How do you define quality of life?

When a woman is initially diagnosed with metastatic breast cancer, she may  be feeling relatively well. Her first inclination is to be very aggressive with her treatment. Her doctor will probably respond by saying, “We’re going to start you off on hormonal therapy. You’ll take a pill each day. Then we’ll see what you need after that.”

Her brain goes into overdrive and she thinks, “Did he say a pill? Just a pill? Why not do chemo again? Why not radiation to where the disease has spread?” The reason is tied to quality of life, but doctors aren’t always very good at explaining it that way.

Getting the best quality of life during treatment is not only important to a woman, but to her healthcare team too. The goal when treating stage IV breast cancer is to get it under control and keep it in control for as long as possible. Hormonal therapy has fewer side effects than heavy duty chemotherapy drugs, allowing a woman to be active and continue living her life. Chemotherapy and radiation are held for a later time.

So if you are currently dealing with metastatic breast cancer, or fear that one day you will be in such a situation, think carefully about how you define quality of life. Remember that how you define it today may be a starting point. As you progress through treatment, you will reassess your quality of life definitions and expectations and redefine it as needed. It is not a stagnant thing at all. It can’t be.

Consider this a valuable exercise. Define for yourself how you measure quality of life. What are you willing to trade for more time on this earth? How will you reassess this definition for yourself and under what circumstances? Have a frank and open discussion with your loved ones about this, too. Put these thoughts to paper, remembering that you can change your mind as your situation changes. 

I’ll leave you with a personal experience of mine. I was attending a conference where research data was being presented and the discussion focused on a specific drug that had proven itself to be able to extend the lives of women with metastatic breast cancer by 3 months. One of the attendees said to me, “what good will that do a patient? It’s only 3 months.”

I was diagnosed with breast cancer in my 30s and again at age 40. Three months is, well, 90 days, 2160 hours. In that time frame, another grandchild can be born, a wedding anniversary celebrated, and many more special memories created. I am a personal believer that we need to ensure pain is managed well so those 2160 hours can be spent living.

How do you define quality of life? And how do you make sure you’re living life to its fullest? Leave us a comment or join our message boards to talk with other women living with metastatic breast cancer.

This entry was written by Lillie D. Shockney, a member of Living Beyond Breast Cancer’s medical advisory board. Ms. Shockney is University Distinguished Service Assistant Professor of Breast Cancer and assistant professor in the departments of surgery and gynecology at Johns Hopkins University School of Medicine. She is also an assistant professor at Johns Hopkins School of Nursing.

Register for our teleconference on November 5 to hear Ms. Shockney talk about living fully and making treatment decisions. Call (610) 645-4567 to register for the free teleconference or visit our website to register.

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3 Responses to “How do you define quality of life?”

  1. Lynn Says:

    I agree with the statement that getting it “under control” and keeping it there is the goal. When my Stage IV diagnosis first happened that wasn’t a clear option for me. I was not responsive to hormones, which made it even trickier. After a year of herceptin and various chemo the response was poor. I am now undergoing some pretty aggressive chemoembolozation directly to the turmors. It may, in the long haul give me more time, but I am debating whether further treatment at this quality of life is how I want to live.

    I think my definition of quality of life with Stage IV Cancer is how many memories I can make with the people I Love; My 9 year old daughter, my 21 mo old grandaughter, 26 year old daughter, husband, parents, family and the extended family I have been blessed with. Should I save that $ or spend it on the ice cream we can laugh at as it drips down our faces. Do I have the option to hold a frightened hand and smile reassurringly into her face, once more time. I’m taking them all on vacation this spring (or sending them, Lord whilling). Cashing in that useless 401K that I’ve been hovering around for years. It’s going to be a grand time. I need to show them what true Love is, not money, not hard work. It’s about time; it’s about time in prayer and reflection, time together, time in helping others be better people and know what life is about. It’s so clear now! Amazing.

  2. Franny Says:

    This is so true! I’ve been living with Stage IV breast cancer for almost 7 years now! 7 years!!!! I am thankful for every day I’m here to spend with my boyfriend, my best friend and her kids, smelling the leaves and watching the beautiful fall colors. Being on so much chemo is a real drag at times but as long as it’s working, keeping the cancer under control, I’ll get some months off to do what I want and really enjoy life before I have to start on another chemo. The important part is keeping the positive attitude, having a great medical team to support you and to enjoy your life. Just because you have cancer doesn’t mean you’re going to die, it just means that you’re more aware of how long you have to live on this planet. Stay true to yourself and take advantage of every day, even the ones when you don’t feel good. Those count too!

  3. livingbeyondbc Says:

    Lynn–you’re right in saying quality of life is about living live to the fullest and enjoying the time you spend with your families and friends. Franny you were right in saying that having cancer does make you more aware of each day, but it is NOT a death sentence. It’s important to stay focused on the positive. Thanks for your comments ladies, and we hope you’ll both tune in on Thursday to hear Lillie Shockney speak more about this topic!

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