Life After Breast Cancer: The Journey Forward
Medically reviewed by Faith Selchick, DNP, AOCNP
One day you’re in active treatment for breast cancer, and the next you’re not. You might feel an immediate sense of relief and gratitude that you’re still here and the worst may be over.
At the same time, side effects from treatment are still with you. Healing takes time. And because there’s a risk of recurrence, medical appointments still populate your calendar. You may have expected to feel “normal” at this point, but it’s not happening. Not physically and not emotionally.
Because the initial focus is on treatment, the aftereffects can come as quite a shock. You may worry about living up to your own expectations and the expectations of others. If you’re stuck in a foggy gray zone after completing treatment for breast cancer, you’re far from alone.
While everyone’s experiences are different, this article will cover some common challenges of life after breast cancer.
Lasting physical effects of treatment
Depending on factors such as the type of breast cancer and stage, your treatment may have involved:
Each of these comes with its own set of potential short- and long-term side effects.
Dr. Yuri Fesko is an oncologist and senior medical director of oncology and pharma services at Quest Diagnostics. He told Healthline that side effects can develop months or even years after treatment ends.
“What side effects patients experience can depend on the type of treatment they received,” he says.
According to Fesko, some common crossover effects after breast cancer treatment include:
- changes in the look and feel of the breast after surgery
- joint and muscle pain
- loss of bone density
- early menopause or menopausal symptoms
- low sex drive
- weight gain
“It is worth noting that each patient’s experience is unique, so even if two individuals share the same diagnosis and received the same treatment, how their bodies cope and the side effects they experience or are impacted by can be completely different,” says Fesko.
Fesko recommends developing a survivorship plan with your care team that includes:
- information on your treatment, including specific diagnosis and tumor characteristics
- treatment specifics
- any ongoing monitoring (screening and diagnostics)
- potential late side effects
- follow-up care guidelines
- support services
“Understanding the potential effects of treatment and knowing what to do about them can help ease anxiety,” explains Fesko.
Lasting emotional and mental effects
A 2018 review of 60 studies suggests that when compared with women who have never had cancer, breast cancer survivors have an increased risk of:
“The combination of both physical and emotional effects can impact overall quality of life,” says Fesko. “There are support groups and other tools and resources available to help patients navigate and manage these side effects, too.”
Fear of recurrence
Anyone who has had breast cancer has some risk of recurrence. A person’s level of risk depends on factors such as the specific type of breast cancer, stage at diagnosis, and type of treatment.
After treatment, your doctor will set up a screening schedule and educate you on symptoms of recurrence. Depending on where the cancer recurs, these symptoms may include:
- weight loss
- bone pain
- new lumps or swelling
It’s important to be aware, follow the screening schedule, and report new symptoms. But for some people, thoughts of recurrence can become overwhelming.
Dr. Anita Johnson is chief of surgery and leader of the Women’s Cancer Center at Cancer Treatment Centers of America (CTCA) in Atlanta. Johnson told Healthline that fear of recurrence is nearly universal among cancer patients.
“It’s driven by a range of factors, including the predicted risk of recurrence, young age, and psychosocial adjustment following treatment completion,” she explains.
“At the mild end, patients may experience occasional thoughts about cancer. But in moderate to severe levels, they may suffer from the inability to control more frequent thoughts of recurrence, causing intrusive distress to daily life and feelings of hopelessness and despair,” says Johnson.
Managing fear of recurrence
A 2018 reviewof 19 randomized control trials suggests that mind-body techniques can help reduce fear of recurrence. These include:
Maintaining a support network
For some people, connecting with others is different after breast cancer.
Cathy Angel was diagnosed in 2015. She told Healthline that unless someone has experienced it, they don’t understand.
“Even some cancer patients and survivors have different experiences and need different types of support. I had to give grace to those who didn’t know what to say, or how to help,” she says.
“Losing my hair and breasts was so hard, and some make light of it with comments like, ‘At least you get new boobs’ or ‘At least you don’t have to fix your hair. You can wear a wig or scarf.’
“You have to accept that people may not say the right things, so that’s where grace comes in,” says Angel.
Whether it’s a breast cancer support group or just connecting with friends and family, Angel believes you should surround yourself with the people who bring you the most peace.
Finding support services
No matter how long it’s been since you finished treatment, you can still seek support services. Here are a few places to start your search:
- American Cancer Society
- Bezzy BC peer support community
- National Cancer Institute
- Susan G. Komen Foundation
Achieving realistic positivity
Breast cancer is highly treatable in its early stages. For people with advanced breast cancer, treatment goes on indefinitely. And no matter how many pretty pink bows you put on it, this disease takes at least 42,500 U.S. lives each year.
In addition to physical and mental long-term effects, survivors may be left with significant financial pressures from lost income and medical bills.
That’s a lot to process.
As you grapple with these issues, maybe you’ve been told to be “grateful” that it was breast cancer rather than a “worse” cancer. Or maybe you’ve been assured that a positive attitude is all you need to “beat it.”
Good intentions, perhaps, but statements like these can feel dismissive. They’re best taken with a grain of salt.
You had cancer, but you’re so much more than that. And ready or not, life’s other challenges keep coming. That means you still get to feel — and express — the full spectrum of human emotions.
You can have a positive outlook, yet occasionally feel sad, angry, or frustrated. It’s not necessary to deny or mask those feelings.
It’s all about a healthy balance.
The bottom line
While some challenges are almost universal, your post-treatment experience is unique to you and your individual circumstances.
Treatment itself can be demanding. Post-treatment life can be demanding in an entirely different way. There’s no “right” way to feel about it.
If you do have long-term side effects or trouble acclimating to life after breast cancer, know that it’s not your fault. It’s not at all uncommon, and you don’t have to deal with it alone.
Your healthcare team can help with the lingering physical and mental effects of breast cancer treatment.