Because of better diagnostic tests and advances in breast cancer treatments, people are living longer than ever after being diagnosed with breast cancer. Today, more than 3.5 million women in the U.S. have a history of the disease.
However, life after breast cancer can look very different from survivor to survivor. Many will face a number of long-term physical and psychosocial effects, which can vary based on the type of breast cancer and the treatments received.
“We have to accept there’s no going back,” says Vicky Scherberger, referring to life after a breast cancer diagnosis. “It’s either lemons or lemonade.”
How survivorship care plans work
Scherberger, 64, of Madison, Alabama, was diagnosed with breast cancer in both breasts in June 2016. The cancer was hormone receptor-positive and HER2-positive, which means that its growth was fueled by the hormones estrogen and progesterone, and a protein called HER2. HER2-positive breast cancers tend to grow faster and are more likely to spread and come back compared to HER2-negative breast cancers.
Fortunately, Scherberger’s treatment was successful. She was treated with a combination of chemotherapy drugs and Herceptin (trastuzumab), a medicine that targets HER2 receptors on breast cells and stops them from receiving growth signals. She must now take a daily aromatase inhibitor for five years, a type of hormonal therapy medicine that stops her body from making estrogen to reduce the risk of the cancer returning.
These days, Scherberger works at a consulting firm with her husband, Richard, and dedicates herself to an optimistic view of her life. “I want a life of thriving,” she says. “I decided I was going to be better on the other end of this experience, in every way.”
To meet the goal of remaining not only cancer-free but in good overall health, Scherberger sees various specialists as part of a “survivorship care plan” — a personalized plan for monitoring and maintaining health after a cancer diagnosis. Chemotherapy, aromatase inhibitors and Herceptin all may cause long-term effects in breast cancer survivors, putting them at higher risk of developing other diseases as they age, including high blood pressure, osteoporosis and heart disease. Part of Scherberger’s follow-up care involves regular screening for these and other diseases.
The Institute of Medicine, an arm of the National Academy of Sciences, recommended in 2006 that all cancer survivors receive a survivorship care plan after they finish treatment. Besides a summary of the diagnosis, the survivorship care plan should include a written summary of all the cancer treatments a person has had, as well as a personalized follow-up plan developed by the person’s oncologist. The plan should also recommend which doctors — oncologist, primary care doctor or other specialists — should be seen for specific follow-up care.
In practice, survivorship care plans may be less formal and initiated by patients or their caregivers. This is true for Scherberger, who credits her husband with building her current health care team.
She sees various specialists as part of her survivorship care plan. “My cardio results have improved since I finished Herceptin,” she says. She also monitors her bone density and is working with her gynecologist to maintain her vaginal health, since dramatically lower estrogen levels can affect both areas. With the help of a dietician, she also lost an impressive 53 pounds since finishing chemotherapy.
Focusing on the future
Unfortunately, not all cancer survivors have a survivorship care plan. Some research suggests that the number of cancer survivors who have these plans is below the rate recommended by national cancer agencies. This means that cancer patients may have to be their own advocate when it comes to the creation of a survivorship care plan.
“Survivorship care plans have been recommended for years, but most patients still aren’t getting them, and for those who do, they are often generic with limited relevance to their personal situations,” says Marisa Weiss, M.D., Chief Medical Officer and Founder at Breastcancer.org. “We can and must do better. The whole point of effective treatment is to give each person her best chance for survivorship. Upon completion of treatment, each person needs to know how to stick to ongoing therapies, lead the healthiest lifestyle possible, and follow a program of close surveillance. She also needs to know who to call in case she experiences lingering side effects, encounters a new problem or just has an important question to ask.”
After primary breast cancer treatment is done, it’s important to focus on what’s now most important: good health. Women have to make sure they get the best ongoing care and live their best lives.