What can I do BEFORE my first appointment with the oncologist?
When you first hear the word cancer, you may feel a sense of panic, helplessness, or a loss of control. Then you realize that it may be several days or weeks before you can meet with a specialist to find out more about your diagnosis. This time can be filled with anxiety and fear - this article was created to help you manage your concerns during that time.
It’s an emergency!
The word cancer gets your (and your family’s) adrenaline rushing - let’s get this taken care of NOW! While it feels like an emergency, in most cases (aside from acute leukemia or cancers that are causing severe symptoms), it is not. You can safely take a few weeks to gather information, educate yourself about your options, and make a treatment decision that you feel comfortable with.
You can start by finding a specialist. This may be someone recommended by the provider who first discovered the cancer or someone a friend or family member has seen, or you can call a local cancer center and ask for help in finding an oncologist. It is important to remember that cancer is not one disease, there are many, many different types of cancer and one doctor may not be right for every cancer. For example, your neighbor had breast cancer and she had Dr. X do her surgery. You have prostate cancer - you need a surgeon that treats prostate cancer - no offense to your neighbor, but Dr. X is not your gal/guy. Learn more about finding an oncology specialist on OncoLink.
The days are gone of the provider telling you exactly what has to be done; in many cases, you will be given treatment options and have to choose what is best for you with guidance from your oncology team. You will be better suited to make these decisions if you know a little bit about your cancer. Visit a reliable cancer information website like OncoLink, the American Cancer Society or the National Cancer Institute. Read about your cancer and possible treatment options. Make a list of questions. Come to your appointment with this knowledge and you will be able to better understand what you are told and get more out of the visit.
What does the oncologist need?
When you go for an initial consultation with an oncologist (surgical, medical, or radiation), they will want to review your medical history, any records related to the diagnosis, radiology scans, and pathology slides and reports. Many centers like to have this information before you arrive - ask about this when you make the appointment. You will likely need to sign forms to have your information released. You may be able to have the records sent directly to the oncologist or you may need to pick things up and deliver them. This is a great way to utilize those friends and family who want to help - have them pick up or deliver records. The doctor’s office that discovered the cancer can help you get things rolling. Remember to get all necessary referrals if your insurance requires them to avoid having your appointment canceled. You may also want to check that the oncologist is in-network with your insurance to avoid surprise out-of-network bills.
Who should I tell?
It is a very good idea to bring a trusted friend or family member to your appointment - someone who can be unbiased and help you make decisions with their heads instead of their hearts. They can take notes, ask questions, and help you remember what was said once you are home. It is a good idea no to tell too many people about the diagnosis before you have more information. People mean well, but they will tell you stories about friends and family who had cancer, no matter what type of cancer or how bad the outcome for those people. Remember that every cancer is different and every case is different. Hearing a story about so-and-so who also had cancer isn’t going to help you at this point and may add to your anxiety.
A second opinion can present different treatment options that were not known about or offered by the first provider or it can act as a quality check to confirm the first suggested treatment. Second opinions are also a way to educate yourself about the options. If one providerr says treatment A is the best, but provider number 2 does not agree, ask them to explain why. Many patients fear offending their providers by getting a second opinion. A good provider understands the need to research all of your options, particularly when dealing with something as scary as cancer. If your provider discourages a second opinion or infers that you can't get better care somewhere else, all the more reason to get another opinion. You do not need the permission of your provider to get a second opinion, except in the case of needing a referral from your primary doctor for an HMO insurance carrier.
When seeking a second opinion, consider finding an NCI designated cancer center, even if this means going outside your local area. These centers have doctors that specialize in specific types of cancer, offer the latest treatments and clinical trials. Getting a second opinion at a major medical center does not necessarily mean you have to get your treatment there. In many cases, they can provide recommendations for treatment that can be taken to your local doctor. It can be well worth a long drive or overnight visit to get a second opinion on your options. Learn more about second opinions on OncoLink.
Coping With Anxiety
It is normal (if not expected!) to have feelings of anxiety, worry, and nervousness while waiting for your specialist visit. For many, learning more about what they are dealing with can help alleviate some anxiety. Find ways to manage your anxiety - meditation, exercise, go on a scenic walk, hobbies. Re-direct your thoughts by reading a good book, watching a movie, spending time with family and friends, going to a ball game. Just because you have cancer doesn’t mean your life as you knew it is over. It is important to try to maintain and continue to embrace some normalcy-this can help you manage your pre-appointment anxiety. Also, don’t forget to enlist your support system to help you cope with your pre-appointment jitters. A trusted ear, a hand to hold, a person to laugh with, can make ALL the difference in helping get through some of our most challenging moments.
A word of caution - research the basics of your diagnosis on trusted websites, but do not spend too much time reading about your diagnosis, treatment, prognosis, and side effects of treatment on the internet. Every case is different and without medical guidance about the information you have obtained, you subject yourself to worrying about many things that may NEVER happen to you. Why open that can of worms? Be empowered through your information gathering, but don’t let it run your life and your thoughts while waiting for your appointment with the specialist.