Living with loss and uncertainty after diagnosis and treatment

As a result of the diagnosis and treatment for breast cancer, you and your partner are going to be adjusting to many changes in your relationship. Some of these changes will be temporary, others more permanent, and others will be defined by a great deal of uncertainty. Learning how to cope with loss and uncertainty is a big part of getting through breast cancer.

In this resource, we refer to people diagnosed with breast cancer as women. We also acknowledge that people who are diagnosed with breast cancer include men, transgender people and people who are non-binary.

Losses particular to breast cancer

Some of the losses will be primarily physical, and some of them will be more emotional or psychological. Changes you may experience include the following:

Physical changes such as the loss of a breast or hair loss
A loss of spontaneity as treatment schedules become an increased part of life
A loss of vitality or energy as a result of treatment
Loss of freedom caused by side-effects of treatment
Changes in sexual relatedness and intimacy
Potential loss of fertility (see section on Fertility for more information)
Loss around future aspirations or a sense that you may not achieve all of the life goals you planned for with your partner
A loss of feeling "invulnerable to health issues"
A loss of your usual, everyday routines
A loss of innocence

Mourning is normal

Grief and mourning are understandable and natural reactions to these losses. It is normal to grieve and may even be necessary for you and your partner to be able to move on. A few helpful things to remember:

Recognize that each of you may be mourning different aspects of what has occurred so don't expect that both of you will be feeling similarly about each change.
Recognize that each of you is experiencing a sense of loss in your own way and at your own pace.
Grief is a dynamic process, rather than a linear one. You may feel like you are on a roller coaster of emotions, and this too, is normal.
You may feel sadness, anger and guilt as part of your grief.
Grief often happens in waves and at different points over the course of the illness. Allow each other the time and space to experience feelings of loss and grief when they occur.

Others may perceive what you grieve as inconsequential. However, you have every right to mourn what you perceive to be a loss. For example, some women grieve their hair loss more than anything else and then feel ashamed because "it's only hair and it will grow back." Grief is very personal and specific to each individual. Sometimes you will surprise even yourself with things that strike you as losses. Loved ones may try to tell you to "be grateful" or to "snap out of it" because your treatment is going well, however there is nothing wrong with mourning these kinds of losses. In fact, mourning is an important part of recovery.

Grief takes time to process. People may want you to move on when you are not ready (e.g., after the treatment phase). It is important that you take as much time as you need to emotionally process your feelings.

Grief can be physical and can include exhaustion and pain.

Sometimes grief is not consciously acknowledged, or you and your family may want to focus on maintaining hopefulness or a positive attitude. This is important and it has its place. However, sometimes, the effort to strive for a positive attitude may minimize your feelings of sadness. Leaving room for the grief will open up spaces for the hope as well. Remember that balance is the key.

The positive side of mourning

While all of these losses are real and need to be acknowledged and mourned, many women diagnosed with breast cancer also experience positive changes following the illness. For example, it is quite common for a woman to review her life's course and re-assess her life priorities and values as a result of having been through breast cancer. This can be an opportunity to separate the "wheat from the chaff" and live more in line with the way that feels right for you.

Living with uncertainty

Living with a history of cancer often entails living with uncertainty. In this sense, a cancer diagnosis challenges one's experience of predictability and personal control. Although there are many aspects of life and the future that we don't have control over, people are generally not very in touch with this reality. This experience is referred to as the "illusion of control," an illusion which is often shattered when cancer comes along. Living with greater uncertainty is no easy task, but sometimes a shift in outlook or lifestyle can help:

Identify aspects of your life that you can assert some control over (e.g., diet, exercise, planning a fun night out) and incorporate these aspects into your weekly and daily routines.
Learn how to live in the present. Some couples find that "taking one day at a time" is a helpful way to cope with the uncertainty related to the disease. Living in the present can help you and your partner to not become overwhelmed by fears about the future.
Re-prioritizing time together as a couple can be helpful in keeping in place a strong sense of togetherness and support (e.g., instituting 'date night' every couple of weeks).
Identifying additional or new goals and aspirations for yourself as a couple, like planning a special trip or learning a new activity together.
Living with loss and greater uncertainty is never something a couple chooses for themselves. However, working through these experiences together can often enrich the relationship and deepen your intimacy in ways that may not have occurred otherwise.