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Follow-Up Care of Cancer Survivors Needs Improvement According to National Survey

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Because of better diagnostic tests and advances in cancer treatments, more people are living longer than ever after being diagnosed. This is true for all types of cancer, including breast cancer. Experts estimate that there are about 14 million cancer survivors in the United States and the number is expected to increase substantially.

Still, results from a national survey of oncologists and primary care doctors suggest that most cancer survivors are on their own when it comes to survivorship care.

The study was published online on April 21, 2014 in the Journal of Clinical Oncology. Read the abstract of “Provision and Discussion of Survivorship Care Plans Among Cancer Survivors: Results of a Nationally Representative Survey of Oncologists and Primary Care Physicians."

Because of treatments they’ve received, many breast cancer survivors have a higher risk of developing other diseases as they age, including high blood pressure, heart disease, and osteoporosis. To make sure breast cancer survivors are regularly screened for these and other diseases that they may be at higher risk for, experts have developed the idea of survivorship care planning.

The Institute of Medicine, an arm of the National Academy of Sciences, published a report in 2006 recommending that all cancer survivors receive a survivorship care plan after they were done with treatment. The survivorship care plan should include a written treatment summary and a personalized follow-up plan developed by the patient’s oncologist. The Institute of Medicine report also recommends that survivorship care planning include discussions about which doctors (oncologist, primary care doctor, other specialists) should be seen for specific follow-up care.

To see how many oncologists and primary care doctors were providing survivorship care plans to their patients and making recommendations about which doctors to see, the researchers analyzed results from the Survey of Physicians’ Attitudes Regarding the Care of Cancer Survivors. This survey was done in 2009 and given to a nationally representative sample of 1,130 oncologists and 1,020 primary care doctors.

The oncologists’ survey results:

  • 64% said they always or almost always discussed survivorship care with their patients after primary cancer treatment was done
  • 50% said they usually discussed which doctor would provide follow-up for most of the patient’s cancer care
  • 42% said they discussed which doctors would take care of other medical issues
  • 31.7% said they regularly discussed recommendations for survivorship care with survivors and made recommendations about which doctor to see for specific follow-up medical care including cancer
  • fewer than 10% said they routinely gave patients a written survivorship care plan
  • fewer than 5% said they usually gave patients a written survivorship care plan and also discussed survivorship care recommendations and made provider recommendations
The primary care doctors’ results:
  • 21% said they routinely discussed recommendations for survivorship care with patients
  • 34% said they always or almost always discussed which doctor would provide follow-up care for cancer
  • 33% said they regularly discussed which doctor would provide other, non-cancer care
  • 12% said they regularly discussed all three of these topics with patients

The study also found that primary care doctors who got written survivorship care plans from oncologists were nine times more likely to have survivorship discussions with patients.

This study suggests that many cancer survivors aren’t getting written survivorship plans and also aren’t getting recommendations about which doctors to see for cancer-related and non-cancer-related follow-up care.

After your main breast cancer treatment is done, it’s important to focus on what’s now most important: your good health. You have to make sure you get the best ongoing care and live your best life. If you’ve finished breast cancer treatment and your oncologist hasn’t talked to you about a survivorship care plan, it’s a good idea to bring it up at your next appointment. Here are some questions you may want to ask your oncologist:

  • Can I get a survivorship care plan in writing that explains all the medical issues I need to consider and tells me which screening tests I need and when I should have them?
  • Which doctor should I see for each medical issue?
  • If your oncologist recommends that you see a specialist -- a cardiologist for example -- and you’ve never seen one before, you may want to ask for a referral to a specific doctor.
  • If there is anything in your survivorship care plan that you don’t understand, ask your doctor or nurse to explain it.

It’s also a good idea to talk to your primary care doctor about your survivorship care plan and ask which parts of it she or he will be responsible for.

There’s only one of you and you deserve the best care possible, both during and after cancer treatment. Because the idea of survivorship care plans is relatively new, you may have to advocate for yourself to make sure you that get a written plan.

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