What can I do BEFORE my first appointment with the oncologist?
The word cancer can make you feel a sense of panic, helplessness, or a loss of control. It may be days or weeks before meeting with a specialist to find out more about your diagnosis. This time can be filled with anxiety and fear - this article will help you manage your concerns during that time.
It’s probably not an emergency!
The word cancer can be scary. In most cases (aside from acute leukemia or cancers that are causing severe symptoms), it is not an emergency. You can safely take a few weeks to gather information, learn about your options, and make a treatment decision that you feel comfortable with.
Start by finding a specialist. You may need more than one cancer doctor.
- A surgical oncologist does surgery to treat cancer.
- A medical oncologist prescribes systemic treatments like chemotherapy and immunotherapy.
- A radiation oncologist manages radiation treatments.
The provider who diagnosed your cancer may recommend someone. You can also ask family members and friends who may have been treated for cancer. You can contact or research local cancer centers that can help identify a provider who treats your type of cancer. Remember cancer is not one disease. There are many types of cancer and many types of treatment. Learn more about finding an oncology specialist on OncoLink.
When you see your provider(s), they will talk to you about your diagnosis and treatment options. The choice of treatment is yours. Knowing about your cancer will help you make a decision.
Try to research just the basics of your diagnosis on trusted websites. Do not spend too much time reading about your diagnosis, treatment, prognosis, and side effects of treatment on the internet. Each case is different. Don’t let gathering information run your life and your thoughts while waiting for your appointment with the specialist. Some tips are:
- Use information from trusted cancer information websites like OncoLink, the American Cancer Society or the National Cancer Institute.
- Read the basics about your cancer and possible treatment options.
- Bring articles you have read to your appointment to ask your provider about options.
- Make a list of questions BEFORE your appointment.
What does the oncologist need?
When you go for your first appointment(s) with your specialist, they will want to have information about:
- Your medical history.
- Records about your cancer diagnosis including lab work, and biopsies.
- Radiology scans you have already had done (X-rays, CT, MRI, Pet Scans). If these are done at other centers, ask for a digital copy of your scans to bring to your appointment with you.
- Check to see if you need referrals from your primary care provider to see a specialist. Now is the time to get them. A specialist can refuse to see you without a referral, so make sure this paperwork in done early.
- It is also a good time to review your insurance coverage and make sure the providers you will be seeing are in your insurance network. If they are out out-of-network, you could be responsible for much higher costs related to your care.
Should I tell anyone?
This is not an easy question with a right answer for everyone. When you decide to tell people in your life about your cancer is up to you. They may have a lot of questions, offer advice, or share their own experiences with cancer. You may want to wait to tell more people until you are comfortable with what is happening, understand your treatment options and plan, and can share information with folks.
It is a great idea to bring a trusted friend or family member to your specialist appointments with you. They can take notes, ask questions and be a support to you as you are hearing about your options.
You may also want to wait before telling your job since your treatment plan may impact your ability to work your normal schedule.
This is also a good time to think about your use of social media for sharing your medical information. Remember that it is easy to put things up on to Facebook or Instagram, but it can be hard to take them down permanently. Think about how your posts may impact family, friends, coworkers, your boss, and your future. Websites like Caring Bridge allow you to write about your cancer experience while keeping it more private amongst individuals you ask to be part of your online community.
You may want to hear about your treatment options from more than one specialist. This is called a second opinion. Another provider may recommend different treatment options or confirm the treatment recommendations from your first provider. It is a great way to learn about all that is available to you. Don’t be afraid to get a second opinion. Your providers should not be insulted or bothered by this. You do not need their permission to get another opinion. However, if you do need referrals for your insurance, you will still need to get this from your PCP.
You may want to go to an NCI-designated cancer center for your second opinion. These centers have providers that specialize in specific types of cancer and offer the latest treatment in clinical trials. This may mean traveling outside of your local area. Just because your get an opinion at a major center doesn’t mean you have to get your treatment there. Your specialists can coordinate care and recommend treatments to your local doctor
Managing your Emotions and Feelings
It is normal (if not expected!) to have feelings of anxiety, worry, and nervousness while waiting for your specialist visit. During times of stress, worry, and uncertainty in your life before cancer, what has helped you to cope? Think of ways to calm your mind and distract yourself.
- Try meditation.
- Go for a walk.
- Have a hobby---get busy! If not, this can be a great time to learn something new!
- Spend time with family and friends.
- Go to a game, a concert, a play.
Just because you have cancer doesn’t mean your life is over. You can still enjoy things that make you happy and might even learn something new. Don’t forget to use your support system to help you cope with your pre-appointment jitters. A trusted ear, a hand to hold, and a person to laugh with, can make ALL the difference in helping us get through some of our most challenging moments.