DLCSYJ Note: The following guest blog post is written by Lillie D Shockney, RN., BS., MAS, and is based on her extensive experience working with breast cancer patients.
If you have just been diagnosed with cancer, your world may feel like it is spinning out of control. You can likely only think about cancer and nothing else. But chances are before you learned of your diagnosis, you had life goals you were planning to achieve in the future—some short-term and many long-term, even decades from now. These goals can still be part of your plan! You need to speak up and make sure your oncology treatment team is aware of these life goals. Why? So they can be incorporated into your treatment planning process. Don’t allow cancer to rob you of your life goals. You will want to still be on track for accomplishing them, rather than sacrificing them to this disease.
Identifying Your Goals is Key to Survivorship
Initially, it is common for patients to say they only have one goal “now”—to survive cancer and its treatment. This goal might be driven by young children you are rearing, or perhaps you are caring for an elderly parent or a spouse with medical needs. You may feel you have only this one goal because you are so scared. Take a deep breath. Sit down. Take your goals—all of them—seriously, and think about where you see your future, as a cancer survivor.
Most medical oncologists will discuss fertility preservation with you if you are young and of child-bearing age. But beyond that, it is common for oncologists to focus on the cancer and how to treat it, losing sight of what else may be important to you. So make a list. Here are some examples from experiences in breast cancer:
- You are up for a promotion at work—you will likely want to try to work as much as possible during your treatment, to demonstrate your commitment to the company. By informing your treatment team, steps can be taken to minimize your time off from work. This can be accomplished by planning your chemotherapy treatments so that the days following treatment that may limit you due to side effects would naturally occur when you are already scheduled to be off.
- You want to breastfeed in the future—assuming fertility preservation is already being considered, you may give more serious thought to the type of breast cancer surgery you want. For example, doing a bilateral mastectomy (that is by choice and not medically required) would steal away your ability to breastfeed. Some women are so frightened that they opt for a bilateral mastectomy when only a small lumpectomy was actually needed.
- You are an avid and competitive swimmer—the type of breast cancer surgery you receive may impact this physical activity. For example, you may not want a Latissimus dorsi flap reconstruction that would take the muscle from your shoulder blade. This also applies to women who are avid golfers.
- You are looking forward to enjoying your new grandchildren, or perhaps ones you may have in the future. Therefore, if you require a mastectomy, you may want to avoid a TRAM flap reconstruction that sacrifices your abdominal muscles, restricting you from heavy lifting.
Assert yourself and give voice to the life you want to be living after your experience with cancer and its treatment. This is your opportunity to preserve life’s goals, and now is a good time to be clear and upfront with your care team.
“Give voice to the life you want to be living”
Redefining Your Goals with Metastatic Disease
What would your situation be, however, if you learned you had metastatic disease and could not survive despite the best treatments available? Even if you are facing a terminal diagnosis, you can still achieve your life goals. They may need to be altered a bit, or they’ll need to be fulfilled in alternative ways. For example, being present to watch your 10-year-old daughter walk down the aisle as a blushing bride 10 to 15 years from now. You can still ‘be here’ by writing her a card or letter now, describing your wishes and hopes for her, sharing your motherly advice and your deep and continued love for her. You can even make a video or audio recording. By doing this, you will still ‘be here,’ just in a different way. To fulfill these goals and hopes, you’ll need to ask your oncologist for an honest timeline if possible, so you can arrange to create the appropriate items for these various milestones. Doing so requires thought and planning.
No matter your stage of diagnosis, make sure your goals are well articulated and clear. Request that they are factored into the treatment planning process.
Lillie’s Joy Tip
Identify, clarify, and share your goals with your treatment team. Give voice to the life you want to be living, regardless of your cancer! Only give cancer what is required to treat it. Don’t allow it to have any more of your time—not your personal time, social time, work time or family time. Be well.
Lillie D Shockney, RN., BS., MAS is a University Distinguished Professor of Breast Cancer, and Administrative Director at the Johns Hopkins Breast Center. A two-time breast cancer survivor, Lillie has worked tirelessly to improve the care of breast cancer patients around the world. Lillie has published several books on breast cancer and is a nationally recognized public speaker on the subject. She is the co-founder of ‘Mothers Supporting Daughters with Breast Cancer’ and is the founder and Director of the Academy of Oncology Nurse Navigators (AONN).
Your Turn!
Let’s all take a lesson from Lillie’s joy tip. What are your goals? Take a moment and write down what comes to mind. Include those that are small and easily attainable, and bigger ones too. They can be short-term and long-term. Writing them down will help give you clarity and even identify ones you hadn’t thought of.
Send us Your Joy Tip
What is your Joy Tip? We’d love to hear from you! Send along a brief story and joy tip, and we may highlight it in an upcoming blog post. Email us today at hello@dontletcancer.com.