Talking About Pancreatic Cancer With Your Healthcare Team
When going through treatment for cancer of the pancreas, your healthcare team is very important. Your healthcare team may include your oncologists, surgeon, nurse navigator, a dietitian, a social worker, or other medical professionals. Every member plays an important role. Use the tips below for talking with your healthcare team:
- Establish your main point of contact.
- Your main point of contact will probably be a nurse navigator, but it may be another member of your healthcare team. This will be the person you should contact first with questions.
- You need to always be open and honest with your healthcare team about your physical and emotional well-being.
- Do not be afraid to ask questions.
- Pancreatic cancer is usually not a medical emergency. There is time to ask your healthcare team any questions you may have, and to consider your treatment options.
- Write your questions down before your appointments. Take a pen and paper to write down the answers.
Choosing an Oncologist:
The first step on the pancreatic cancer treatment journey is to find an oncologist (medical or surgical) who inspires trust. You may want to discuss this with your nurse navigator. It may seem overwhelming to choose an oncologist. First, start with referrals from your primary care physician, specialist, or insurance carrier. Talk to family and friends who may have recommendations.
Here are some things to consider when choosing an oncologist:
- Is the oncologist board certified?
- How much experience does he or she have in treating pancreatic cancer?
- Do you feel comfortable talking with this doctor? Does he or she listen well?
- Is the staff compassionate? Is the environment a good one or do you feel rushed?
- What hospital(s) does this oncologist see patients in?
- What are the office hours?
- What if you have an emergency? Can you call?
- Can this doctor be contacted after hours?
You will be spending a lot of time with the oncologist and staff nurses and technicians, so it’s important to feel comfortable with them.
Specific Questions To Ask Your Doctor and Healthcare team
- Has my cancer spread beyond the pancreas?
- What is the stage of my pancreatic cancer?
- How is treatment likely to help in my case?
- What are all my treatment options?
- Which treatment do you recommend and why?
- What is the goal of the treatment you recommend?
- What are the long term and short term side effects of treatment, and how can I manage them?
- How would treatment affect my daily life?
- How much experience do you have with this type of treatment?
- How experienced is the hospital in treating people with this cancer?
- Should I be referred to a cancer center for treatment?
- Should I think about taking part in a clinical trial? Am I eligible for clinical trials?
- Based on what you've learned about my cancer, what is my prognosis?
- What should I do to be ready for treatment?
- Will my fertility or ability to have children be affected?
Here is an FAQ that can help you in your pancreatic cancer journey –
What is my diagnosis?
This question may seem like a no-brainer, but in the rush of appointments, you may not receive a clear answer. If you are unsure of your diagnosis, ask your oncologist. Sometimes more specific tests are needed to make an exact diagnosis.
What is my prognosis? What stage is my cancer?
Knowing your prognosis can help you better prepare for the future and select your best treatment plan. In order to know the stage of your cancer, your doctor will need to do tests. These may include scans, genetic testing, and/or a biopsy. The answer to these questions may be difficult to hear. You may consider having a family member or friend with you at this appointment.
What are my pancreatic cancer treatment options? What would you recommend?
Ask your oncologist to explain all your treatment options, including possible side effects and cost. Ask your oncologist which treatment he or she recommends. If you are unsatisfied with your options, do not be afraid to seek a second opinion.
Am I eligible for a clinical trial?
Clinical trials help improve the standard of care for all cancer patients. Based on your situation, a clinical trial may also be your best pancreatic cancer treatment option. Each trial has its own eligibility requirements.
What are the possible short-term and long-term side effects of treatment? How will these affect my normal activities?
Always ask about short-term and long-term side effects before beginning treatment so you are prepared. You should also consider short-term and long-term side effects when deciding which treatment plan is best for you.
How can I manage these side effects?
Some side effects can be easily managed through diet, exercise, or over-the-counter medication. Other side effects may require prescription medication, occupational therapy, or physical therapy which your oncologist can prescribe as needed.
Will my ability to have children be affected? Is there anything I can do to preserve my fertility?
Some cancers and cancer treatments can affect your fertility, but you do have options. Before treatment, you may be able to freeze eggs or bank sperm. There may be steps you can take during treatment to protect your reproductive system as well. For more information, visit Fertile Hope at http://www.fertilehope.org/.
How can I keep myself as healthy as possible during treatment?
Your own immune system plays a big part in your fight against cancer. It is important to stay as healthy as possible while undergoing pancreatic cancer treatment.
Where can I find help with financial concerns?
