About 4 years after being diagnosed with cancer, 14% of disease-free survivors were dissatisfied with the care they received for ongoing, long-term side effects of cancer treatment, according to results from the FiX study.
The research was presented on Sept. 21, 2021, at the European Society for Medical Oncology (ESMO) Congress 2021. Read the abstract of “Late effects, long-term problems, and unmet needs of cancer survivors.”
“More money is being spent on research looking at new cancer treatments,” explained Dr. Martina Schmidt, of the German Cancer Research Center in Heidelberg, who presented the research. “Great efforts are being made and there have been impressive improvements in survival. But what about quality of life? Less attention and less research funding are focused on that area.”
About the study
The FiX (Fatigue in Germany — Examination of prevalence, severity, and state of screening and treatment) study surveyed 2,507 people who had been diagnosed with 16 types of cancer.
Besides asking specific questions about when the people were diagnosed and with what type of cancer, the survey also asked about:
- how satisfied the people were with the cancer care they received
- the side effects the people experienced
- the severity of the side effects
- how satisfied the people were with the care and support they received for the side effects
This analysis included survey answers from 1,348 people; 163 of those people were diagnosed with breast cancer. It had been about 4.4 years since the people had been diagnosed with cancer when they answered the survey.
The most frequently reported side effects that caused extreme, significant, or moderate burden were:
- loss of physical function, reported by 40.7%
- fatigue, reported by 38.5%
- sleep problems, reported by 36.6%
- sexual problems, reported by 35.4%
- joint pain, reported by 33.4%
- anxiety, reported by 33.2%
- neuropathy, reported by 28.9%
In addition, 14.7% of the people reported extreme, significant, or moderate body image problems. This was the most common long-term side effect reported by people diagnosed with breast cancer.
Overall, the people rated the care and support they received for most of these side effects as bad or modest. The percentage of people who said the care and support they received was bad by specific side effect was:
- 53.2% for body image problems
- 50.4% for sexual problems
- 50.3% for weight gain
- 45.2% for problems concentrating
- 45.1% for fatigue
- 44.5% for neuropathy
- 41.0% for memory problems
The people reported good care and support for pain, skin problems, lymphedema, and osteoporosis.
“A limitation of this study was that we had no control group of the general population, so we can’t say for certain that these side effects were caused by cancer,” Dr. Schmidt said. “But the aim of this study was to draw attention to the specific burdens that cancer survivors have after a couple of years and where more research might be needed, and where potential improvements in supportive care might be needed, especially for issues that might be considered clinically less relevant or where we don’t have known medical treatments.”
What this means for you
If you’ve been treated for breast cancer and are experiencing ongoing, long-term side effects, it’s very important to tell a member of your care team. Keep talking to different people on your team until you feel someone has addressed your concerns.
If no one on your cancer care team can help you, talk to your primary care doctor. Ask for a referral to someone who specializes in the issues you’re experiencing. It’s also a good idea to ask about medicines and complementary and alternative therapies that may be able to help.
There is only one of you and you deserve the best care possible, both during and after cancer treatment. In many cases, you may have to be your own best advocate to make sure you get the best care possible.
Listen to an episode of the Breastcancer.org Podcast with Kimberly Irvine about becoming your own advocate.
Written by: Jamie DePolo, senior editor
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