Advanced Breast Cancer

The role of a caregiver

Caring for a loved one with advanced breast cancer presents different challenges from caring for someone with a curable disease. Because advanced breast cancer has become a permanent part of the person’s life, your commitment, support and kindness can make this lifelong burden easier to bear.

  • Attend medical appointments. Your loved one may experience information overload, making it hard to digest or understand information. Two heads are better than one. Bring a list of questions to appointments, take notes and offer reminders later for follow-up items.
  • Educate yourself. Learn everything you can about advanced breast cancer. When you attend appointments with your loved one, don’t be afraid to show you’ve done your research by asking questions. Make sure you understand the current status and the treatment plan. The more informed you are, the better advocate you will be.
  • Get on the same page. When it comes to breast cancer, we often hear the term “survivor”; we hear it less from people with advanced breast cancer. Because they will always live with this disease — be it a short or long time — people with advanced breast cancer tend to feel very strongly about how they identify themselves, opting for alternatives such as “lifers,” “thrivers” or “metsters.” Talk with your loved one about her or his feelings. The topic could prompt other valuable conversations.
  • Make lists. Keep a list of questions about side effects, treatments, nutrition, exercise, etc., for the treatment team.
  • Be a thoughtful listener. Sometimes your loved one will want to talk about cancer. You know that advanced breast cancer is incurable, so don’t dismiss his or her feelings by giving unhelpful advice such as “Don’t worry about it,” or “It’s going to be fine.” Just listening is completely acceptable, and that simple act is often a source of comfort.
  • Suggest support groups. Realize that as the caregiver, you are not the only outlet for your loved one. Connecting with others who are dealing with the fears, feelings and experiences surrounding advanced breast cancer can be extremely therapeutic.
  • Revisit your role from time to time. Your loved one’s needs — and your own — will change, so make sure to reset expectations as needed to ensure you are providing the type of care that is expected and most helpful.
  • Take care of yourself. Caregiving is a mentally and physically exhausting responsibility, and you won’t be any good to your loved one if you aren’t good to yourself. Eat right, exercise and get enough sleep. Don’t ignore your favorite hobby. Lose yourself in a good book or movie. And don’t feel guilty when you enjoy yourself. Everyone deserves a diversion.
  • Know when to ask for help. Some anxiety and fears about your loved one’s illness and your responsibilities are normal, but if they prevent you from helping him or her or taking care of yourself, it’s time to seek help. Ask treatment team members for resources. They will be glad to help.

Helping with practical tasks

Daily life carries on despite an advanced breast cancer diagnosis. Clothes must be washed, refrigerators must be restocked and carpool obligations must be met. Seemingly simple household chores can take a great deal of your loved one’s time and energy, but you can knock them out in a fraction of the time.

Before offering your help, assess your own strengths. Are you good with children? Better with pets? A social media whiz? Once you’ve determined how you can best assist, be very specific about how and when you’d like to help. Your loved one might be hesitant to accept assistance, and clear-cut offers are much harder to turn down. Finally, keep in mind that advanced breast cancer is a chronic illness. The initial outpouring of support when someone is diagnosed soon fades and, as time goes on, your loved one may be left without much help. Space out the times you lend a hand.

 

Tips for the male caregiver

If you are a man caring for your partner with advanced breast cancer, you face a unique situation. To provide the best care you can, you may need to step outside of some of the stereotypes that have defined your relationship up to this point:

