I am lucky to have been treated a major cancer center — the Dana-Farber Cancer Institute in Boston, Mass. — where clinicians take a holistic approach to fighting disease, providing referrals for help with emotional issues and to foster general well-being. The Institute’s survivorship center, The Lance Armstrong Adult Survivorship Clinic, offers massage, acupuncture, and nutritional consultation.
But even there, I’ve had trouble connecting with my social worker, who followed me closely when my need was extreme, but now seems have to have drifted away — even though I still have things I would like to discuss.
Though I have the most incredibly supportive nurse practitioner, who says that I can call any time, sometimes I feel hesitant because I know that she is dealing with patients who have more immediate concerns than mine.
Other survivors whose blogs I read complain about feeling as though they are lost in the system, frustrated by being told that they need to accept the limitations of their “new normal” rather than trying to address feelings head-on.
The good news is that with some 12 million cancer survivors living in the United States today — compared to just 3 million in 1971 — increasing attention is being paid to the needs of long-term survivors.
To provide a better quality of life for them, in recent years several organizations have put together guidelines for their care.
For example, the Institute of Medicine (IOM) has researched the state of care for cancer survivors, and found that little guidance is available for them and their healthcare providers regarding the medical and psychosocial problems that may arise after treatment.
The IOM suggests that once a person has completed cancer therapy, he or she should be provided with a summary of the treatments received along with a follow up "care plan." This care plan should summarize the potential physical and psychosocial effects, their symptoms and treatment, recommendations for cancer screening, financial issues, recommendations for a healthy lifestyle, genetic counseling, and effective prevention options.
Livestrong, a nonprofit organization that provides support for people with cancer (formerly known as the Lance Armstrong Foundation), provides a guide for creating a long-term care plan in connection with your oncologist http://www.livestrongcareplan.org
For people like me who are past that stage, the best option is probably to write down all the things that are going on outside the sphere of your cancer center, and then to pick one person you can communicate with.
I go every two months — more frequently than if I did not have a lot of things going on. And when I go, I take my list.
Of course, if I am feeling really worried about something, I either call to discuss it on the phone or make an appointment to be seen earlier.
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