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Impact breast cancer has on family members/caregivers

Published online by Cambridge University Press:  01 June 2009

L. Shockney*
Affiliation:
Johns Hopkins Avon Foundation Breast Center, Baltimore, MD, USA.
*
Correspondence to: Lillie Shockney, Johns Hopkins Avon Foundation Breast Center, 601 N Caroline Street, Room 4161, Baltimore, MD 21287, USA. E-mail: shockli@jhmi.edu

Abstract

Type
Focus On
Copyright
Copyright © Cambridge University Press 2009

More than 250 000 women were diagnosed with breast cancer in 2008. But millions were affected. Although the patients are the ones carrying the diagnosis, everyone who loves them and is involved in helping to support them through this journey is also affected by this disease.

This is a disease that was not meant to be tackled alone. Women need the support of loved ones, both emotionally and physically. Let us look at who is impacted and why:

Husbands/partners: Usually, these people feel just as scared on having heard the words ‘you have breast cancer’ as the patient herself. Though men, in particular, have a genetic history of not being comfortable with always verbalizing their anxiety and fears. They experience fear of losing their partner, potentially having to raise their children alone, not feeling confident how to take care of her surgically post op or during side effects of chemotherapy. They aren’t even sure if it’s okay to still be approaching her for sexual intimacy. Breast cancer surgery can alter her physical image (and her self image).

It’s important for partners to get directly involved, and there are many ways a husband or partner can help: attend her doctor’s appointments with her whenever possible; be the scribe at consultations, serving as another set of ears and eyes; do the research for her on the internet; send our broadcast emails to friends and family to update them on the news rather than both of you having to spend countless hours repeating the same information on the phone to loved ones; ask to see photographs of what her post op surgical incisions will look like so you are prepared; let her know that you didn’t fall in love with her because of her breast. There are times that you will be frustrated having to be Mr. Mom too. Recruit assistance of others – family members, neighbors – to help with carpooling children, fixing meals, doing laundry and other tasks we take for granted that she has done forever.

Children: Young children can become very confused by what they see happening in their home. Mommy is crying. Her hair is gone. Others are putting them to bed at night. This is all very scary. They need simple answers and reassurance that their world will be okay. They also, believe it or not, need reassurance that they didn’t cause their mommy to get breast cancer (a common fear of children from ages 4 to 10).

Teens present a different situation. They are going through their own hormonal changes that make living with them complicated. Now add a diagnosis of breast cancer to this and they can become more moody. Concerns range from being annoyed at being asked to do more around the house (thus taking their personal time away from doing teenage stuff) to fearing they may end up not only without their mother, but potentially having inherited this disease themselves. Keep them informed of what is happening. Appreciate them for the extra tasks they are taking on to help. But also make sure they have someone to confide in about their worries – this may be a counselor at school, softball coach, or even a therapist. Make sure they still have time in their schedule to be a teen.

http://www.kidscope.org is a good organization to consider contacting to learn more about ways to support children during this family crisis.

Parents: It doesn’t matter how old the patient is when she is diagnosed, she is still a child to her parents. Mothers, in particular, can unravel at the news that their daughter has breast cancer. They need emotional support and instruction on how to help constructively. Their instincts are to try to control a situation on which, frankly, they have no control. She is an adult now, and needs to make her own decisions, including about her breast cancer treatment. Mothers Supporting Daughters with Breast Cancer (http://www.mothersdaughters.org) is a good organization to contact for help.

Other caregivers: This is a time to rally friends, coworkers and family. If people want to know how to help, give them a list of options. Remember that they will have their turn, at some point, with a crisis and you will be there to support them too. Consider the following: taking kids to school/band practice; making casseroles to go in the freezer; sitting with you during your chemotherapy administration; babysitting to allow you and your spouse some private time together; shoveling snow; grocery shopping; bringing over funny videos to watch when you are feeling down.

If treatment is a long journey, caregivers, especially those living with you, can get burned out. It isn’t anyone’s fault, but it needs to be recognized and consideration given for ways to prevent it. So consider a respite opportunity. Your sister who has been helping you for weeks may benefit from a massage at the local spa. Treat her with a gift certificate. Your husband cooking dinner every night will be thrilled to hear that Chinese carryout is now on the menu for every Monday night. This also will be the night he can go to a neighbor’s house and watch football.

This disease does affect many … and it takes all of us to successfully help her along the journey from diagnosis to the end of treatment. When you look back as a family, hopefully you will see how much closer you have all become as a result of this experience.