Evaluate your financial situation as soon as possible. You will not want to deal with financial stress in the middle of treatment when you may not feel well.
Where can I find help with lodging or transportation?
When beginning pancreatic cancer treatment, planning ahead is key. Some treatment centers have lodging coordinators or social workers to help you with the logistics of treatment. Ask your nurse navigator for assistance if you are having trouble finding lodging or transportation.
What will my follow-up care plan include?
After you finish treatment, make sure you and your oncologist create a follow-up care plan. You will need to check for recurrence. You may also need follow-up care for long term side effects.
When can I call myself a survivor?
According to the National Cancer Institute’s definition of a cancer survivor, “a person is considered to be a survivor from the time of diagnosis until the end of life.”
If you develop any new problems or symptoms during treatment, tell your healthcare team immediately. You are not complaining. This is valuable information for your doctors.
Do not change your diet, start an exercise program, or take any new medications, including vitamins and supplements, during treatment without talking to your healthcare team first.
Coping with Cancer
With Your Caregiver
Your primary caregiver may be with you when you receive your pancreatic cancer diagnosis. Your primary caregiver may be your spouse, partner, adult child, parent, or friend. Your primary caregiver is the person who may come with you to appointments, take care of you after surgery or treatment, and support you throughout your cancer journey.
- Everyone reacts to the news of cancer differently. You may feel upset, shocked, or angry. It may take you some time to process the information. Your caregiver may or may not react the same way you do. Even if your caregiver does not react the same way you do, it does not mean that he or she does not care deeply.
- Establish your role and your caregiver’s role early. For example, will your caregiver be the one scheduling most of your appointments, or do you prefer to take an active role? Find what works best for you and your caregiver.
- Be open and honest with each other about how you both feel. Overly positive attitudes may hinder honest communication. It's okay to be upset.
- Encourage your caregiver to take time to care for his or her own physical and emotional well-being. Being a caregiver comes with its own hardships.
- If your primary caregiver is your spouse or partner, your intimate and physical relationship may change.
With Your Children
Children are very perceptive, no matter their age. While you may wish to protect your children by not telling them about your pancreatic cancer diagnosis, even young children may be able to tell that something is wrong. Not knowing what is wrong may cause them more stress and anxiety. Here are some tips to talk to your children and teens about your cancer diagnosis:
- Wait until your emotions are under control and decide what to say ahead of time.
- Tell the truth and answer questions honestly. Depending on your children’s ages, it may not be appropriate to give them all the pancreatic cancer facts, but do be truthful.
- Let them know what to expect. For example, let them know that after surgery you will need a lot of rest and may need to stay in the hospital. If your chemotherapy may cause you to lose your hair, let them know. Keep your children in the loop as much as possible.
- Explain to your children, especially younger children, that they cannot catch cancer.
- Let your children know that it is okay to cry or be upset. This may be especially important for your teens to hear.
- Tell teachers, babysitters, and others with responsibilities with and around your kids about your diagnosis in case they see behavior changes you may need to know about.
- Maintain normal schedules as much as possible.
- Let your kids help. Allow them to help with chores, and let them know that their help is important. Teens may want to take an active caregiver role. Let them do so, at appropriate levels.
- Look for support groups in your area. Many places offer support groups for children and teens whose parents have a cancer diagnosis.
- Know when to seek professional help. If your child begins to demonstrate unusual behavior such as angry outbursts, nightmares, or poor grades in school, ask your healthcare team for a recommendation for a counselor.
With Family and Friends
You may choose to keep your cancer journey private, or you may choose to share your story with others. The choice is yours. Remember when family, friends, coworkers, or other acquaintances ask about your diagnosis, they are genuinely concerned about your well-being. You can share with them as much or as little information as you like. These suggestions may help you talk about your diagnosis:
- Decide how much information you want to share before you start telling people about your diagnosis.
- If you chose to keep your journey private, make sure to let people know that you appreciate their concern, but you hope they respect your privacy.
- Choose someone close to you, like your caregiver, to spread the word about updates and treatment progress. After a long day of treatment, you may not feel like calling and texting people, but your friends and family will probably want to know how you are.
- If you want to share your story, consider starting an email chain or a Facebook group. This way you can update everyone with one message instead of needing to answer a lot of emails and phone calls.
- You can also create your own private website at MyLifeLine.org.
- When people offer to help with things, let them. Your family and friends could cook dinner, drive you to an appointment, or babysit.
- If you lose your hair due to treatment or have visible surgical scars, strangers may ask about your diagnosis. Have a response prepared. Again, you may share as little or as much as you like.