tell patients who are very distressed when we first meet that knowledge is power over their illness. When they meet with their oncologist and get a plan of action to fight their disease, they will feel better and more empowered to fight. I stress every positive aspect of their disease that I can and breaking it down makes it more tolerable.

“I let every patient know that cancer is a long journey with many emotions, but that we will work together to obtain the best outcome. So many patients come in with frightening stories about people that they know who had cancer and had a terrible experience getting through treatments. After we talk extensively about every cancer being very different, and every individual’s body responding differently to the various therapies, and how they can’t compare their illness to another person’s illness, they develop a fighting attitude and a philosophy of conquering their cancer, one day at a time.

“There is even harder aspect of my job as an oncology nurse navigator. That’s when a patient has tried everything offered to eliminate their disease, but it still progresses and there is no chance of cure or controlling it much longer. Hope is still not lost, I tell them, because I help patients and their families embrace a different journey with the addition of hospice care. Hospice does not need to be viewed as “doom and gloom.’ Hospice care focuses on relieving a patient’s symptoms to give them the best quality of life for making the most of the time they have left.

“I’ve had the privilege of working at Memorial Regional Cancer Center for 34 years of my nursing career. I feel so special to get to be invited into my patients’ lives and to help them through a very hard, scary and ultimately life-changing experience. Oncology care is a difficult field, but it is so gratifying because of the wonderful patients I serve. They are real champions and I love to help them in any way I can, every step of the way.”