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A Word of Encouragement

August 2022 Part 2 of 2 – Breast Cancer Special Issue Series
Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
University Distinguished Service Professor of Breast Cancer,
Professor of Surgery, Johns Hopkins University School of Medicine
Co-Developer of Work Stride—Managing Cancer at Work
Johns Hopkins Healthcare Solutions

As a breast cancer survivor, I know first-hand how terrifying it is to hear the words “you have breast cancer.” Almost immediately after hearing those words, fear and anxiety set in. Fear and anxiety—the natural companions to a cancer diagnosis. While these emotions are completely understandable, if left unchecked, they can and will negatively impact your quality of life. So, the question is, what can we do as survivors to lessen the impact of these emotions?

As an oncology nurse navigator (and a survivor), I’d like to offer advice in the hope of giving you a sense of empowerment and calm. Although my advice may seem obvious or oversimplified, I can promise that embracing a few of these strategies can help you to lessen or overcome those negative emotions. In fact, I would encourage you to think of these strategies as part of your treatment plan. In doing so, you may be able to regain some peace of mind.

Learn Everything You Can

There is power in having accurate information. I emphasize the word “accurate,” because it is so important to ensure you are gathering information from reputable sources. Start with your oncologist’s office and your nurse navigator; they will provide excellent educational resources and direct you to reputable websites so you can read and learn about this disease, the treatments, side effects, and long-term care.

I also encourage you to learn as much as you can about your particular case. Understand the type of breast cancer you have been diagnosed with, the stage of the cancer (how far the cancer has spread), and the grade of the cancer (how quickly the cancer is growing). Understand your treatment options and ask questions about what you can expect from those treatments. Understand the typical side effects of treatment so you can prepare for them. Having a clear picture of what to expect can help to ease your fear.

A Second Set of Ears

I’m sure you have heard this before, but I cannot stress enough how important it is to bring someone to your consultation who can take notes for you. When you are first diagnosed, it can be difficult to concentrate on the details of the conversation with your oncologist, let alone retain this information. Having someone you trust with you to be a second set of ears is a great idea. In some cases, you also might consider asking your oncologist if it is okay to record your conversation so you will have access to everything that was said once you are back at home.

Understand Your Risk of Recurrence

It is a very common fear among survivors that the cancer will return. In talking with survivors, this fear seems to be pervasive regardless of the stage, grade, or the suggested risk of recurrence. I have known women who worry excessively each and every day about the return of a breast cancer. They check their breasts daily and fret about every ache and pain. I know it is difficult (if not impossible) to fully and completely put your mind at rest; but allowing the disease to fully and completely steal your peace of mind is not healthy for you either.

It is a good idea to talk with your oncologist about your personal risk of recurrence and the tests they can use to determine your risk. Having accurate information from your doctor about your risk, as well as a plan to check for recurrence, may prevent needless or excessive worry.

Participate in Decisions

Your treatment team wants you to actively engage and participate in shared decision-making. Once you have a good understanding of your exact diagnosis, the treatment options, and their related side effects, you should be able to voice your preferences. You should think of yourself as part of the treatment team and then come to the decision-making table with your input. You may be surprised by how many decisions there are to make at all the various phases of treatment: whether they be related to surgery, chemotherapy, immunotherapy, radiation therapy, hormonal therapy, or if you should participate in a clinical trial. I know this may sound intimidating or overwhelming at the moment, but when you are well-educated, you will have opinions to share. I want you to know that your opinions and preferences are important and should be shared with your treatment team.

Soothe Your Nerves

Continue to do the things that you enjoy as you are able. Perhaps you can introduce some new, soothing activities to your daily life. There is value in meditation, listening to music, or reading.

Connect with Others

Other women who are going through treatment for breast cancer can be a great source of encouragement and support to you, as you will be to them. I highly recommend joining a support group—there are many options available to you. You may find a great support group through your local hospital. If you do not have a group in your area, several organizations host online groups. See the article in this issue about the Young Survival Coalition (page 9) to read about their expansive network of in-person and online support groups.

I truly hope the information provided here is valuable to you. I wish you all the best for a successful treatment journey. Most of all, I wish you peace.

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