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 Surviving Cancer: One Size Does Not Fit All
 

1.  Who is a cancer survivor?

2.  What are some of the aftereffects of cancer treatment?

3.  What types of aftereffects are there?

4.  What are some of the most concerning late effects?

5.  Why is Winship starting a survivorship program now?

6.  What can I expect from a survivorship clinic visit and how is it different from regular follow-up with my oncologists or surgeons?

 

1.  Who is a cancer survivor?

The National Coalition for Cancer Survivorship (NCCS) pioneered the definition of survivor as from the time of diagnosis and for the balance of life, a person diagnosed with cancer is a survivor. NCCS later expanded the definition of survivor even further to include family, friends and voluntary caregivers who are affected by the diagnosis in any way.

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2.  What are some of the aftereffects of cancer treatment?

  1. Aftereffects can be described as long-term or late effects of cancer and treatment. Aftereffects can range from very mild to serious. They may vary from one survivor to the next.
  2. Long-term effects develop during treatment and are lingering or chronic(do not go away). They continue after treatments are over. Many long-term effects improve or resolve with time such as anemia, fatigue or anxiety (feeling worried). Some survivors may experience long-term effects that are permanent such as limb loss, weakness or nerve damage.
  3. Late effects are delayed and can surface months to years after treatment ends. Generally, the earlier these problems are identified, the easier they are to treat. Some late effects are long-lasting or permanent such as certain types of heart disease or lung disease, lymphedema (swelling in a limb due to blockage of the lymph system), osteoporosis, depression and second cancers.

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3.  What types of aftereffects are there?

  1. Physical aftereffects such as early menopause, infertility, chronic pain, chronic infections, physical loss of a limb and/or function, lymphedema, impotence, gastrointestinal disturbance, fatigue, peripheral neuropathies, cardiac problems.
  2. Psychosocial aftereffects such as body image changes, sexuality changes, insomnia, depression, chronic fatigue, anger, anxiety, fear.
  3. Practical aftereffects such as difficulty working due to physical and/or emotional aftereffects, changes in relationships with loved ones, friends or co-workers, problems getting or retaining health or life insurance coverage, challenges communicating with healthcare team members, financial stressors, employment discrimination.

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4.  What are some of the most concerning late effects?

Some late effects of treatment do not occur until 5-10 years  (or even 20 years) after treatment stops. Survivorship research is looking at the best way to screen for late effects in order to develop early interventions and treatments for late effects.

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5.  Why is Winship starting a survivorship program now?

There are an estimated 14 million cancer survivors in the United States. This figure is predicted to increase in the coming years due to improved early detection and treatment of many cancers. Many cancers considered to be incurable in past are now curable. Those patients with the most common cancers now become survivors and even patients requiring episodic or long term treatment are considered to have survived their cancer and treatment. Cancer survivors often experience a higher burden of illness and self-reported health outcomes than matched controls who have never been diagnosed with cancer.

The IOM (Institute of Medicine) issued a report in 2005, “Lost in Transition” which outlined survivorship care and the Commission on Cancer (CoC) has proposed that at least basic survivorship care be implemented at any of the institutions accredited through the American College of Surgeons by 2015. We want everything in place and functioning long before it is required. It’s the “right thing to do” for patients and families. It fits in perfectly with our mission and vision as an NCI-designated Cancer Institute.

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6.  What can I expect from a survivorship clinic visit and how is it different from regular follow-up with my oncologists or surgeons?

  1. Patients will be scheduled to begin survivorship care at several different points on the cancer treatment timeline. Some will be seen soon after diagnosis, and others will be seen soon after transitioning off active treatment.
  2. At the first survivorship visit you can expect to meet with the survivorship nurse practitioner or physician assistant on your care team who will be familiar with your treatment.
  3. You will complete a brief symptom assessment form and meet with the social worker
  4. You will receive a written treatment plan (or summary) as well as a long term follow-up plan for assessing you for recurrence, secondary cancers and aftereffects of treatment. We will also send a copy of this to your referring physician so that they will have this information in their medical files.
  5. You will receive referrals for any other specialists you might need to see and will be scheduled for any necessary follow-up appointments.

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