There is no reason to unnecessarily suffer from the effects of treatment or from the disease itself. There have been many advances in the management of nausea, pain, fatigue, weight loss and depression. Many side effects are not visible and, unless voiced by you, will remain untreated. Doctors often say that these problems are not reported to them and are therefore untreated or ignored.
It is important that you now monitor your body, your psyche and its changes during and after your treatment for cancer. Keep a record or journal of your treatments and your physical, emotional and mental state – using a measurable scale. This can be as simple as measuring the intensity of a symptom on a scale from 1 to 5. Ask if your doctor or hospital has already developed such a system for patients. A written record provides a basis of comparison or can indicate a pattern. You can then take corrective action. For example, you may feel well and energetic in the morning, but end up getting your treatment in the late afternoon when you feel weakest. Just by changing the time of your treatment, you may see an immediate difference in your reaction and rate of recovery.
Survivors and their supporters report that you can improve your ability to cope and your quality of life if you:
Strongly insist on having a nurse and/or case manager assigned to you and available after hours.
Select one family member or friend as your representative if you are unable to speak for yourself. Be sure to inform your health care team in advance.
Articulate your symptoms to your doctor. Don’t wait to be asked! If necessary, use your journal as documentation.
Avail yourself of professional and/or peer support and self-help groups.
After Treatment and for the Balance of Life
Now, and for the rest of your life, you must be self-aware, as others cannot, about subtle and not so subtle changes in symptoms such as pain, weakness, fatigue, or loss of appetite.
Take advantage of cancer support services such as pain management clinics; insurance and financial aid assistance, psychological counseling and therapy. If such services are unavailable, then advocate for support and referrals in order to receive these services.
Stay informed about new research and developments in the treatment or late effects of your type of cancer.
Attend community cancer programs or participate in teleconferences and webcasts that provide credible and current information.
Ask your doctor(s) for a written summary of the treatment(s) received; drugs, dosage, amount of radiation, etc. Maintain this record with your health documents and present it to any new treating physician(s).
Be vigilant about monitoring your own health. Have regular check-ups and talk with your doctor about secondary prevention and monitoring for late effects of treatment.
The Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care is a unique opportunity for patients and survivors to recognize pioneers who are transforming the cancer care system.
The NCCS Cancer Policy & Advocacy Team (CPAT) is a program for survivors and caregivers to learn about pressing policy issues that affect quality cancer care in order to be engaged as advocates in public policy around the needs of cancer survivors.
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NCCS represents the millions of Americans who share a common experience – the survivorship experience – living with, through and beyond a cancer diagnosis.
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