"Whenever I read about anyone dying of breast cancer, I take it personally," says Jami Bernard, a New York film critic who battled breast cancer successfully in 1996, then wrote Breast Cancer: There and Back to help other women facing the disease.
"I heard that Linda McCartney died of breast cancer, and I immediately thought, 'I'm in trouble.' Whenever I get some sort of ailment, I always think it's related to cancer. I was lying in bed one night two weeks ago, and my throat hurt, and I thought, 'Oh, I have throat cancer.' It goes away quickly, though."
Most women were just walking along, living their lives, when they were blindsided by breast cancer. Unless you had a strong family history of the disease, you' probably said, "I never thought it would happen to me" at least once. But after treatment, now that you've learned in a very painful and immediate way that it can happen to you, you may find yourself overwhelmed by fears that it will happen again.
"Fears of recurrence are very common," says oncologist Marisa Weiss, MD, founder of Breastcancer.org and the author of Living Beyond Breast Cancer. "They're particularly persistent as you're first leaving active treatment, when you go from seeing an oncologist of some kind every week or every other week to checkups every three months, and then every six months. You may expect that you'll want to throw yourself a party on your last day of chemo or radiation, only to find that you're a little melancholy or fearful, thinking, 'Maybe I should be getting more treatments just to be sure?' "
"Treatments keep you busy and occupied and they take a long time," says Bernard. "When you finish treatment you're at loose ends, wondering if it will come back. I was having six-month checkups, and then my oncologist said, ''I'll see you in a year.' I said, 'What? Are you sure you don't want to see me before then?' I told him I'd start camping out in the hall waiting for appointments. You want to think that someone's still watching."
So how do you handle these fears? First, understand that what Weiss calls "separation anxiety" is normal. "It's hard to shift back to a life where treatment is less in your face than it was before," she says.
Next, give yourself -- and your treatment plan -- credit. "You worked so hard to identify a plan of action and worked so hard to make it happen," says Weiss. "At the end, you have to stop and give yourself credit for what you've just achieved, then pause and shift to a different phase in your life: surveillance." You're still being watched, she reminds her patients -- the intervals are just a little longer.
By talking about her fears, Jami Bernard is already taking action to cope with them. She has also joined a support group for women with breast cancer, where she can talk about her fears and hopes with other women who understand what she was going through. If you're not as comfortable with in-person support groups, online message boards at sites such as WebMD or Breastcancer.org are safe places to chat with women going through the same post-treatment worries. Other approaches that have helped some women control recurrence fears are mind-body exercises like yoga and tai chi, meditation, and keeping a journal.
Expect that you'll second-guess yourself along the way. Maybe you heard a news story about Elizabeth Edwards having chemotherapybefore surgery, and found yourself thinking, "Why didn't my doctor recommend that to me?" Remember, you don't know everything about someone else's breast cancer. The woman next to you in the waiting room may seem like she has a very similar type of disease, but there could be factors you don't know about that make you very different.
"Everyone feels sold on their own treatment approach, so when you talk to someone else about what they did, you'll pick up on that vibe," says Weiss.
Will there ever be a day that you don't think about breast cancer, or worry about it coming back? Yes, says Bernard. "It does recede. Eventually there were whole days when I didn't think about it," she says. "Time is a healer in that sense."
Gina Shaw is a medical writer who was treated for breast cancer in 2004, and now calls herself a "joyful breast cancer survivor."