When you are deemed a “breast cancer survivor,” most people will expect you to feel pure joy, relief, and gratitude. However, these emotions are often drowned out with other feelings, including worry, anxiety, and sadness, which are all normal. While your physical health as a breast cancer survivor is clearly important, your emotional health also matters. Below are answers to most-asked questions on navigating emotional health as a breast cancer survivor.
Lillie Shockney: This is very common. You may have been looking forward to completing treatment and having a party to celebrate this milestone, but change your mind as active treatment ends. Many women fear that they will be tempting fate by celebrating this victory and worry about their cancer coming back. While you may have felt comfortable and confident when you saw your treatment team on a more frequent basis, that confidence can drift away when you transition to fewer maintenance appointments. To help with this transition, you may find it helpful to join a survivor support group, begin seeing a counselor or therapist, or practice mindfulness and meditation.
LS: Prior to facing cancer, aches and pains may have been ignored, but diagnosis and treatment are both life-altering. You may have had no signs or symptoms of breast cancer, possibly receiving a diagnosis following a screening mammogram. Because of this, many breast cancer survivors don’t trust their bodies anymore.
If you are worrying and fretting about aches and pains constantly, are doing breast self-exams in the shower every morning, or are trying to self-diagnose any physical symptom you have, then you are not enjoying the life that was saved for you. You are allowing breast cancer to be in control. But you are in control of your body now. A good general rule of thumb is that if you experience a new physical symptom like hip pain or low back pain that persists for more than three weeks, and you haven’t done anything to explain its cause (such as heavy lifting), then it makes sense to reach out to your medical oncologist and arrange for an x-ray.
Read more about recurrence in the free Breast Cancer Recurrence eBook, written by Lillie Shockney.
LS: Many people expect life to go back to normal now that treatment is completed. They are not aware that the way you see the world now is different. You have faced mortality through this experience. Parts of your personality may change. For example, you may go from being very detail-oriented to no longer wanting to sweat the details. A cancer diagnosis may also alter your goals and expectations. You may even decide to change jobs, realizing you didn’t enjoy what you had been doing for the last decade.
Your personal relationships can also change. It is important have candid and frank conversations with family members, friends, and coworkers to tell them how your breast cancer experience has made you look at the world differently. You can tell them what you are experiencing emotionally, or how you want to embrace your life in different ways going forward. You can also let them know if you are fearful of breast cancer recurrence so they know you need support.
A conversation about these changes could start like this: Having breast cancer and experiencing all the treatment to beat it really changed my outlook. While I feel less bothered by some of the little things, I’m also really scared that the cancer will come back. Would you please support me by checking in on how I’m feeling emotionally a couple times a week? I think talking about things with you would help.
Things will not go back to how they were prior to your diagnosis. This doesn’t mean that your entire world changes, but it does mean you need to explain your life goals now, which may be different from what they were pre-diagnosis.
LS: Many patients and survivors benefit from seeing a counselor or therapist. Sometimes couples therapy is of benefit as well. Fear of recurrence is a form of post-traumatic stress disorder (PTSD), and many breast cancer survivors also meet the medical criteria for having clinical depression, which often goes untreated. 1-7
Mental health issues are starting to be focused on and prioritized locally and nationally, making many patients feel more comfortable to seek out needed services. Many cancer centers have therapists available as part of their support services, which makes it easier to find someone who has experience with cancer survivorship concerns and thoughts. I also encourage patients and survivors to practice mindfulness, meditation, and yoga. These are ways to reduce stress that have proven to be of benefit to cancer survivors.
LS: We all have life goals, though you may not think of them by that title. Some examples of life goals may include marriage and family, getting a promotion at work, or earning a degree. Some of these life goals may even be in process at the time of diagnosis.
After treatment, I encourage survivors to think about setting new life goals, such as going back to school to get a degree, reducing their work schedule so that more time can be spent with children or grandchildren, or transferring into a new position that allows for more personal and family time going forward.
Setting new goals or reframing old ones can help survivors focus on the hope their future holds, rather than on the trauma of their past diagnosis and treatment. Many survivors also find it helpful to have something to keep their mind off of recurrence.
LS: Early on in treatment, your healthcare team should explain the game plan for treatment, including when you will have imaging studies or blood work done and why, and what happens after treatment is completed. If this plan wasn’t or hasn’t been explained to you, advocate for yourself by asking what will happen when your treatment is complete.
For many patients, consistently seeing their oncologist and getting scans and blood work done is something they’ve become accustomed to over the course of treatment. When they are suddenly told that they don’t need appointments, blood work, or scans anymore (unless they develop symptoms), they may begin to panic and feel insecure. It’s important for healthcare teams to explain the plan to patients early so they are prepared for this diminished follow-up care and can mentally prepare for it.
While routine follow-up scans and blood work was the norm a few decades ago, research over time has shown that these frequent follow-ups were more harmful than helpful to survivors due to the prevalence of false negatives and the psychological impact those false results had on survivors. Therefore, the professional organizations that set treatment guidelines deemed it better to rely on signs and symptoms of survivors rather than frequent and unnecessary tests. The only exception is mammograms. Breast cancer survivors should still receive an annual mammogram unless they had a bilateral mastectomy with or without reconstruction.
LS: As a breast cancer survivor, you generally will not receive annual or semi-annual scans and blood work, and insurance won’t cover these tests unless there is a medical reason. This often makes survivors nervous, especially if you were diagnosed with Stage 3 breast cancer. But be reassured that patients who were diagnosed with Stage 3 breast cancer are usually followed closer than others since they are at highest risk of experiencing local, regional, and/or distant recurrence.
Since it’s likely you will not experience routine scans and blood work as a breast cancer survivor, it’s important that you monitor your own health and report any significant changes to your physician. A good rule of thumb is that you should report any pain, discomfort, or other symptoms you may experience for more than three weeks, that doesn’t have an explainable cause, such as heavy lifting or extraneous activity.
LS: Once breast cancer spreads (metastasizes) to other areas of the body, it is considered Stage 4 metastatic breast cancer (MBC). MBC usually occurs within the first few years of survivorship, but can occur anytime. If it metastasizes, breast cancer usually spreads to the bone, lung, and/or liver. However, bone is commonly the first location. Signs and symptoms that may be linked to breast cancer metastasis are a physical pain that lasts consistently more than three weeks and has no corresponding activity that can explain its cause, and should be reported to your doctor. For example, if persistent back pain occurs without a corresponding activity to explain it, you should contact your medical oncologist. Additionally, feeling unusual shortness of breath when climbing stairs and new onset of fatigue are also signs of possible metastasis. Prolonged abdominal pain, changes in menstruation, and changes in bowel movements may also warrant a more in-depth look by your physician.
Unfortunately, breast cancer survivors are not excluded from getting other acute or chronic diseases. Heart disease, COPD, diabetes, arthritis, and more still can happen, so you shouldn’t assume that any new symptoms can only be related to cancer.
Remember, the stage of your original cancer doesn’t correlate which how much you may worry about metastatic disease. Regardless of your original diagnosis and stage, almost all women will worry; it’s part of survivorship. But the more you can focus on other things, such as family, hobbies, and living life to the fullest—while still listening to your body—the more likely you are to decrease your levels of worry and anxiety over recurrence.
As a breast cancer survivor, your mental health after treatment ends is just as important as your physical health. Ask questions. Find a support team. Breathe deeply. Your survival journey may be different than anyone else’s—honor your path and your wisdom on your way to living emotionally healthy as a breast cancer survivor.
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