- What can my caregiver expect to experience emotionally? Caregivers
Being a caregiver can hold a lot of meaning and personal satisfaction, but it is important to be aware that caregivers experience emotional pain, sadness, and frustration as well. They may experience caregiver fatigue and, if so, might look for a local or online support group to assist with navigating the ups and downs. Ask you nurse if there are specific things that they think might help your caregiver as well.
- Who should I consider to have as my caregiver during cancer treatment? Caregivers
Your primary caregiver should be a trusted spouse, partner, parent, or adult child. You can also consider close friends, co-workers, or neighbors to assist.
- What tasks might be required of my caregiver? Caregivers
If you are not feeling well, your caregiver may need to be available to drive you to and from your clinic appointments, lab draws, and infusion visits. If the treatment you are receiving increases the risk of serious side effects, you may need to have someone available around-the-clock in case you need urgent help or deciding if you need transportation to the ER. At some or all stages of your treatment, you may need a caregiver in home 24 hours a day to help you with eating and bathing until your are feeling better. Caregivers often play an important role in helping you keep track of your scheduled medications throughout treatment. Ask your nurse what other ways your caregiver may be able to help.
- Are there any programs that I can use to help minimize the cost of my treatment? Cost
If your cancer treatment is going to be costly, there may be financial or patient assistance programs available to you to help lessen out-of-pocket costs. Ask your nurse if any of these are available and if someone such as a financial counselor can help you. You may qualify for financial or patient assistance programs, or supplemental insurance. If you do not know your pharmacist, your nurse may be able to connect you with one that may help reduce the cost of medications.
- How long will it take to get results back in order to make a final diagnosis? Diagnosis
- Depending upon the amount of information that is needed for diagnosis, how long it takes to perform certain laboratory tests, and how long it takes to get all of the information back, the total time to diagnosis may vary. Your nurse or doctor can help give you an estimate of how long it will take, but may not be able to give an exact answer in some cases because certain tests may be sent to a variety of specialized labs. A key component to receiving a final diagnosis depends upon whether all tests have been completed.
- What resources can I use to help learn more about my diagnosis? Diagnosis
- How will I find out about the results and the final diagnosis? Diagnosis
Results of your tests may be given over the phone or in person during a follow-up clinic visit. Be sure to ask the clinic staff how you will find out this information. Once a final diagnosis is made by your doctor, your nurse should be able to find this information for you in your chart.
- What kinds of foods should I eat to prepare for treatment? Healthy Diet
Before treatment, ask your nurse if the specific treatment you are receiving is likely to change the way food tastes or if you are likely to lose weight. Now might be a good time to reevaluate what you eat on a daily basis. If you eat a lot of sugary or fatty foods, it would be good to eat more wholesome foods such as vegetables and fruits. Remember, it is not always what you are eating, it is what you are NOT eating that matters as well. Fruits and vegetables may contain valuable cancer-fighting compounds that may help you heal faster. If your healthcare team advises that you avoid vegetables, ask them for the written information that supports this recommendation.
- What resources can I use to help me make better choices regarding my diet as I begin cancer treatment? Healthy Diet
- Many oncology clinics have a dietician available to help you make positive changes in your diet. If one is not available, your nurse may be able to give you appropriate resources to help you make safe and positive dietary changes.
- If I have to spend a long time at the infusion center, should I bring food with me? Healthy Diet
Some cancer treatments take several hours to complete causing you to spend a significant part of your day in the infusion center. In some cases, you may be at the infusion center when it is time to eat. Ask your nurse if food is typically provided to patients in the infusions center and if not, what the policy is for patients who want to bring food with them. A tablet or computer, or a good book often helps the time go by faster as well.
- Will I need to start any new medications? Home Medications
There may be several medications that need to be started for anti-cancer therapy. Some of these medications may help you to avoid possible side effects from treatment and are therefore extremely important. Ask your nurse about the new therapies you are starting and why you need to take them. Knowing what they are, how they work, how often they need to be taken, and the dosages will help keep you safe.
- What kind of information should I have ready when I call a hospice program for information? Hospice
The referral line will likely need to know the diagnosis, the current status of the disease, current medical treatments, where you are living, what are the current goals of care, and insurance information, if any.
