I wish I could fix it: Information for partners of people with breast cancer

Both you and your partner will probably feel distressed about the diagnosis. However, after a woman starts her treatment she will often feel a bit better because she is doing something. You, on the other hand, may feel like you are unable to do anything and this may leave you feeling frustrated. It can be especially hard if you are the type of person who likes to fix things.

Things that may help

• Going to medical appointments with your partner with a list of questions, and writing notes that you and your partner can read later. Prioritize your list so the most important questions are at the top, in case you run out of time.
• Helping keep track of appointments and medications. Many patients experience a foggy or forgetful feeling; having assistance with logistical details can allow your partner to focus on recovery.
• Reading about breast cancer with your partner. Read information which comes from reliable sources such as her care team, and reputable websites such as the Canadian Cancer Society, US National Cancer Institute and PYNK. Make sure the reading is something you are both interested in doing and is not increasing anyone’s anxiety levels.
• Asking your partner what you can do to help her. Suggest she write a list for you. The list can include things such as driving her to appointments, or just listening to her when she needs to talk.

Partners often find it hard to know what to say, and some think that they need to always stay strong and "put on a brave face." Saying things like "you’ll be fine" or "try to keep positive" may not be helpful. They may actually make it harder for your partner to talk to you about how she really feels.

Things that may help

• Listening to your partner and letting her talk about her fears and hopes for the future. This will help her feel she is being heard and understood.
• Talking to your partner about how you are feeling.
• Being aware that there is significant value in being present, even when there is nothing practical you can do. You can use nonverbal communication such as eye contact and holding hands to reassure your partner of your love, and that you are in this together.

Things to avoid

• Feeling like you need to fix the situation – women often just want someone to listen.
• Saying things like "be positive," "keep your chin up" or "you’ll be fine."

Since your partner’s diagnosis, you may have had to take on more roles to help. These may include household tasks such as cleaning, shopping or taking care of children, caring for your partner, or sorting out the finances. At the same time, you are probably still working. Many partners find it hard to get used to these new roles, and this can add to their stress.

Be aware that it may also take some time for your partner to get used to doing less, especially if she is used to doing things herself.

Things that may help

• Ask your family and friends for help. Tell them exactly what you need from them. Give them a list of things you would find helpful and let them choose what they can do for you.
• Contact a social worker for practical and supportive guidance
• Talk with your boss at work about flexible working arrangements if this would help you.
• Talk with your partner about how you are both coping with the change in your roles.

Things to avoid

• Feeling guilty about asking your partner how to do things, especially household tasks.
• Beating yourself up if you don’t get everything done.

It can be hard telling your children that their mother has been diagnosed with breast cancer, but research shows that being open with them is the best thing. Keeping them informed will ensure that they won’t feel left out, and that they won’t fill in the blanks with their imagination. If they find out some other way, they may become angry and resentful.

Your children may feel a range of emotions and express these in different ways, from behaving badly to putting on a brave face. One way of reassuring children is by making sure they understand that their own needs and concerns will be addressed.

There are a number of resources and books which may be help you handle this issue. These include The Kids’ guide to Mommy’s Breast Cancer by Karen Stowe, and Nowhere Hair by Sue Glader, both available on amazon.ca. Additionally, Rethink, an online resource and community, has written and video information which is helpful for speaking with children.

Things that may help

• Talk to a breast care nurse, social worker, psychologist, counsellor or Child Life Specialist about the best ways to talk to your children about breast cancer.
• Talk openly with your children. Make it clear that the cancer is not their fault. It’s best to use clear, short sentences, and provide information in small doses.
• Reassure your children that someone will be available to look after them.
• Allow your children to see that you are upset sometimes, rather than shielding them. They may think they have done something wrong to upset you, so make it clear that you are not upset with them.
• Let your children ask questions and talk about difficult things.
• Maintain routine and structure in your children’s lives – encourage them to participate in sport and normal activities. Routine provides a sense of normality, which is reassuring to children.
• Let your children’s class teacher and school principal know about the situation.
• If you have older children, talk to your partner about whether she feels comfortable inviting them to attend treatment sessions with her. This will allow them to see what happens during treatment and may reduce fears that they have.

Things to avoid

• Keeping secrets.
• Letting go of structure and rules.
• Giving orders.
• Telling children to be good for mommy or daddy.
• Always rushing to reassure them, and trying to fix everything for them.
• Always pretending everything is okay.

If you are looking after your partner, you may be finding it hard to cope yourself. Maybe you have put your own wellbeing on hold to give all your attention to caring for your partner. Doing this for a little while is okay, but by putting your own needs on hold for too long, you may ‘burn out’ and no longer be able to support your partner very well. Additionally, if a woman feels that her partner is too overwhelmed, she might decide not to share her concerns and fears. Looking after yourself, and receiving support from someone other than your partner, will help you better support her.