  • Open up. Not a fan of talking about your relationship? Since your partner’s diagnosis, communication is much more than just talking about your relationship. It includes talking about her feelings, your feelings and anything else that is on your minds — cancer-related or not. Knowing you’re not bottling up your feelings will be a stress reliever for her, too. You’re both going through an incredibly difficult time, so don’t be afraid to talk about it. Sometimes communicating just means listening, and that is just as important.
  • Choose to be positive. There will be speed bumps that derail you and mountains that seem impassable. While you can’t always avoid those setbacks, you can choose to adopt a positive and realistic attitude. Your genuine optimism may show your loved one a different, stronger side of you. 
  • Channel those emotions. If you are typically the “fixer” in the relationship, an advanced breast cancer diagnosis for your partner will really challenge you. You may feel angry, cheated and scared that this disease has invaded your life and you can’t cure it. You’re not the only one! Instead of letting those emotions get the best of you, channel that energy into controlling things you can. Finish those home repairs that you’ve been putting off, tackle items on the household To Do list or take on some household tasks that she typically handles.  Keep up your other relationships/friendships.
  • Take the sexuality out of the diagnosis. Your partner may be overwhelmed by fear that her body will look and react differently after treatment, but she may fear your reaction to these changes even more. Listen to her concerns. Assure her that her breasts, like her lungs or bones, are simply body parts affected by this disease. If this becomes an area of ongoing concern for either of you, don’t hesitate to ask your treatment team for guidance.

Caregiving – Top 10 ways to help

What to do What to say How it helps
Communicate “I'd like to set up an email group or use social media to share your treatment updates with family and friends. Let’s spend a few minutes talking about how you’d like me to share the news and with whom you’d like me to share it." Taking on this role relieves your loved one of having to repeat the same updates multiple times, and it ensures everyone hears a consistent message. [Tip] Sharing this Top 10 Ways to Help list with friends and family members via your new communication channel will let others know how they can help.
Cook “Don’t plan anything for dinner on Wednesday because I’m cooking. What time can I drop off a fabulous home-cooked meal?” Picking a specific day makes it harder for your loved one to refuse your offer. Not the best cook? That’s what delivery is for! Be sure to ask about special diet needs before planning your menu. [Tip] Ask if there is a meal schedule or if you can create one to avoid duplication.
Organize “I bet you’re up to your ears in paperwork. ‘Organization’ is my middle name. Can I come by on Saturday to help you make sense of it all?” Bills, research, insurance correspondence and medical forms can be overwhelming. Your help will provide much-needed peace of mind.
Drive “Tuesday is my day off. Can I take you to an appointment or on errands?”  When kids are involved: “I’ve reorganized the carpool schedule, and I’m taking your week. Enjoy your week off!“ Schedules can be hard to coordinate. If you can, offer up an extended block of time. That way, you’re not rushed and your loved one won’t feel like he or she is taking advantage of your time.
Child care “Are you ready for a couple of hours of alone time? I’d like to take the kids to a movie on Saturday afternoon.” Your loved one can enjoy some downtime and conserve energy for really important moments. A change of pace is a good diversion for kids of all ages. Your activity doesn’t have to be costly — an afternoon at the park, in the library or at your house works just as well. If your loved one prefers not to be left alone, offer to come over and entertain the kids at home.
Pet care “Has your dog been to the dog park lately? I’d like to take him this weekend.” Pets offer unconditional love, but they do feel the pain of neglect and stress, even when it’s unintentional.  If this pet doesn’t play well with others, skip the dog park and opt for a walk around the block or just some special attention at home.  [Tip] Treats and toys are always a nice surprise!
 
Clean/do laundry “I’m going to swing by on Saturday morning to throw in some laundry for you. I think I’ll vacuum and do a quick bathroom cleaning while I’m there, so let me know if you’re running low on laundry detergent or cleaning supplies.” Clean clothes and a clean living space are important. And, when things are clean, everyone at home is more likely to feel refreshed.   

 

Outdoor chores “When I’m doing my yard work this weekend, I thought I’d do yours as well.” Mowing the lawn, trimming the hedges and shoveling the snow take a lot of energy. Your help lets your loved one conserve valuable energy and reduce anxiety about chores that may be too massive to attempt.
Shop “I’m making a grocery run. What can I pick up for you?” Shopping is stressful because it also entails getting dressed, driving or finding a ride, being in crowds and more. You’re already going to the store, so this is a no-brainer.  
Make plans “I miss spending time with you. Can I come over for a little bit this weekend and we can have tea, watch a movie or just chat?” Do or talk about something completely unrelated to your loved one’s illness. Everybody needs a break! 

Additional Resources

 

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