Breast CancerSurvivorship

Starting Your Survivorship at the Time of Diagnosis

These tips from a veteran oncology nurse will help you to thrive after a cancer diagnosis.
October 2021 Part 3 of 3 – Breast Cancer Special Issue Series
Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
Editor-in-Chief, Journal of Oncology Navigation & Survivorship®; Co-Founder, Academy of Oncology Nurse & Patient Navigators® (AONN+); University Distinguished Service Professor of Breast Cancer, Professor of Surgery, Johns Hopkins University School of Medicine; Co-Developer, Work Stride-Managing Cancer at Work, Johns Hopkins Healthcare Solutions
Breast cancer survivor

That sounds odd, doesn’t it? Starting survivorship when you receive a diagnosis? Doesn’t it sound like putting the cart before the horse? Many times, people think that survivorship starts once you are done with treatments. But really, your survivorship starts now.

The fear people experience after receiving a cancer diagnosis causes them to ask their oncology team to help them just survive. I want you to know, you should expect more than to just survive; you should expect a good quality of life, too, with the ability to still reach life goals. To make this happen, you need to proactively advocate for yourself. Begin by discussing strategies to minimize the possible side effects caused by treatment with your oncology team, especially your nurse navigator.

Planning Treatment Dates

For many people, a good quality of life includes participating in activities they enjoyed prior to a cancer diagnosis. This is possible—with a little planning. You may want to consider scheduling your treatment dates in a way that accounts for the possibility of side effects. Your nurse navigator can tell you when side effects are expected to occur, and then the two of you can plan accordingly. For example, let’s say you have book club meetings on Tuesdays. If you receive a chemotherapy regimen that causes side effects 2 days later and usually last for 2 to 3 days, you might consider having treatment on Thursdays, with potential side effects occurring on Saturday and Sunday, and possibly Monday. You might find that this schedule allows you to participate in your Tuesday book club.

Planning for Milestones

Do you have significant milestones coming up over the next year? A daughter’s wedding? A grandson’s graduation? A 25th wedding anniversary? Don’t allow these to be forfeited to cancer. Provide the dates of these events to your treatment team so they can plan around these special events. It is absolutely possible to plan your treatments around an event so that you stay compliant with treatment guidelines and still attend—and enjoy—milestone events.

Share Your Life Goals and Joys

Sharing your goals and joys with the treatment team is important. For example, maybe you are passionate about your career, and you want to create a treatment schedule that still allows you to work. Share this information with the treatment team so they can help you to attain your goal.

Perhaps your passion is playing the piano. The treatment team should know this because there are certain treatment drugs that can cause peripheral neuropathy—numbness, pain, and tingling in your hands and feet. There may be interventions to help reduce your risk of developing neuropathy and keep you tinkling the ivories.

Palliative Care

Palliative care is a term that is often confused with hospice care. Palliative care is NOT hospice care, nor does it mean you are “giving up.” Palliative care includes interventions that restore a person’s quality of life. If you discover that you have severe symptoms or side effects from treatment that impact your quality of life, palliative care can help to restore it.

Life, Restructured

You may begin to view your life differently after a diagnosis. What was important to you before may not be as important now. You may begin to think about how you want your “new normal” to be. Do you want to spend more time with your grandchildren? Do you want to work part-time so that you can have 1 day each week to take classes at a local college? Some survivors form new meaningful relationships; others let go of current relationships. It is not uncommon for a cancer diagnosis to alter the trajectory of a survivor’s life. My advice is to take inventory of your life, create your new normal, and embrace your newly restructured life. Your survivorship starts now.

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Last modified: October 12, 2021

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