Survivor's Guilt

By Debbie Kerr

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When we complete our cancer treatments, there’s a flood of emotions. We feel relief. We feel a sense of pride for having made it through the treatments and emotional turmoil. We are excited to start a new phase of our life. We feel like we’ve turned the corner and left cancer behind. And, for some of us, in the midst of all those great feelings, there is a sense of guilt that we've survived while others have not. 

Guilt is a powerful emotion. It can make us say and do things we might not normally do. If we keep these feelings bottled up inside, we can become angry at ourselves and the people around us. We can even begin to believe that someone else should be alive instead of us. 

What is a survivor?
Dictionary.com describes a survivor as “a person who continues to function or prosper in spite of opposition, hardship, or setbacks.” A survivor “endures or lives through (an affliction, adversity, misery, etc.).”
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This is the perfect definition of what a cancer patient goes through. There’s the diagnosis and then trying to function as normally as possible while undergoing treatments and wondering about the future. This definition is also good because there is no specific end to a cancer journey. Even after the treatments end, there may still be medications to take and tests to have done in an effort to keep the cancer from returning. The fear of recurrence is a lifelong experience, although it may lessen with time. 

When does someone become a survivor?  
This simple question triggers a lot of debate and those who take part in the debate feel strongly about what event marks the point at which they consider themselves a survivor.  

Some people believe they are survivors from the date of diagnosis. They believe that once they know they have cancer and continue to move forward, they are survivors. Others believe that the day they had surgery was when they became a survivor, because their cancer was removed from their body.  For others, the end of all cancer treatments marks the beginning of being a survivor. 

It’s a very personal choice.

Why would someone feel guilty?
Some people say, “Why me?” when they receive a cancer diagnosis and then say, “Why me?” when they live and someone else dies. There is nothing fair about cancer. No one deserves cancer. No one deserves to die from cancer. There are so many factors that determine who develops cancer just as there are many factors that determine who will reach a status of no evidence of disease (NED) and maintain that status for the rest of their lives.

While science has been able to identify some contributing factors to developing cancer, it’s still unclear why some people with those factors will develop cancer and others will not. There’s also no certainty about who will respond to treatments and who won’t.  There’s so much more to learn.  At this point, we don’t know the answer to the question, “Why me?”

Since we don’t know how to prevent cancer from ever happening and we don’t have treatments that will cure everyone, some people will not survive. It’s a reality…a very painful reality. Each time we hear about someone dying from cancer, a little piece of us dies inside. In fact, sometimes, when the person who dies is very young or mother with young children, we may wonder why it wasn’t us that died. We may feel guilty for the very thing that we wanted during treatment...to live a full life without cancer. 
 
But what can we do? We didn’t cause the other person to die. There is no one to apologize to. There is no way to make things right (at least from our perspective).  The best you can do is to take action.

What can we do?
While sometimes sharing our guilt make us feel better, actions speak louder than words. Instead of spending valuable time feeling guilty, be productive by doing some of the following:

• Encourage women to have annual mammograms starting in their 40s, even if guidelines indicate otherwise. In my case, the guidelines recommended I have my first mammogram at 50 but I was diagnosed with breast cancer when I was 49. It’s better to be safe than sorry.
• Tell women to find out their breast density so that they know if additional testing is required (perhaps an ultrasound or MRI) to ensure they truly don’t have cancer. Dense breasts increase the chance of developing breast cancer and can make it more difficult to detect.  Some women are told that their mammogram looked good only to be diagnosed with breast cancer a little while later. Be your own advocate. 

• Educate others by telling them that there are many signs of breast cancer and a lump is just one of many.  For example, an inverted nipple, orange peel-like skin, and fluid coming from a nipple are signs that someone may have cancer. 
• Do regular self-breast examinations. Get to know your breasts so you know when something has changed. There is even an app that will help you learn how to do it correctly. 
• If you have the opportunity to change laws (for example, make breast density information a requirement on mammogram results), then sign petitions that will help to make that happen. There are different petitions to create change in different countries. 
• Be a friend and a support to someone who is on their own cancer journey. Everyone deserves at least one person who understands.
• Volunteer. There are a variety of ways to volunteer in the cancer community. 

Be kind to yourself and others.
Don’t waste the time you have feeling guilty.
You have the right to be happy.