By Deborah Jeanne Sergeant
Two generations ago, a cancer diagnosis felt like a death sentence. Thanks to medical advances in treatment, more people can survive the disease. But that doesn’t take the sting out of hearing a doctor say, “You have cancer.”
In some cases, what patients do next can affect how well they cope and even their chances of survival.
1. Avoid the internet.
“The internet is the enemy of mental health,” said Lynn Acquafondata, licensed mental health counselor and owner of Crossbridge Counseling and Crossbridge Wellness in Rochester. “There’s a lot more to it than reading something on the internet. Different things affect different people in different ways. Especially for those with high anxiety; stay off the internet and talk with your doctors. Doctors may recommend a website if they think it’s appropriate for a particular person.”
2. Take time to mourn.
“When a person gets a cancer diagnosis or any other serious diagnosis, there’s a grieving process,” Acquafondata said. “There’s a loss of health and who you thought you are. You’re faced with your mortality.”
3. Seek mental health help.
“Counseling could be helpful for the person and their family members,” Acquafondata said. “Get support if you need it or even if you don’t think you need it. Go to a couple’s counseling sessions. Walk through it with someone. Reach out to support groups.”
4. Don’t hide the news from loved ones.
“Some people hide cancer diagnoses,” Acquafondata said. “That’s destructive. You don’t have to necessarily post it on Facebook, but at least have some close people to you to talk with about how you’re affected by it.”
5. Don’t assume the worst-case scenario.
“Keep things in perspective,” Acquafondata said. “Not every cancer is a death sentence. There are treatments and many ways to move forward.”
6. See what can be done.
“Explore your treatment options,” said Bethany Walton, senior oncology social worker and collaborative care therapist for Rochester Regional Health. “Just because one doctor is telling you one thing, that doesn’t mean it’s absolutely the way to go. You can get a second opinion if you want. We want you to get the best treatment for you. Ask your doctor if you’d like to seek a second opinion.”
7. Seek helpful resources.
“Ask to meet with a social worker,” Walton said. “Every office has social workers available to patients. The social worker might think of things that didn’t even cross your mind like financial grants, transportation to appointments and things you’ll need to plan for in the future.”
8. Discuss what you want.
“Talk with your doctor and your care team about what your goals are for care,” Walton said. “Make sure they know what your goals are. We have patients who don’t want to pursue treatment and that’s their right. No question is a dumb question. You don’t know what you don’t know, so always ask.”
9. Get organized.
“Start with a trapper folder so you can keep all your information together in one place,” said nurse Anna Morrison, a lymphoma nurse navigator at James P. Wilmot Cancer Institute. “Write down a list of your medications including prescription and over-the-counter medications, vitamins and supplements. Include dose and frequency and keep up to date during this time.
“Write out your family history — include parents, siblings, grandparents, aunts and uncles and children. What medical history runs in your family: diabetes, hypertension, stroke, cancer? Make a list of surgeries and medical diagnosis including year and physicians involved. Have name and phone numbers of your other treating doctors, primary care, cardiologist, dermatologist so that they can be included on notes and aware of what you’re going through,” she said. “Write out the story of what transpired prior to your diagnosis. Include when you noticed things, who you saw and what tests were done. These will be the first questions you will be asked when you meet your oncology team and being prepared gives more time to discuss the important aspects of your diagnosis.”
10. Bring a scribe.
“Determine who can be with you at the first appointment to act as a second set of ears,” Morrison said. “This is overwhelming news. There will be much information at your first appointment and it is important to be able to listen. Ask the nurse or physician if they mind being recorded or ask your spouse or a friend to be your scribe during the appointment so that you have notes to look back on. Read through the information given and use recommended sites for disease specific information.”
11. Accept help.
“Look to those who can offer support,” Morrison said. “It takes a village to successfully get through difficult times. Make a list of people who you could ask for assistance if needed. Things that you can call on others for: rides, meals, light house cleaning, lawn mowing. Patients often tell me they don’t want to ask others for support, but friends, family and community do want to help. It makes others feel good if they can do something and being specific with a task is so much better than leaving them up to guess what would be helpful. ‘Can you make me a few meals that I could freeze in case on treatment days I am lacking the energy to be able to cook?’
Ask your neighbor if they know anyone who could mow your grass or shovel your driveway during this time and see what happens.”
12. Pick your team.
“Chose a physician that specializes in your disease,” Morrison said. “Have they written any published journals? Are they leaders in their field? Are they able to talk with you as a partner in this journey? Listen to their recommendations and try not to make up your mind before hearing all their recommendations. Sometimes people say, ‘I would never do chemotherapy’ before it is even mentioned. Things have progressed in cancer care, so don’t let experiences from years ago set the tone or paint your perception. Have a list of questions, ask how things work — who is your medical care point person to call, take a tour of facility where you will be treated, ask when blood work needs to be done, review calendars and schedules.”