“Magee is in such a strong position to be on the forefront of issues pertaining to survivorship partially because of advances in breast cancer treatment.” Judith Herstine
After months of surgeries and treatments, most oncology patients are relieved when they hear the words, “You’re cancer-free.” But their journey doesn’t end there. “The transition from treatment to follow-up is stressful for almost everyone,” says Beverly Barkon, PhD, a two-time cancer survivor, patient in the Magee-Womens Cancer Program, and professor at Carlow University. “You lose the security of ongoing treatment, the relationship with your doctors and nurses becomes less intense, and you’re gearing up to re-enter the life space that you had before. There are a lot of issues that arise.”
Better research leads to more survivors
As research and clinical outcomes advance, more cancer patients are surviving the disease and adjusting to life after cancer. In response, Magee-Womens Hospital of UPMC created a program for women’s cancer survivors that is not found at many other institutions. “Magee is in such a strong position to be on the forefront of issues pertaining to survivorship partially because of advances in breast cancer treatment,” says Judith Herstine, program administrator of the Magee-Womens Cancer Program. “Because we can focus on breast and gynecological survivorship issues, we’re able to develop a level of expertise that’s rare.”
“Many metastatic breast cancer and recurring ovarian cancer patients are living long, long lives,” Herstine continues. “Are they survivors, or patients? They’re both. We need to continue to get better at addressing their needs.”
LiveWell Survivorship Program
Founded in 2010, the LiveWell Survivorship Program of Magee- Womens Cancer Program of UPMC Hillman Cancer Center is a multi-pronged initiative that helps women survivors of gynecological and breast cancers. At the close of treatment, all patients discuss a Survivorship Care Plan with their physician. This plan is a summary of treatment going forward including what tests to take, healthy lifestyle recommendations, and contacts for particular scenarios like mental health issues.
“For many survivors,” says Dr. G. van Londen, medical oncologist and director of the Center, “the biggest struggles are with aches and pains, sexual dysfunction, and mood problems. If we help them with those, we help them stay the course with regard to medication they may be taking.”
“Patients often feel misunderstood. People around them think ‘Hey, you’re done with treatment; pull yourself together. Move. But it’s like a tornado spit them out and they’re sitting on the floor with their eyes spinning thinking ‘what did I just go through?'” Dr. G. van Londen
Through the Program, survivors can access physical therapists, nutritionists, peer support groups, a dedicated patient navigator, social workers to help with financial and logistical issues, and psychological help through a highly-regarded psycho-oncology program.
Emotional support brings hope
Jennifer Wilburn survived an advanced stage of triple negative breast cancer and has been cancer-free for almost 12 years. But it hasn’t always been easy. “Life after cancer can be difficult,” says Jennifer, “I still deal with neuropathic pain from my surgery that feels like the worst sunburn of your life and I also have lymphedema concerns.”
Jennifer has been a longtime member of a cancer survivor group and regularly attends Magee’s survivorship events. “The biggest thing the groups provide is hope. You never really get over the fear that the cancer could come back. But meeting women who have gone through cancer multiple times and are still here today, that really can be reassuring,” says Jennifer. Another benefit are the experts who present at the events. “Knowledge is power. I’ve learned a lot from speakers who talk about lymphedema, pain management, and other survivorship issues.”
Keeping the momentum going
As important as it is to educate the patients, it is also important to educate the physicians and providers about survivorship as well. “Magee is ahead of the curve in terms of having care providers who understand survivorship and really advocate for survivors within the institution,” says Dr. van Londen. “I think we’re leading the field, but we need to keep this momentum going.”
Magee is also well-positioned for survivorship research. “We’re doing a randomized study that looks at the benefit of personal training sessions,” says Dr. van Londen. “We know that re-engaging in exercise can help patients feel more in control, but often they’re wary.”
The best part of the survivorship groups for Jennifer? Her friendships and giving back to other survivors. “I’ve made some wonderful friends,” says Jennifer, “When someone new joins our group, I try to share my story with them. And I tell them that we are really lucky to live in a city that has all of these resources for us.”