This post was written by Dr. Patricia Clark, Parkview Packnett Family Cancer Institute – Breast Care.
Caregivers should understand that a new breast cancer diagnosis represents a turning point in a person's life. Patients often view their lives as before the diagnosis and after. Here are some suggestions for things you, as a patient’s loved one, can keep in mind or contribute along their treatment journey.
Be an extra set of ears – The shock of the diagnosis can be overwhelming. I often tell patients they will only remember about a third of what I tell them at their initial appointment. Bringing in a friend or family member to take notes is very important.
My patients have benefited a lot from having a friend or family member take notes during patient's appointments just to keep everything straight and to have someone not undergoing a lot of emotional strain being able to put a second set of eyes on everything and being able to clarify what has or has not been said or recommended.
Understand that they are overwhelmed – Once they accept the diagnosis, the biggest factor patients cope with is the feeling they are no longer in control of their bodies or their lives. They must make many decisions quickly that will have permanent effects on their bodies without having time to sit with those choices. They’re forced to turn over trust to their physicians and treatment teams who they don’t really know.
Help with routine and planning activities – Because the cancer diagnosis has taken over control of a part of these patient's lives, it’s very important they live every single day keeping routines as normal as possible. Do not stop work, do not stop exercise, do not stop socializing and do not cancel vacations that were previously arranged if treatment schedules can be worked around these things.
Caregivers can be very helpful in planning activities. Emotionally coping with a cancer diagnosis can be somewhat overwhelming particularly added to the daily responsibilities of life. Caregivers and friends can lighten this load somewhat by pitching in with meals or help with daily chores.
Offer a sympathetic ear – Sometimes just listening is the best thing. Be patient as the person with breast cancer cycles through a range of emotions. These emotions are normal, and necessary, though many cancer patients beat themselves up for feeling the way they do.
Minimize outside noise – It can be difficult for patients to let the experts make the decisions that must be made. Rushing to the internet to regain control can drive anxiety sky high. Often, other patients who post on social media will post the most catastrophic complications or bad experiences that are not likely to occur. Or worse yet, they do not understand all the nuances or differences in individual patient's disease and treatment.
Patients who are afraid to undergo certain treatments will sometimes reach out to online patient support groups to find validation for not undergoing treatment. Participants often give advice which if followed would be deadly. These online support group members don’t understand that everybody's cancer is different and the treatment plans are individualized. Patients also receive a lot of pressure from their friends or family to do things like double mastectomies that do not improve survival or reduce recurrence and can make it worse in some cases. Family and friends also inadvertently tell newly diagnosed patients horror stories about someone they know who had breast cancer and had complications or did not do well.
When possible, steering the patient back to the guidance of their care team is helpful. Patients should also be made to feel free to obtain second opinions.
Take care of yourself, too – Caregivers also need to take care of themselves. Worrying about someone you love can be draining. But you can’t pour from an empty cup, and if you’re sick, you can’t help your loved one who is sick. Make sure you are getting rest, eating well and stepping away to recharge.
