Who do you turn to when you’re losing too much weight, have lost all your strength and can’t sleep at night?
People with mesothelioma experience a variety of health changes that aren’t addressed in conversations with their oncologist.
It takes a team of health professionals to care for someone with mesothelioma. One doctor alone cannot provide the full range of care needed by someone with cancer.
This is where ancillary care comes in.
Ancillary care is the medical industry term for supportive health care services.
When you can’t seem to get your strength back after cancer treatment, your doctor may prescribe physical therapy, a therapeutic type of ancillary care.
If you can’t seem to speak the same after a recent intubation, your oncologist may refer you to a speech therapist.
Other examples of ancillary care include lab tests ordered by your doctor, mental health therapy or at-home nursing.
These services work together to treat the whole person, not just the cancer. Ancillary health care is essential for people with cancer to maintain health and improve quality of life.
Be an Advocate for Your Health
While oncologists are experts in cancer care, they are not experts in nutrition for patients, rehabilitation or mental health.
Oncologists do their best to control your cancer, and they care about your quality of life. However, this does not make them mind readers or experts on how to live a healthy life.
You and your loved ones will have to speak up and advocate for comprehensive health care. People with mesothelioma might request the following types of ancillary care:
- If you’re having trouble breathing, ask for a referral to a respiratory therapist, who can help improve lung function with breathing exercises and techniques.
- If you’re experiencing shoulder and back pain after surgery, ask for a physical therapy prescription because insurance might cover some of the cost.
- If your doctor simply tells you to eat more after you express concern about losing weight, ask for a referral to a dietitian.
- If you’re feeling stressed out, ask if your cancer center offers mental health counseling, a support group or appointments with oncology social workers, who can connect you with helpful resources and support.
In a perfect world, your oncologist would be able to predict all your needs and preemptively refer you to all the ancillary care you could ever want. Because each person with mesothelioma has different medical needs, this kind of foresight simply isn’t possible.
Don’t be afraid to advocate for your own supportive care. It is one of the best steps you can take to boost your quality of life and overall health.
Questions and Answers from the March 2016 Online Support Group
Patients and caregivers asked a number of questions during the recent online support group. Here we include answers to some of them.
Q: Is it normal to feel fatigued one year after a pleurectomy/decortication (P/D)?
A: No, experiencing fatigue one year after a pleurectomy/decortication is not normal. Most people recover within six months of the surgery. Certain symptoms, such as pain near the surgery site, may linger longer than six months. Because it is abnormal for fatigue to last a year after surgery, you should bring this to the attention of your oncologist and your surgeon.
Q: Is it OK to eat fatty foods when you have cancer?
A: Yes, certain fatty foods are a good source of calories and nutrition for people with cancer. Opt for healthy fats, especially anti-inflammatory omega-3 fatty acids, which are found in cold water fish, flaxseeds and nuts. Other sources of healthy fats include avocados, eggs, coconut oil and full-fat dairy.
Consider skipping on fried foods at restaurants because the oils used are generally packed with omega-6 fatty acids, which promote inflammation. Instead, make fried foods at home using coconut oil.
Consider the following tips to add healthy fats to your diet:
- Cook with coconut oil or grass-fed butter to add vitamins and nutrients to meals.
- Snack on guacamole or eat avocados as a side dish.
- Add cheese to omelets, sandwiches and soups.
- Eat bacon or sausage with eggs for breakfast.
- Make smoothies with yogurt, milk or ice cream.