Redefining Hope in Metastatic Breast Cancer

Sandra Spivey | Oct 15, 2019 | Stories

 

“Hope” is the desire to have something happen or to make something become true.

We hope to be in a meaningful relationship, sharing our lives with someone special.

We hope our children lead happy, healthy and productive lives.

We hope to get to a service station before the gas tank is dry.

Hope for Early Stage Breast Cancer Survivors

In early stage breast cancer, hope is about getting through treatment and eliminating breast cancer in the body.  It’s about wanting to get through therapy without too many life disruptions, eventually putting cancer in the rear view mirror. It’s about wanting to live a cancer-free life.

There are many inspirational memes for early stage breast cancer patients, messages intended to lift spirits and ease anxiety of being a breast cancer patient. For example, “Once you choose hope, anything’s possible.” – Christopher Reeve

For those living with Metastatic Breast Cancer (MBC), the hope-centered memes turn into educational messages like this: “Metastatic Breast Cancer Can Be Treated But Not Cured.”  

Is this a hopeful message?

I’ve been living with MBC since 1998. I think the message is extremely hopeful. When originally diagnosed, there were only seven therapies for MBC. Now there are over 60 with more in clinical trials.

How I’ve Redefined Hope

Hope, for me, isn’t about being cured and putting cancer behind me. 

Hope is that I will live as long as I can while experiencing a reasonable quality of life. 

I also hope that when I die of MBC, it won’t be a long, painful process, one that emotionally rips my family apart. I don’t want to be grasping for treatments when it’s clearly the end, treatments that ruin the quality of whatever time I have left. I don’t want my family to feel guilty that they could have done more.

What is realistic to hope for living with MBC? Should hope even be realistic? Or is what we hope for meant to inspire us?

Dr. Leslie Blackwell explains in her TEDxCharlottsville talk about how hanging on to hope can actually shorten and reduce the quality of life for terminal cancer patients whose bodies can’t tolerate more therapy or who have no viable therapy options. Her talk is called “Living,Dying and the Problem with Hope.” She brings up excellent points about our inability as a culture to see death as the natural conclusion of living.

What Others Living with MBC Say about Hope

I asked MBC group members on FaceBook how the concept of hope has changed for them once diagnosed with stage IV breast cancer. Here is a summary of their words:

Thoughts on Longevity:

“I cling to hope even more now. I want to live as long as possible.”

“I hope to live longer even if my quality of life is low. I want be with my kids as they grow up.”

“My hope at one time was to make it to Christmas. I’m doing much better and believe I will live to see next year.”

“I include hope as an essential part of my cancer treatment.”

Thoughts about Family:

“Hope today centers around my children. I want to do all I can now to set them up for bright futures.”

“I hope my small children remember me after I die.”

“I hope my death won’t traumatize my family.”

Thoughts on Faith: 

“I’ve turned to God as I have no hope in man or science.”

“Hope is like a thread, not a rope. However, my faith, rather than hope, comes from inside and gives me strength.”

Difficulty with Hope:

“I struggle with hope and give a fake smile when people advise me to ‘have hope.’”

“I try to balance hope with the reality of my situation. I used to hope I would be cured.”

Research:

“I hope research accelerates to the point that there will be treatment options for me that provide durable responses:  years versus months or weeks.”

“To me, hope is research to benefit the next generation.”

Other Types of Hope:

“What I hope for changes by the day, week and month. These are short term hopes like getting a good scan report or that I’ll feel better tomorrow.”

“Hope for me is the ability to wake up every day.”

“I hope to enjoy every moment I’m alive.”

“I hope I have the courage to embrace death with acceptance when my times come.”

“Hope gives me the spark to set new goals, learn new things and appreciate life.”

“Hope is the lock that keeps fear in a box. It allows me to enjoy the time I have without living in a state of constant anxiety.”

Like most things in life, hope is complicated. We view hope differently once diagnosed with metastatic breast cancer. Please avoid sharing your version of hope with those living with MBC. If you do, don’t expect to get a big “thank you.”

Hope is personal.

Learn More About Metastatic Breast Cancer