Throughout the course of your illness, keep track of all questions that come to mind. Write them down because eventually you, your family and friends are going to want answers. Put the two or three most important questions at the top of your list, since time with your doctors or nurses may be limited. Also list anything that occurs to you, including symptoms, odd feelings or anything you find out of the ordinary. Make sure a member of your medical team reads all of your questions and concerns, because he or she may notice something that is important than you have overlooked.
It is helpful to have a member of your family or a close friend accompany you to the clinic to help you ask questions and understand and remember answers. It can also be helpful to write down the answers to your questions.
Participation in Your Care
Never underestimate the importance of attitude. You are a partner in your treatment so speak up! Work closely with your doctor, ask questions and explore all of your options. If you have concerns about your physician, discuss them. If these concerns cannot be resolved, ask for a referral to another doctor. Many people also find it helpful to ask their doctor if they can speak with other patients that the doctor has treated, to know how that person felt, and find out what that person may have done to help them get through treatments and dealing with the illness.
Choosing a Doctor
Your family doctor will refer you to a specialist who is likely a medical oncologist, hematologist or hematologic oncologist. Before agreeing to treatment by a doctor or at a clinic, be certain that your medical and personal needs will be met. Before you start therapy, you may want a second opinion about the diagnosis and treatment plan. If you opt for a second opinion, remember that you should have a complete copy of your medical records (original x-rays, pathology, scans and reports) delivered to the consulting doctor, preferably before your appointment. It is generally best to get copies of all of these materials and deliver them yourself. A second opinion is not considered adequate unless the tumour sample is reviewed by another pathologist, an expert in lymphoma. Your doctor can often recommend an oncologist you can visit to get a second opinion.
What are my Rights as a Patient?
You have the right to get a second opinion (or more). And there are many good reasons why you should. Feeling comfortable with your healthcare team and peace of mind can be the most important reasons. Doctors interpret things differently and communicate them to their patients differently as well. Even if you are absolutely comfortable with your physician, it cannot hurt to gain additional reassurances that all of your options have been explored. Sometimes your initial diagnosis leaves little hope for recovery. In this case, another opinion cannot hurt and could perhaps change things for the better. Doctors specialize in different areas, but even if you are seeing a specialist for your cancer type, get another qualified opinion to confirm that the diagnosis is correct in all aspects. A tumour declared inoperable by one surgeon may be operable by another. Different doctors have had past successes with different treatments or combinations of treatments. Additional medical opinions may provide alternative treatment options. And with new treatments and clinical trials being constantly funded and approved, you may find the one doctor who can make a difference in your prognosis.
Click here for more information on clinical trials and other treatment options.
Click here to access the International Lymphoma Patient Charter developed by the Lymphoma Coalition.