SISTERS, Ore. — In her first year of recovering from breast cancer, Carol O’Bryant, of Bend, was plagued with anxiety over whether the disease was really gone and whether it was coming back.
Maybe the doctors didn’t get it all, she thought. Maybe it had spread and they didn’t realize it. And what if she found another lump?
“I talked to my husband about it and I said, ‘I don’t like this idea of almost living in fear that it’s going to come back,’” said O’Bryant, 59.
Feelings like that are common among cancer survivors, especially breast cancer. A recent study in Journal of Clinical Oncology found that 42 percent of breast cancer survivors — more than any cancer group — reported experiencing psychological distress during the recovery, such as anxiety or another mood disorder.
That’s why experts stress the importance of talking to other survivors. But none of O’Bryant’s friends or family members had ever had breast cancer. She found a couple people to talk to at work, but never joined any support groups.
On a recent weekend, approaching the four-year anniversary of her diagnosis, O’Bryant took part in her first group therapy sessions.
The trip was disguised as a fishing retreat, but for O’Bryant, the real reward was that of any good group therapy: learning the 13 other women she was with — all from Oregon — feel just like she does.
“A lot of them have the same feelings, emotions and most of all, our biggest thing was we survived,” she said. “We got through it and we’re here, just enjoying life.”
Casting for Recovery is a national nonprofit organization that takes breast cancer survivors on weekend-long fly fishing retreats. The goals extend well beyond teaching the women to fly fish, though. They hold group therapy sessions and pamper the guests with fancy meals and lodging (all free).
The group has hosted roughly 500 retreats nationwide for more than 6,500 women. This retreat took place at Black Butte Ranch near Sisters, a scenic spot where Black Butte towers overhead, snow-capped mountains gleam in the distance and horses graze nearby. It’s the second annual retreat held at the ranch.
According to Casting for Recovery, 70 percent of the women who attend the retreats have never been to a support group. Karen Kreft, a 52-year-old Sisters resident who volunteered as a Casting for Recovery instructor for the past two years after going on the retreat herself in 2010, said many women don’t have friends or family members who’ve had breast cancer.
“You might be the only one who’s had it,” she said, “but when you get in that group, all of a sudden, you’re all the same. I think that’s very, very important. You hear from people that their treatment was worse or better or they’re struggling with something worse. You’re not alone.”
Susan Hedlund, manager of patient and family support services at Oregon Health & Science University’s Knight Cancer Institute, has hosted dozens of retreats for breast cancer survivors with organizations other than Casting for Recovery.
Breast cancer survivors in particular are faced with issues other people might not understand, she said. The anxiety O’Bryant described is common. Some women are miffed by the fact that they did everything right — ate well, exercised, managed stress — and got cancer anyway, Hedlund said.
Body image issues are very common. O’Bryant, who has always tried to stay fit and look good, was unhappy with her appearance after her lumpectomy.
“My daughter said it looks fine,” she said. “I’m like, ‘You may not think it looks that bad, but in my head, I’m looking at myself going, ‘That looks really bad.’ I just think a lot of that does have to do with just your mental image of how you look. That translates into how you feel.”
O’Bryant underwent reconstructive surgery last year.
Breast cancer treatment also can trigger accelerated menopause in younger women, which brings on a number of changes, from decreased libido to pain during intercourse, Hedlund said. On top of that, women who’ve had mastectomies, a procedure in which all of the tissue is removed from the breast, experience a loss of sensation, she said.
“I think there is just all this soul searching that goes on around ‘Who am I now?’ and ‘How has cancer changed me?’ ‘How has it not changed me?’” Hedlund said. “Yet what I find with retreats is that people also find kind of a renewed sense of priorities and purpose.”
When it comes to fly fishing, there’s a physical benefit, too, Hedlund said: that rhythmic arm motion fly fishermen make while casting is similar to the therapeutic exercises doctors prescribe to breast cancer survivors.
Women who have had mastectomies can later get what’s called a frozen shoulder, stiffness and pain in the shoulder, she said. If they’ve had lymph nodes removed, a common practice to determine whether the cancer has spread to the lymph system, women can get lymphedema, a blockage of lymph fluid that causes swelling in the arms.
To prevent those ailments, physical therapists often prescribe exercises designed to keep the arms moving and maintain a range of motion in the shoulders, Hedlund said.
But those who are early into their recoveries might have a more difficult time fly fishing, as survivors who’ve had mastectomies, lumpectomies, radiation therapy or lymph nodes removed often say it’s difficult to raise their arms above a certain point for some time afterward.
Kreft, who has been a fly fisher for 20 years, said right after her double mastectomy, she couldn’t even lift a shirt over her head. She could only fish for about 20 minutes at a time before it started to hurt. With time, though, fly fishing helped her build strength.
At the recent weekend retreat, Friday and Saturday were a mix of group therapy, including working with the staff psychosocial nurses, and fishing lessons, where the women learned everything from casting to fly tying.
Sunday began with a group breakfast, where the women chatted and laughed like old friends.
“You have 14 ladies that don’t know each other on Friday and by Sunday, you would think they were all in the same sorority together,” said Scott Humphrey, a Portland-based volunteer who helped coordinate this year’s retreat.
Then the women suited up in waders and fishing boots, took a group photo and then spread out along the perimeter of the ranch’s calm, sun-bathed pond in 14 pairs of teachers and students.
Standing on the shore with her instructor, O’Bryant grasped her fishing pole in one hand and her line in the other, slowly flicking the rod back and forth over her head.
Lots of survivors describe life after the disease as a sort of transformation, and new hobbies are often part of that. That’s the case for O’Bryant, who said she plans to have the other participants visit her in Bend to do some fly fishing.
“It kind of feels like a new beginning,” she said, “and I think fly fishing is something I’m just really going to enjoy doing.”