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 2.8 million breast cancer survivors in the United States, and that number is expected to increase substantially.
Still, results from national surveys of patients, oncologists, and primary care doctors suggest that there are gaps in long-term care after primary treatment for cancer is completed. This long-term care is called survivorship care.
Because of treatments they’ve received, many breast cancer survivors have side effects that may continue for years after primary treatment ends, including joint pain, fatigue, problems sleeping, and hot flashes.
A study suggests that when these long-term side effects go untreated, they can lead to anxiety and depression among breast cancer survivors.
The research, "Symptom burden, unmet need for assistance, and psychosocial adaption among longer term breast cancer survivors," was presented on Dec. 9, 2016 at the 2016 San Antonio Breast Cancer Symposium.
"There's almost an unwritten 'don't ask, don't tell' mentality about residual and persistent side effects of breast cancer treatment," said lead author Steven Palmer, Ph.D., a research scientist at the University of Pennsylvania Abramson Cancer Center. "Clinicians seeing patients for routine follow-up care may be focusing on recurrence prevention and detection to the exclusion of long-term symptoms and whether survivors need help managing them. This lack of attention to potential symptoms can lead to increased levels of anxiety and depression for these cancer survivors."
In the study, 103 women who had been treated for breast cancer and considered disease-free for at least 3 years completed a survey on whether they had any of 19 side effects and how severe they were. The researchers also assessed the women for anxiety and depression.
About 70% of the women were white. Half were older than 63 years and half were younger. About 78% of the women had been diagnosed with stage I or stage II breast cancer.
The researchers found that nearly all of the women -- 92% -- reported at least three long-term side effects. The women had an average of 9.2 side effects; the most common were:
- fatigue (67%)
- joint pain (66%)
- weight gain (60%)
- loss of libido (55%)
- problems sleeping (52%)
About two-thirds of the women -- 65% -- said they had an unmet need for help with a side effect. The women had an average of three unmet needs for help; the most common side effects the women wanted help with but hadn’t received it were:
- joint pain (29%)
- fatigue (25%)
- weight gain (23%)
- memory problems (21%)
The researchers found that women who had long-term side effects and women who felt they weren’t getting help for long-term side effects were more likely to feel anxious or depressed.
The researchers suggested that if the results of the study were applied to the larger breast cancer survivor population, more than 1.3 million survivors could be experiencing at least three long-term side effects for which they need help.
"Survivorship care is about more than screenings and disease prevention. It's about the whole person," said senior author Linda A. Jacobs, Ph.D., C.R.N.P., director of cancer survivorship programs at the Abramson Cancer Center. "Our results point to a need for a more holistic view of breast cancer care where providers are thinking about what happens next for these patients and guiding them to services that can help improve their quality of life on multiple levels."
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. It’s also a good idea to bring up any long-term side effects you’re having and discuss how they can be treated. 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.
- If I’m having long-term side effects, such as joint pain, fatigue, loss of libido, or problems sleeping, where do I go to get help easing those problems? Are there medicines I can take? Are there complementary or holistic therapies that can help?
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.