For many cancer survivors who fought their way through a traumatic diagnosis and years of treatment, being deemed "cancer free" is hardly the end of the story. The mental and emotional fallout -- and the eventual return to normalcy -- amounts to its own uphill battle, and patients often feel unequipped to deal with it.
Mountain View resident Kimberly Bailey, who was diagnosed with breast cancer in 2013, recalled how two years of cancer treatment and reconstructive surgery completely shook up her life, leaving her depressed and lost as to what to do next. Bailey said she felt alone in the immediate aftermath, and like something was wrong with her: Why wasn't she able to get on with her life?
"For the first year it was like, 'Wow, what happened?'" she said. "It's almost like you went through a tornado, and you're left wondering what do you do now."
To help people like Bailey, a San Jose-based cancer support group called Cancer CAREpoint launched an eight-week workshop for cancer survivors to meet with one another in small groups and learn to rebound back into a fulfilling post-cancer life. The program, "Surviving Cancer: What’s Next?" kicks off inside El Camino Hospital Cancer Center later this month.
Each day of the program tackles a different topic cancer survivors have to face in order to make a true recovery from the disease. One night focuses on social changes, family roles and the false expectation that cancer survivors can simply jump back to what they were doing before treatment. Another directly addresses tough philosophical questions, like why cancer survivors who exercised, ate healthily and took care of themselves got the terrible disease.
Although cancer patients have to undergo a harsh treatment regimen that leaves many feeling sick and weak, finishing the treatment and losing that medical support network can be the most frightening part of all, said Sheryl Brown, a Mountain View resident who is director of operations and programs at Cancer CAREpoint. As a three-time cancer survivor, Sheryl said it's difficult to suddenly lose a medical team that used to constantly monitor your health, and have friends and family members who no longer want to talk about cancer and expect you to move on. Anxiety can also set in, making every headache feel like the cancer could be coming back.
"One of the things that makes me crazy is when people are done with treatment they ring a bell, staff cheers and you walk out," Brown said. "You're thinking 'Wow, why are they so excited? I'm terrified.'"
Even 20 years out from her cancer treatment, Brown said she still carries around some of that emotional baggage, which is why getting cancer survivors together to validate their concerns and talk to one another is so important. The same 12 to 16 cancer survivors meet with a mental health professional once a week, with each night's conversations guided by an accompanying book called "Picking Up the Pieces."
For Bailey, the name of the book pretty much captures what she was going through at the time.
"I said that's right, I do need to pick up the pieces, and I don't know how to do that by myself," she said. "It was really perfect timing, it was exactly what I needed."
Cancer survival rates have gone up in recent decades, making it increasingly important to understand the mental and emotional aftermath of cancer and the mood disorders that might come with it. A 2013 study published in The Lancet Oncology found that 17.9 percent of cancer survivors -- and their spouses -- suffer from anxiety, higher than the 13.9 percent among the general population. Many of those cancer survivors suffer from anxiety several years after remission.
Bailey said that going through cancer amounts to a traumatic experience, and like any trauma it can "kick back up" all over again. Even though her cancer has gone into remission, the return trips to the hospital to verify it hasn't come back can breed paranoia and make it difficult to move forward.
"You go through everything and get that crazy feeling that it might come back," she said.
It's very difficult to move on, said Monica Hite, clinical manager of outpatient oncology at El Camino Hospital. After treatment, cancer survivors still have to come back to the hospital for surveillance -- check-ups to see if the cancer has come back -- and possibly also for reconstructive surgery. Patients may also suffer from lingering side effects from treatment.
That difficult transition goes beyond the medical setting, Hite said, as patients figure out how to return to the workforce, and learn how to talk to their children and spouses about what's next.
"If you have your appendix out, your life can go on. This is a completely different mindset," she said
El Camino Hospital's new cancer center, which opened its doors in 2015, includes a multipurpose "healing space" designated for support groups like Cancer CAREpoint as well as recreational activities -- a tacit acknowledgment that mental health during and after cancer treatment is part of the healing process. The space is also used for yoga, meditation, massages and relaxation classes.
Bailey said she relies on painting in order to better understand her journey through cancer treatment, and has since taught classes to help people express themselves through art. The goal isn't necessarily to create a masterpiece, she said, but to use art as a means of expression. She said she still goes back to the workshop's book, and to this day, she still meets with friends she made in her group.
"It really allowed me to feel normal and realize, 'Okay, I'm not the only one who feels this,'" she said. "It was like the light at the end of a very dark tunnel, to be in a group with many other women who were experiencing the same things I was feeling."
El Camino's workshop series is scheduled for 6-8 p.m. on Tuesdays from Sept. 26 to Nov. 21. The program is open to cancer patients regardless of the type of cancer, where they received care or how long ago they had treatment. Anyone interested in joining should contact Denise Garlick at 408-402-6611 or [email protected]