Lisa Iannucci, a writer from Hudson Valley, NY, recalls her initial feeling of elation after completing treatment for triple-negative breast cancer in 2018. But it didn’t last. She didn’t expect that to happen because this wasn’t Iannucci’s first encounter with cancer. She was successfully treated for thyroid cancer in 2001 and didn’t experience any lingering anxiety. But treatment for thyroid cancer isn’t usually as intense or as long as it is for breast cancer. So it isn’t surprising that this happened to Iannucci. She admits that her feelings after breast cancer treatment caught her off-guard. “You think that you’re going to be excited when your treatment ends. But you’re scared.”
All of a Sudden, You Feel Alone
There’s no doubt: Going to the clinic for cancer treatment is stressful. But once you’re there, people check on you and take care of you, Iannucci says. This gives a sense of comfort as you go through the process. But when the treatment ends, that comfort ends, too, and worry can go unchecked. What Iannucci describes is a safety net provided by the cancer support team. When treatment is over, this safety net is gone.
Up to half of breast cancer survivors worry that their cancer may return. For many, it goes beyond worry, and the fear can be huge, leading to increased stress and anxiety. The loss of regular contact with the treatment team definitely plays a role in this. “That feeling was very intense for me,” Iannucci says. Her oncology checkups were set every 3 months for 5 years, moving to every 6 months after that. “I was afraid to go to 6 months,” Iannucci says.
After Donna Deskin, a retired administrator in Montreal, Canada, finished her breast cancer treatment at the end of 2019, her care went back to her general practitioner (GP), who orders her mammograms and keeps an eye on things. “I wouldn’t say [life after breast cancer] is frightening for me, but it is more disconcerting,” she says. “I’m nervous when I go for the mammogram and I’m tremendously nervous when I’m waiting to make sure they got the pictures they need.” Deskin says that only calling patients if there is something that concerns the doctor about the images doesn’t help with the worry because you’re left with the unknown. “So you’re waiting and waiting, and you jump on the phone when it rings. I’ve insisted that my doctor call me, just to let me know.”
The Big Question: Is It Back?
As a breast cancer survivor, you may find yourself noticing every ache, pain, and twinge. Before your diagnosis, you might have passed these off as due to aging or overdoing things the day before. After breast cancer treatment, though, your thoughts can go deeper as you wonder whether your cancer is back. Experts say this is normal, especially in the first year after finishing treatment. Some women are so frightened that they go to an emergency department to make sure they’re OK. And of course, there are the visual reminders that can trigger stress. A study published in 2019 found that breast cancer scars result in a negative body image and affect mental health for most women. “The scars are there,” Deskin says. “Every time I look in the mirror or take a shower, they’re there.”
Posttraumatic Stress Disorder Can Be Another Unexpected Problem
Posttraumatic stress disorder (PTSD) isn’t limited to people who have been in a violent situation or witnessed something horrific. People who survive life-threatening illnesses can also get PTSD. About one-third of women diagnosed with PTSD after their breast cancer diagnosis still have PTSD symptoms 4 years later. In some cases, the symptoms get worse, even after treatment is over. Factors that trigger PTSD differ from person to person.
“I have some lymphedema in my left shoulder that causes pain in my left arm,” Iannucci says. “One night I was in bed and watching a video on my phone and I was feeling itchy. I went to rub my wrist and I felt a lump. I was immediately back where I was before.” Iannucci says it could have been just a knot in the muscle, but feeling that lump just brought the cancer fear back.
Practical Tips for a Positive Future
Constant stress can affect your physical health and keep you from moving forward now that your cancer treatment is over. So what can you do to help yourself? Here are some practical tips:
- Physical activity can be helpful. Regular exercise has many physical and mental benefits, whether you take regular walks in the neighborhood or join a gym.
- Work on a hobby you used to enjoy or start a new one. Distraction can help you refocus your thoughts.
- Try to get enough sleep. While this can be easier said than done, a good night’s sleep can help ease negative thoughts.
- Eat a healthy diet. According to the Mayo Clinic, diet can’t cure anxiety, but it can help make you feel better physically, which in turn can ease unpleasant feelings and thoughts.
- Work on relaxation reduction techniques. They can include deep breathing, meditation, and counseling.
- Socializing has many benefits, if you’re up to it. Whether you join a faith-based group, take classes, or start volunteering in your community, socializing with others can benefit your mental health.
- Medications may help. Many people don’t like the idea of being dependent on medications to help manage stress, but sometimes it’s necessary. Some people need anti-anxiety medications to get to the point where they can effectively use relaxation techniques. Some may need them longer.
- Join a support group. Whether you get support online or in person is an individual choice, but talking about your concerns with someone who understands can be invaluable.
- Complementary therapies like acupuncture, journaling, massage, and guided imagery — to name a few — may also be helpful when trying to manage stress or anxiety.
There’s no doubt about it. Post-cancer stress is real for many people. If you are struggling, don’t wait. Get help as you did when you learned you had breast cancer. If you are in serious distress, call the 988 Suicide and Crisis Lifeline.