“I have learned to let go of the ‘what if’s’, as in ‘what if I had exercised more?’or  ‘what if I had been a vegetarian?’  I can’t change the past –
I have to deal with the future and live in the present.”

GettyImages_452227009The phrase quality of life comes up often in any discussion of metastatic breast cancer. A good quality of life means meeting your physical, emotional, social and spiritual needs. Paying attention to each of these will help you live the life you want to live.

The challenge facing both you and your health care team is to find the right balance between your enjoyment (quality) of life and the treatment that is intended to prolong your life and relieve discomfort. Over time, other challenges may develop. Symptoms and side effects may limit your physical capacities and your ability to concentrate. You may find that people who formerly played a large role in your life are more removed from it. Emotionally, you may experience anxiety, sadness, and moments of deep despair or even clinical depression. You will likely have emotional ups and downs, from gratitude for the time you have, to anger and grief for the loss of future dreams.

There are approaches, resources, and treatments to help you enjoy your life. You have probably developed ways to cope with life’s challenges so far. You will call on these, and will develop new approaches as you cope with a terminal diagnosis. Empower yourself to discover the things that work for you.

Maintaining your physical strength is important to your wellness and your ability to engage in day-to-day activities. Walking, yoga, lifting simple weights or other exercise programs will help you feel better physically and improve your mood. You can ask your health care team to help you develop a regular exercise plan that suits your abilities.

Palliative care and pain management are also important components in your physical and emotional well-being.  Massage, pain medicine and other complementary therapies can help you enjoy physical activity.

“A supportive group of friends who understand and unconditionally support me is so important.They have been with me through my ups and downs. If you don’t share nagging fears with someone, they can take over your mind and become a paralyzing agent.”

Living with metastatic breast cancer brings with it many emotional challenges. Your feelings maybe up or down and may change from day to day, hour to hour, or even minute to minute. Part of this journey is developing skills and strategies to cope with your ever-changing emotions.

What are the things that bring you joy, peace or comfort? Watching a sunset? Reading a good novel?  Having coffee with a friend? Take time to focus on you and the things you enjoy.  Your mind cannot focus on two things at the same time, so focusing on something other than your cancer may help to relieve some of your anxiety. Anxiety can still creep into your thoughts even when you are involved in pleasurable things. It is healthy to acknowledge this feeling, deal with it for a limited time and then try to let it go.

Family and friends want to support you but may not understand what you are going through emotionally. It may be helpful to share your feelings and concerns with another person that is facing a similar diagnosis. This is commonly referred to as peer support and may be offered one-on-one or through support groups, either in person or online.Call Willow to find out more about peer support.

You may need the assistance of a professional counsellor, psychologist or psychiatrist. Seeking out professional help is a sign of strength, not weakness; so don’t be afraid to get the help you need. Your health care team can help you access these professionals.

Is it important to stay positive all the time?

There is no scientific evidence that having a just having a “positive attitude” will have a positive influence your cancer, or longevity. Fully expressing your emotions, both the positive and negative, and working through them is more important.

Everyone has a different way of coping with a metastatic diagnosis. There is no right or wrong way to feel. You may be optimistic that your treatments will provide you with quality time, but there will be times when your outlook will darken.

Some people naturally have a “glass is half-full” attitude and tend to seek out the positive in the negative. However, forcing yourself to put on a happy face all the time when this is not natural for you may cause you additional stress.  Accept yourself for who you are and know that you are doing the best you can.

Anxiety and Depression

Not surprisingly, many people with metastatic breast cancer experience depression and/or anxiety. It is normal for you to periodically feel sadness and grief at different stages of your cancer journey. Sometimes you may find yourself uninterested in things that you used to enjoy, feeling more tired than usual or even feeling like you want to stay in bed all day. That’s okay. Feelings like these are normal for people who have been diagnosed with metastatic breast cancer.

However if these feelings become overwhelming, last for several weeks and interfere with your day-to-day life and relationships, you should speak with your doctor or a mental health professional. There are different strategies available to help you cope, including counselling and medication.

Sexuality and Intimacy

“After a double mastectomy and lymphedema, I am still a sexual person with feelings and desires.  Resuming sexual activities was hard at first.  I think I needed to overcome my fears more so than my partner.”

Sexuality is closely linked to how you feel about yourself and how you relate to others. However uncomfortable, talk with your partner about your feelings or concerns about your sexual relationship. Remember that sexuality is more than the physical act of sex or intercourse. It includes all the feelings and actions that come with loving and caring for someone.

If you are experiencing physical challenges such as pain or discomfort with sex, talk to your health care team who may be able to provide you with solutions. Talk to your partner. New ways of being intimate can be found through open and honest conversation. Express your love with touching, holding hands, kissing and hugging. Consider couples’ therapy or other counselling if you feel like you could benefit from professional help.

Maintaining supportive relationships and a social life outside of cancer can help you achieve good quality of life. Although hard to do when in the midst of treatment, schedule time to see people who are important to you. Do the things that are most important to you.  Enjoying the company of other people can also take your mind off cancer.

