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A Fresh Look at the Survivorship Phase of Endometrial Cancer
January 03, 2019
Endometrial cancer is the most common cancer of the female reproductive organs in the United States. For 2018, the American Cancer Society estimates there will be about 63,230 new cases of endometrial cancer diagnosed and about 11,350 women will die from this disease.
Fortunately, the majority of women will be diagnosed at an early stage when the possibility for cure is high — there are more than 600,000 survivors of endometrial cancer currently in the United States.
Being diagnosed with cancer is a life-changing event. Most women with endometrial cancer we have met at the Hartford HealthCare Gynecologic Oncology Program have told us that once they hear “cancer” their life is never the same.
Almost all patients with endometrial cancer are treated initially with surgery, usually a complete hysterectomy that includes removal of the uterus and cervix, fallopian tubes and ovaries. Many women also have their lymph nodes removed to determine whether the cancer has spread.
In many cases, no treatment is needed after surgery. But some women will have radiation therapy and, in some cases, chemotherapy. Although these treatments can be effective in treating the cancer, they sometimes have lasting side effects.
Hartford Healthcare uses newer treatments to reduce the burden of treatment-related side effects. These include sentinel lymph node biopsies which, in many cases, replace more extensive lymph node surgery. This can significantly reduce the chances for women to get lymphedema, or swelling in her legs, after treatment. Also, we are primarily using localized radiation treatment called intravaginal brachytherapy to minimize the side effects from radiation while still providing effective treatment against the cancer.
Every woman diagnosed with endometrial cancer is a survivor from the time of her diagnosis. When a woman is diagnosed with endometrial cancer she goes into action mode. She sees the gynecologic oncologist and then quickly begins her treatment phase. During active treatment, the woman is busy doing what needs to be done to treat her illness.
Once treatment is complete, she will enter into the survivorship phase and things slow down. There are not as many appointments, so patients sometimes feel some anxiety about not “doing” something. Anxiety, fear of recurrence or depression may surface.
There are many questions about what comes next. How will I know if the cancer has returned? Will these side effects go away and when? There are also many psychosocial questions and issues. How do I move forward? What about going back to work? What about sexuality? How do I not think about the cancer?
Part of providing survivorship care is helping the patient explore these questions and educating them that the things they are going through are normal or part of the process of healing. Knowing you are not the only one experiencing these feelings is helpful. We are able to educate these women in methods to improve their overall health and decrease their chances of recurrence, empowering them to take an active role in their health. We explore long-term side effects and ways we can treat these or help patients live with them.
An example would be treating chemotherapy-induced peripheral neuropathy. Another example would be improving sexual function after surgery and radiation therapy. Bringing up these sensitive topics in a survivorship visit allows the patient to feel safe discussing them with their care team.
Hartford Healthcare Gynecologic Oncology began offering survivorship visits as part of our follow-up process in 2014. Our program has grown continuously since. It was initially offered at the Hospital of Central Connecticut, where we took a different approach than most of the other cancer specialties in that the survivorship visits were conducted by the APRN in the office. This allowed a unique continuity of care between the treatment and survivorship phases of care.
We have found that this works well for the patients for several reasons:
- Their care is seamless in transitioning from treatment to survivorship.
- The patient is familiar with the provider and comfortable in exploring survivorship issues.
- Easy referral to other specialists as needed.
- The providers are able to learn from the patients as we help them address their survivorship issues.
- It saves the patient from an additional appointment with an unfamiliar provider.
Because of the program’s success, it was expanded to include the entire Hartford HealthCare Gynecologic Oncology Program.
Another critical aspect of survivorship care is coordinating care with other providers especially PCP’s. A copy of the survivorship care plan is sent to the patient’s PCP. This includes the detailed treatment summary. It is important for other providers to be aware of the survivor’s cancer treatment, potential delayed toxicities, and the follow up plan so that patients receive coordinated care. The survivorship plan also identifies key issues we may be addressing and communicates any recommendations for specific referrals such as the Livestrong Program, the Quality of Life counseling program, or a referral to the pain treatment team to help with neuropathy pain.
Being diagnosed with endometrial cancer is a life altering experience and active survivorship care helps these women transition, with support, from active treatment back to life after cancer.
Dr. Jonathan A. Cosin is chief of gynecologic oncology at The Hospital of Central Connecticut. Maureen Bracco is a nurse practitioner with the Hartford HealthCare Medical Group. For more information on the Hartford HealthCare Gynecologic Oncology Program, click here.