You’ve reached a milestone in your breast cancer care. Active treatment to get rid of the cancer is done. Maybe you even “rang the bell” with family, friends, and your medical team looking on to celebrate your big moment.Depending on your diagnosis and choices, you may have soldiered through treatment like surgery, radiation, and chemotherapy. No doubt you’re relieved, but maybe a bit nervous, too. “Now what?” you may ask. “Am I a breast cancer survivor? Could it rear its ugly head again?” “That’s a question that lives in your head 24/7. The anxiety is always there,” says Keneene Lewis of Marietta, GA, who was diagnosed with breast cancer in 2019. Lewis had aggressive treatment including surgery and months of chemotherapy and radiation.What Is Breast Cancer Survivorship?
The exciting news is that most women successfully treated for early breast cancer will be done with it for good. But that’s not everyone, and the definition of “survivorship” means different things to different people, says Jean Sachs, the CEO of the national nonprofit organization Living Beyond Breast Cancer in Bala Cynwyd, PA.
It hinges on a few things, she says. “When you get to survivorship depends on what kind of diagnosis you’ve had, how aggressive the disease was, and how much preventive treatment you might be on.”
The most common breast cancer subtype is estrogen receptor positive. “Even when your active treatment is over, you’re most likely going to be on hormonal therapy for at least 5 years and potentially 10. It’s a pill, so you won’t be going into the hospital, but it does come with some side effects.” You’ll see health care providers to look out for those.
If you still have your breasts, you’ll need mammograms and possibly other scans to keep an eye out for the cancer coming back. Some people find even walking into the hospital again is traumatic, Sachs says.
“I think in the first year after primary care is over, every ache and pain makes people worried,” she says.
Breast Cancer Survivorship: Take Care of Yourself
One way to regain a sense of control is to take steps that improve your quality of life after breast cancer treatment, Sachs says. If you haven’t made healthy lifestyle changes already, now’s the time to start:
Exercise. Ask your doctor how much you can do. In cancer survivors, exercise can:
- Prevent it from coming back
- Help with fatigue and pain from previous treatment or your current medications
- Improve your mood and sleep
Those are just a few of the benefits of moving. Start slowly, but try to work up to at least half an hour a day, 5 days a week.
Keep a healthy weight. You may have lost or gained weight during breast cancer treatment. If you need help to get to a healthy weight, talk to your doctor. Nausea or pain can affect your ability to eat. Your care team may refer you to a registered dietitian who can help you tip the scales in your favor.
Stop smoking. Lighting up can pave the way for recurrence or increase your chances of getting another type of cancer. Plus, quitting improves your overall health. Talk to your doctor if you’re having trouble stopping.
Limit alcohol. Talk to your doctor about what’s safe for you. Some doctors say no more than two drinks a week, while others say cut out booze altogether.
The bottom line is: “Try to get back to what you love, whether that’s yoga, meditation, travel … whatever,” Sachs says. “But some women don’t feel that well after active treatment, so (survivorship) is complicated.”
The Emotional Side of Survivorship
Beyond the physical, there’s often a flood of emotions that comes with survivorship.
“We find that some women embrace it. From the moment they ring that bell, they feel like a survivor,” Sachs says. For other women, the end of active treatment is sometimes harder than when they were diagnosed.
“They start to metabolize everything that’s happened to them. Up until now, they’ve been in response mode. Now they feel like they’re not doing anything to fight cancer,” Sachs says.
Lewis agrees. “When I finally rang that bell – after I completed all of the active treatment and started tamoxifen (a hormonal therapy) – that is when I went into a deep, dark depression. All of the feelings and all of the thoughts that nobody told me I should have, could have, were OK to have, hit me like a flood,” Lewis says.
Katherine Hovde of Philadelphia finished active treatment for stage I breast cancer in April 2022. She agrees that it takes time to process what you’ve been through.
“Other people in your life may say, ‘It’s great, you’re done! Now it’s time to move on.’ Some people may feel that way, but not everyone does,” Hovde says.
Old Scars, Raw Emotions
Once you begin your preventive treatment, the collateral damage of cancer and its treatments often is still there. You may have physical scars, nerve problems, weaker bones, lymphedema (swelling), and more.
The scars are more than what you see every day in the mirror, Lewis says. Cancer “is a scar on your heart, a scar on your brain, a scar on your life.”
The disease touches even the most private parts of life. New relationships may be hard to get off the ground. It’s often difficult to decide what you want to share – and when – with a potential partner.
Lewis, a single mom, says she puts it all on the table from day 1. Some men might not want to deal with her challenges and differences – like scars and the fact she needs to take medication for years to come. “I’d rather know right away than 7 months later, when I care.”
Old relationships can change, too. You may not feel or look like your old self. Your hair may not grow back. “Your chest may be flat, or one boob goes one way and the other goes the other,” Lewis says. Perhaps sex is painful now or you have fertility problems.
Find Your Village
Needless to say, survivorship has its unique challenges. So what can you do to help yourself?
Even if you have the most loving family and friends around you, you need to find people to connect with who understand what you’re going through.
Lewis is now a support services coordinator at Living Beyond Breast Cancer. She fields questions from people and guides them throughout their cancer journeys.
“We want you to know you’re not alone,” she says.
Find a support group that fits your needs. That may be older people, younger people, LGBTQ+, men who have had breast cancer, and the like.
Lewis suggests these ways to find a group:
- Ask your health care providers or local hospital.
- Talk to people at the imaging center.
- Search online.
- Contact your health insurance provider.
Find one where you feel seen, heard, and have shared experiences deeper than just being diagnosed with cancer. Lewis belongs to a group made up of women of color. “All of us talk about the moment we joined the group. It felt like a hug – a literal one and an emotional one, too.”
Find an understanding therapist. “Cancer makes you deal with the stuff you’ve put in the back of the closet,” Lewis says. “Maybe it’s childhood or adult trauma. It all comes out.” And it can be hard or impossible to share these vulnerabilities with your family. “I don’t know anyone who’s gone through cancer who doesn’t have a therapist,” she says.
Consider advocacy. Breast cancer advocates give back by raising awareness, fundraising for research, supporting other people with cancer, and more.
Why did Lewis choose advocacy? “I wanted to make sure another woman’s journey was as good as mine, but better. I want others to know from the beginning that support is there. They can learn about resources, options, and what questions to ask.”
She never misses an opportunity to advocate. “I talk to people at the airport, in the bathroom at Walmart, in the parking lots.”
“This is my way of beating cancer,” she says. “I now call myself “Keneene 2.0.”
Reset Your Clock
Hovde is a volunteer at Living Beyond Breast Cancer and considers herself a survivor. She says cancer has shined a new light on her life.
“I was diagnosed with breast cancer at 60 years old. I felt great, was in good shape, and had just sent my youngest child off to college. I said to myself, ‘60 is not that old.’ Then whammo! I really don’t feel that way anymore. Life is not indefinite.”
Now she has a greater appreciation of time and what she does with hers.
“Life is precious, and my tolerance for B.S. has definitely diminished!”