At the time you were told you have myeloma, you may not have known anyone else who had been given the same diagnosis. You may have felt terribly alone, engaged in the fight of your life.
The truth is, you are not alone. Far from it! You've got an entire team of dedicated professionals in your corner, ready and willing to help in any way they can.
In this section, we'll introduce you to the professionals who may part of your healthcare team, the roles each of them plays, and how you can best communicate with them, so you can be a more informed and active participant in your own care.
First things first: Basic tips
- Got questions? Experiencing side effects or symptoms? Write them down and bring them with you to your appointment. Give a copy of your list to your doctor at the beginning of your consultation. Don't wait until the end, when your doctor is out of time.
- Take notes of what your doctor says during your consultation. Better yet, take someone with you and ask them to take notes for you. You might even consider recording your conversation with the doctor, so you can easily refer back to what was discussed.
- Ask your doctor if he or she has an assistant or nurse that you can talk to whenever you have questions.
- Find out if there are brochures or other educational material you can take home with you.
- Keep your own record of your medical history and treatment. You might find it helpful to keep a binder in which you can write down details about all your appointments and treatments, including information about who treated you, what medication you received, and your test results. Documenting your medical history will not only give you a better understanding of your condition, it may also be helpful if/when you have to deal with healthcare professionals who are not familiar with your case.
- Canadian law gives you the right to access to your medical information if your request it. That said, you may be charged a reasonable fee to cover copying costs.
Your family doctor was probably the first person you saw when you became ill. He or she is the person who helped narrow down the possibilities of what may be going on with you, and referred you to specialists. Most family physicians see only a few (if any) myeloma patients in their practices.
A medical oncologist is a physician who specializes in the diagnosis and treatment of cancer. As such, this doctor may be the key member of your healthcare team. He or she will determine your exact diagnosis and. in consultation with other specialists, design your treatment plan.
Because myeloma is a cancer of the blood, you may be referred to a hematologist – i.e., a specialist who studies, diagnoses and treats diseases and disorders of the blood. Some specialists specialize in blood cancers, while others may specialize in other blood problems, such as clotting disorders. Your hematologist may be the key member of your healthcare team.
If you require radiation therapy, you'll be referred to a radiation oncologist. As the name implies, a radiation oncologist is a physician who specializes in treating cancer with radiation therapy.
Questions to ask your oncologist, hematologist and/or radiation oncologist
- Who should I contact if I have problems, especially after hours or on weekends? Be sure to ask for names and telephone numbers.
- What are the results of my tests? What do those results mean?
- What are my treatment options? Which ones do you recommend? Why do you feel this is the best approach?
- Are there any clinical trials, available either at this centre or other centres, that I might consider?
- What should I expect when undergoing treatment?
- How will we know if the treatment is working?
- Are there any warnings or side effects I should watch out for? If they occur, to whom should I report them? Which ones do I need to report immediately?
- Are there foods, vitamins, supplements or herbal therapies that I should avoid?
- How often will I require testing and/or follow-up care?
A surgical oncologist is a surgeon who specializes in cancer operations – for example, if you need to have a tumour removed, you may be referred to a surgical oncologist.
If you require surgery on your bones, muscles or joints, you may be referred to an orthopedic surgeon.
Questions to ask your surgical oncologist or orthopedic surgeon
- Can you explain my surgical procedure in detail?
- What should I expect before, during and after surgery? What will my recovery be like?
- When do I need to come back for a follow-up visit?
Nurse, nurse practitioner or educator
There are several roles nurses may play in your healthcare team.
- An oncology nurse is a specially-trained nurse who works closely with your medical oncologist, hematologist or radiation oncologist to coordinate your care, oversee your therapy and keep your physician informed of any problems you may encounter.
- Other nurses may specialize as cancer educators.
- Nurse practitioners are nurses who have completed additional training in the diagnosis and treatment of medical conditions.
Questions to ask your cancer nurse or educator
- What is your role in my cancer care? Are you the person I should contact if I have a problem or question?