- If I decide to enroll with hospice, what therapies will I have to stop? Hospice
When goals of care are no longer aimed at treating the disease and are more focused on making patients comfortable, some cancer medications may be stopped. Typically these are medications that may be causing side effects or are medications that may no longer offer benefit to make someone feel better. If you are considering a treatment that is unlikely to make the cancer go away and are considering an approach aimed at making you feel better now, ask a hospice nurse to help you with this decision, They can tell you what medications you are allowed to continue taking once enrolled in a hospice program and which medications are likely to be stopped. No decisions need to be made right away and you lose nothing by having the conversation.
- What kind of services do palliative care or hospice nurses provide at home? Hospice
To get a better idea of what palliative care and home hospice services are typically offered, ask your clinic nurse if he or she can arrange a meeting for you to speak directly to one of these nurses in person or over the phone. They can give information on how palliative care and supportive care hospice services help to improve quality of life.
- At what point should I start considering comfort care or hospice services? Hospice
Often times people enroll in comfort care and hospice services at a time that is too late to offer the full benefits. Ask your nurse to connect you with a program early on for information. Gathering information does not mean you need to stop treating the cancer and will leave you more prepared to identify the optimal time to change gears and focus on quality of life. Many insurance plans cover supportive care, palliative care, comfort care, and hospice care programs for individuals who meet criteria.
- What should I do if I'm not a person who likes to ask for help? Mindset
Your nurse wants to make your life easier, but won't be able to unless you tell him or her what you are struggling with. Know that most health care professionals genuinely want to help you and the questions you ask now will save both you and them time by preventing problems down the road. If you can change your mindset and begin asking for assistance early, it will help them and it will help you. Problems may be able to be prevented and everyone wins!
- Which lab values are most important for me to keep track of? Monitoring
This depends upon your specific treatment, but in general, you should understand the normal ranges for your white blood cells, hemoglobin, platelets, serum creatinine (kidney function), and liver function tests (bilirubin, AST, ALT, Alkaline phosphatase). Your nurse may be able to help you understand what happens if your lab results are not within the normal ranges for these specific tests.
- Is it important to keep good records of my laboratory results? Monitoring
It is always a good idea to keep good records during your treatment course. Your nurse can help you get the records that you need.
- Do I have to come to the clinic for labs or can I get them done at a facility closer to home? Monitoring
Some labs may need to be done at the clinic since not all laboratories have the ability to do them, but some routine labs could be done at a laboratory closer to home to save you a trip to clinic if it is a long drive. If you are interested in getting labs done closer to home, ask your nurse if this would be possible.
- What side effects might require a trip to the emergency department? Side Effects
Some side effects can be life-threatening and need to be treated right away! Ask your nurse what side effects can be life threatening and if they occur, need to be treated at the nearest or emergency department (ED) or the emergency room (ER) designated by your health care team.
- If I experience an infusion-related reaction to my treatment, how will it be managed? Side Effects
Infusion reactions can be common with certain treatments and can be managed in different ways. If a reaction occurs, nurses will first stop the treatment, then call your doctor for instruction on how to proceed. Ask your nurse to give you information on how an infusion reaction would be managed if it occurs.
- If I have an issue after normal clinic hours, what phone number do I call? Supportive Care
Serious issues can arise anytime of the day or in the middle of the night. Ask your nurse what on-call phone number you need to speak to a doctor or other healthcare professional after hours.
- What type of intravenous (I.V.) access is best for this treatment? Treatment
There are many ways to infuse treatment, including a peripheral I.V. line, a port, a PICC line (pronounced 'pick'), a tunneled catheter, and others. Your doctor, nurse, and sometimes pharmacist will work together to determine what is best for you.
- If I'm afraid to start treatment, who is the best person to talk with? Treatment
Your nurse may have experience helping other patients who have received the same treatment recommended to you. If they do not have experience, ask your nurse to schedule another appointment with your Doctor to answer questions. You can also ask your nurse if a social worker is available to talk to. They may be able to help you navigate through many of the fears of starting treatment and help you take the proper steps in addressing them.