Feeling connected to others can also reduce the sense of isolation that people with cancer may experience. This feeling of being alone may be due to geography (living far away from family and close friends), a lack of emotional closeness, or simply feeling that you are alone with your diagnosis. It can be helpful to have a strong circle of support around you but that may not always be available to you. Remember you can always call our Breast Cancer Support Team if you want to talk about how you are feeling or for help in accessing local support resources.

“My diagnosis has made my relationship with my husband and children much stronger.  We have learned that nothing in life should be taken for granted and that we are so fortunate to be in each other’s lives.”

Relationships can change after a person has been diagnosed with cancer.  It is common for friends and family members to be very supportive and caring – your relationships with them may become even stronger.  However, your relationships with some friends and family members may weaken as they pull away from your diagnosis in their discomfort of dealing with the reality of metastatic cancer. Speaking openly and honestly plays an important role in helping you cope with such challenges and will help you to identify and fulfill your need for comfort, support, understanding or time alone. Frank dialogue will help you avoid misunderstandings and hurt feelings.

It can be upsetting when friends, acquaintances, and even close family members say something to you or treat you in a way that is unhelpful or insensitive, even if it is not their intention to be hurtful. You can let them know that they are not being supportive. People often do not know what you need or don’t need unless you tell them, so it can be helpful for you to clearly express how you are feeling and what you need.

Understand that your family and friends may not always be in agreement with your treatment decisions.  They may feel that anything is worth trying, no matter what the consequences.  Your health care team may be able to help in these situations by referring you and your family or friends to a professional counsellor for guidance and support.  There will be various sides to each situation and an open mind will help you all come to a better understanding of each other’s points of view.

It may be best for you to avoid any unnecessary stress that negative relationships can add to your life as you try cope with cancer. Try instead to focus on the positive support that you are receiving from those who care about you

Living with a cancer diagnosis can cause changes to your spiritual well-being just as it does to your physical and emotional well-being. It can also offer you an opportunity to explore what spirituality means to you and how you can draw comfort from it.

Spirituality is deeply personal: for some it can be found in traditional religious practices and beliefs, for others it is a connection to nature, a sense of peace and purpose or a connection to a higher power. Your diagnosis may have weakened your spirituality or strengthened it. Or, perhaps it has played no role at all.

Spirituality can be an important part of living with your diagnosis and bringing you a sense of peace. There are many ways to tend to your spiritual well-being:

  • Pray or meditate – set aside a special time of the day to quiet your mind and your spirit. Reflect on your worries and concerns and try to let them go
  • Keep a journal – write about any difficult emotions as well as your joy and hope
  • Reflect in nature – appreciate the beauty around you, breathe and focus on achieving inner calmness
  • Connect with a spiritual leader or counsellor – hospitals and treatment centres often have chaplains on staff to help you and your family with spiritual concerns
As a young woman, you face unique challenges and some of your needs may be different. In 2011, a survey conducted by Young Survivor Coalition and Cancer Support Community identified some key challenges for young women living with metastatic breast cancer:

  • Interpersonal relationships – For many young people who have just found partners, or who are in new relationships, coping with the realities of metastatic breast cancer can be overwhelming. The same is true of close friendships; living with a life-threatening illness can put strain on all relationships. You may feel estranged from friends as you deal with a different reality from your peers.
  • Asking for help – As a young person used to being the caregiver for family members or friends, asking for help with your own cancer journey can be especially difficult.
  • Financial concerns – Many young people are in the prime of their careers and provide financial support to their families. Without the ability to work, or with a reduced work commitment, you may be unable to adequately support yourself or your family. Managing the expense of your treatment can be an added burden.
  • Employment issues – For a young woman trying to get ahead in her career, staying on top of vocational responsibilities, or seeking employment after a long break in the workforce is an arduous task. Having metastatic breast cancer often means having to adjust your work life and responsibilities in order to receive treatment and manage your health.
  • Managing side effects and staying healthy – Managing potential side effects become even more difficult when it comes to managing a household, maintaining a job or career, or focusing on a new relationship. Seeing your peers living full and active lives can leave you feeling even more isolated and alone.
  • Concerns about the future – Some young women have very practical concerns about the future as they live with metastatic disease. Who will care for your children? How will you continue to work if you feel sick? Who will care for you when your partner may be running a household with young children?
  • Connecting with other young women with metastatic breast cancer – If you are young and have metastatic breast cancer, you are not alone. Finding support that meets your unique needs as a young woman and building a community among other young women who are going through something similar will help to break the isolation that being young and having cancer can cause. Organizations like Rethink Breast Cancer can help. 

Rethink Breast Cancer is Canada’s leading breast cancer organization focused on young women who are concerned about and affected by breast cancer. Established in 2001, their mission is to continuously pioneer cutting-edge breast cancer education, support, research, and advocacy that speak fearlessly to the unique needs of young women (and men). By taking a bold approach to all aspects of the disease, Rethink Breast Cancer is championing change in the breast cancer movement.

Toll-free: 1.866.738.4465
Email: support@rethinkbreastcancer.com