- Can you help me find reliable and accurate information on myeloma?
- What advice san you give me at this stage of my cancer treatment?
- What sort of activities can you suggest so I can stay as active as possible? Which activities should I avoid?
Your treatment for myeloma may involve many medications. Some may be oral, while others may need to be delivered intravenously. Pharmacists, whether they work in the hospital or in the community, are an invaluable source of information for you and your caregivers. They can help you understand the medications you've been prescribed, how they work, how to take them, what you can expect while taking them, and what to do if side effects occur.
Questions to ask your pharmacist
- Why was this medication prescribed? What is its purpose? What side effects are likely to occur, and which ones should I report immediately if they do occur?
- Are there vitamins, supplements and/or herbal remedies that I should avoid while taking this drug?
- Can you help me set up a system, such as daily pill boxes or blister packs, to make sure I take all my medications as prescribed?
Your dentist is an important but often overlooked member of your healthcare team. Good oral health is more important than ever when you're being treated for myeloma. Infections in your teeth drain into the lymph glands in your neck. If your teeth and gums are not kept clean, large numbers of bacteria can multiply and colonize your gums. These types of infections are an important cause of problems that can be prevented.
The best time to identify and treat dental problems is before you start chemotherapy, undergo a stem cell transplant, or start taking bisphosphonates. You may have to take antibiotics as a precaution before undergoing dental treatment, especially if you have a central line or catheter in place.
Dentists who work in cancer centres are familiar with the special requirements of myeloma patients, but dentists who work in the community may not be. Make sure your dentist is aware of the drugs you're taking (including intravenous therapies), of where you are in your therapy, and of any future plans you know of. It is also a good idea to encourage your dentist to talk to your cancer specialist.
Questions to ask your dentist
- Are there any infections or dental problems that should be taken care of before I begin my myeloma treatment?
- Are you familiar with the requirements for treating someone with myeloma and/or with a central line in place?
- What can I do to reduce the likelihood of extractions or other traumatic dental work while I'm undergoing treatment?
Registered dietician or nutritionist
Cancer and their treatment can make eating difficult. Eating enough – or eating the right kinds of food – to keep up your strength can be a challenge. Or you may experience the opposite and find it hard to avoid overeating because of medications that actually increase your appetite. Your dietician can help you maintain the healthiest possible diet as you go through the different stages of your treatment. If you are experiencing nausea, vomiting, loss of appetite, or a dry or sore mouth, your dietician can suggest foods or drinks that may help.
Questions to ask your dietician or nutritionist
- I'm finding it difficult to eat. Is there anything you can recommend to help me?
- I'm about to start a new therapy. What is known about this treatment's effect on appetite, digestion, etc.? Is there anything you can recommend to reduce its effects?
- My appetite has increased since I've started taking steroids, and I'm finding it hard to control my eating. What should I do?
Social worker or counselor
Like a psychologist, a social worker or counselor can help you deal with the many emotional changes that can results from being diagnosed and living with myeloma. A social worker may also be able to help you deal with some of the practical issues that can arise, such as finding out more about your healthcare coverage.
Questions to ask your social worker or counselor
- Can you help me and my family learn ways of coping with the changes brought on by myeloma?
- Can you help me figure out the healthcare or other benefits (for example, short or long-term disability leaves) for which I may be eligible?
Psychiatrist or psychologist
A psychiatrist is a medical doctor who is specialized in the diagnosis and management of mental illness. A psychologist is a professional who has undergone advanced training in counseling and human psychology, but is not a physician.
Both psychiatrists and psychologists can be very helpful in dealing with the psychological, emotional and behavioural issues you may face. In addition to "talk therapy," psychiatrists are licensed to prescribe medication, if required.
Clergy member or spiritual advisor
Some people find it helpful and comforting to talk with a member of the clergy or spiritual advisor.
Questions to ask your psychiatrist, psychologist, clergy member or spiritual advisor
- Can you help me better deal with the emotional effects of my diagnosis?
- My family members and loved ones are very upset about my illness. How can I help them?