Things that may help

• Think about looking after yourself as beneficial, not as an indulgence.
• Take some time to do something you enjoy – going for a walk or spending time with friends. Even 30 minutes a day will help.
• Talk about your concerns with a close friend or family member
• Talk to your doctor, who may be able to give you strategies to help you cope or refer you to a counsellor or social worker. Your partner’s cancer team may also be able to refer you to an appropriate professional who has lots of experience working with the partners of cancer patients.
• Make sure that you get enough sleep, eat a healthy diet, and exercise often. Together these things can help to lower stress and tiredness, and improve your mood.

Things to avoid

• Hiding your feelings from others.
• Feeling guilty about being depressed or anxious – get help if you feel you need it.
• Feeling like you always need to be positive or uplifting – just be yourself.

After breast cancer treatment, women experience a variety of physical changes. In addition to the loss of a breast or part of a breast, your partner may also find herself having to deal with weight gain or loss, hair loss, scars, and skin changes. These changes can make women feel less attractive and lose confidence in themselves.

Many women grieve for their lost breast(s) and their old body. While some women adjust quickly to their new body, others find it hard to come to terms with the changes. Some feel they are ‘not quite whole’ without two breasts, and using breast prostheses or having a breast reconstruction is really important. For others, having a breast shape is not so important. Everyone is different, and adjusting to these changes can take time.

Many women also find that their sexual wellbeing is challenged by breast cancer and its treatments. Breast cancer treatments often produce hormonal changes that cause women to have less interest in sex. This is often made worse by other physical and emotional side effects of treatment. Some women experience vaginal dryness (especially during intercourse) and hot flashes. Fatigue can also be an issue for women long after their treatment has finished, which can be debilitating. Depression, anxiety and loss of confidence in their attractiveness or femininity are also common. The resultant effects on their sexual relationship can have a very negative impact on their overall relationship with their partner

For more information about body image and intimacy, visit sunnybrook.ca/bodyimage for written and video resources about body image provided by Sunnybrook Hospital’s PYNK program. You and your partner can also read Intimacy After Cancer: A Woman’s Guide by Dr. Sally Kydd and Dana Rowett, available on amazon.ca.

Things that may help

• If you are missing the intimate aspects of your relationship, speak to your partner about how you are feeling. Try talking with her outside the bedroom, where you both may feel less pressure, and reassure her that you aren’t asking her to change anything, just sharing your feelings
• Tell her how much she means to you, and regularly reassure her about how you feel about her physically.
• If your partner does not want to have sex, invite her to be intimate with you without having sex. Try other ways of being close like holding hands, kissing, hugging, massage and touching.
• If your partner wants to be physically intimate but feels too self-conscious to be naked, suggest that she may like to try wearing lingerie to provide some coverage.

Things to avoid

• Pressuring your partner to be intimate with you.
• Avoiding your partner, as she may think that you no longer find her attractive.

After the cancer treatment is finished, many partners expect things to go back to the way they were before the cancer diagnosis; however this doesn’t always happen. Often women feel as though their lives have changed and they are not the same person they used to be. After their main treatment is finished, many women feel scared as they no longer have regular contact with their specialist doctors. They worry about the breast cancer coming back and that, if it comes back, it may not be found soon enough. Many women also have ongoing side effects from their previous or current treatment, especially if they are on hormonal therapy.

It can be frustrating for you when you realize that life may not return to how it was before your partner was diagnosed. Many people who have completed breast cancer treatment have what they call a ‘new normal’. This is a common experience, which may see them exploring new approaches to life, and re-prioritizing their values and focus. They may not be as carefree as they once were, or they may be more carefree. They may learn to say ‘no’ to things and put themselves first. Many women enjoy their ‘new normal’ and the new focus it gives their lives, and most partners are also able to adjust and resume a happy relationship.

Things that may help

• Allow yourselves time to adjust to your "new normal."
• Be prepared that not all things will return to the way they used to be.
• Remind yourself that many women feel they are not the same person they used to be and, for them, life has changed.
• Encourage your partner to take her time finding her "new normal" and reassure her she will have your support along the way.
• Seek help from a counsellor or social worker to help you both through this time.
• Consider planning something special to mark the end of treatment, for example, a short trip or celebration with the family.

Things to avoid

• Putting pressure on your partner to return to "normal" life.

Sometimes patients in LGBTQ2S+ relationships experience additional barriers to health care when faced with a diagnosis of breast cancer.

Patients diagnosed with breast cancer and their partners sometimes experience anxiety when considering whether or not to tell members of their medical team about their sexuality. They may be concerned about being treated differently if they do. As a couple, it is important to seek out health care professionals who are able to provide you with inclusive and culturally-sensitive health care. While mentioning your sexuality to health professionals is entirely up to you and your partner, most Canadian health-care facilities are committed to being safe and inclusive spaces where all patients can access equitable care. Learning about, and implementing, inclusion and equity is an ongoing process. If you feel you are facing barriers, please approach your health care provider to discuss your needs and how best to support you.