Every month, featured experts answer your questions about coping with cancer including specific answers to questions asked by caregivers.
For Any Cancer Diagnosis
- What is the recommended treatment and possible side effects?
- How could treatment affect other co-existing health issues?
- Is the goal longer survival, which may mean a more intensive treatment, or is it quality of life?
- Take notes at her appointments or ask if you can record the discussion
- During the appointment, ask her if she has questions
- Repeat and review the information after the appointment, allowing her time to process information
- Keep a calendar to record her appointments
- Use a notebook to keep track of symptoms and side effects
- Create a file for all paperwork related to her diagnosis, including copies of important records
- Compile a current list of all her medications and phone numbers/addresses of all of her health care providers.
- any medications being taken and their possible interaction with cancer treatments
- the person’s mobility, balance, and memory
- any nutritional needs or restrictions
- social supports, including who will be there to help with daily concerns like grocery shopping, cooking, and providing transportation to medical appointments.
- Caregiving for Your Loved One with Cancer
- Understanding and Managing Chemotherapy Side Effects
- Controlling Cancer Pain: What You Need to Know to Get Relief
- Your Health Care Team: Your Doctor is Only The Beginning
- What is the recommended treatment and side effects?
- How will the treatments affect other co-existing health issues?
- What is the goal of the treatment?
- What other treatment options are available?
- Obtain referrals for home health directly from his doctors and his medical team. Often the medical team can provide a list of home health providers in the area.
- Contact the local Department of Aging or local state Ombudsman’s Office and ask for referrals.
- Medicare’s Home Health Compare tool enables you to find and compare Medicare-certified home health care providers.
- Family Caregiver Alliance also has a Family Care Navigator tool where you can locate home health and various caregiver resources.
- Shop around: It’s important that your friend feel she and her father are getting the best possible care. I recommend interviewing at least two agencies and ask for several references. You can also check with your local Department of Aging and the Better Business Bureau to learn more about the different agencies and the quality of their care.
- Determine the services you require and find out how much they will cost.
- Does the agency take her father’s insurance? What cost will he be responsible for?
- Ask about any financial grants available to assist with the cost of home health care.
- Medicare has a page dedicated to financial resources.
- Eldercare also has resources and links for various financial resources including home health care.
Q. My mother is 85 and was told she has stage 3 cancer. She doesn't seem to understand exactly what is going on and is passive. We're not that pleased with her doctors. I don't want to be pushy, but how can we help her?
Challenges that may affect older adults and their ability to make health care decisions include how they process information, how they cope with the stress of the diagnosis, and how their medical team communicates with them. With this in mind, family support can play an important part in your mother’s care. I’d start by asking your mother if she would like your help, and if so, what areas she would like help with. This might include meeting with her medical team to discuss her treatment plan or helping her prepare for her appointments.
Questions to ask about her treatment include:
Ways to involve and organize your mother include:
Your mother’s medical team is one of the most important aspects of her care, and as a health consumer she has every right to receive quality care. It is essential that older adults and their loved ones be able to openly and honestly discuss their care with their doctors and any potential difficulties that may arise. For more guidance please read, “Doctor, Can We Talk? Tips for Communicating With Your Health Care Team”. If she is not comfortable with quality of care she is receiving, she may need to explore other options. Though this may seem daunting, your mother’s primary care doctor or even a local hospital can provide her with referrals.
Q. My dad is elderly and is scheduled to start treatment for cancer. We are concerned about his ability to tolerate treatment side effects given his age.
The single greatest risk factor for cancer is aging. Our population is living longer and cancer is a disease that occurs in older adults. There is no clear data, however, showing that certain cancer treatments, when appropriate, should not be offered on the basis of age. The only exception is when there are pre-existing health problems.
Chronic health problems unrelated to cancer — such as hypertension, diabetes, heart disease or arthritis — do need to be considered with regard to cancer treatment and its side effects. For an older adult, it is important that the choice of treatment plan takes into account his or her overall health status, including:
It is appropriate for you and your dad to expect to control treatment side effects. Before your father starts treatment, make sure his doctor knows about any medications he is currently taking for other health problems, and ask about what treatment side effects he should expect. In many cancer centers, there are health care specialists that will work with your doctor to help manage treatment side effects. Talk with your dad’s doctor about symptoms you and he are worried about. Don’t be afraid, embarrassed, or hesitate to ask questions, voice your opinion, and seek the care your dad needs and deserves.
For more information, read these CancerCare publications:
Our professional oncology social workers can also help people with cancer and their loved ones with the practical and emotional concerns arising from a cancer diagnosis. Contact us 1-800-813-HOPE (4673).
Q. My 77-year-old mom has been diagnosed with cancer. As a stroke survivor with diabetes, she is at high risk for surgery, which seems to be the preferred option for treatment. I don't feel like I am asking enough and/or the right questions. I am meeting with an oncologist for guidance. However, I want to be sure I am dotting all "i's" and crossing all of my "t's." Is someone available to speak with to help guide me in the right direction for starters?
When you and your loved one are facing a new diagnosis it can be overwhelming and difficult to know what steps to take. Meeting with an oncologist to discuss your mother’s treatment plan is incredibly important, especially given her multiple health issues.
Some questions to consider asking:
During the meeting with the doctor take notes or ask the doctor if you can record the meeting using a tape recorder or other recording device. If there is something you don’t understand don’t be afraid to speak up!
Your mother may also consider getting a second opinion. While some may feel uncomfortable bringing this up with their oncologist, medical staff understand and respect the difficulty of making treatment decisions and can often provide referrals for another opinion. They can also provide copies of your mother’s records so that tests don’t have to be repeated. No matter what you and your mother decide, communication with the medical team is key.
Please know CancerCare is here for you. Our oncology social workers are available to assist you and address the many issues that come up as you and your family go through this. We can help you with questions to ask your medical team and also provide support. You can contact us through our Hopeline at 800-813-HOPE (4673).
You will find more tips in our fact sheet, “Doctor, Can We Talk?”: Tips for Communicating With Your Health Care Team.
Q. My 69-year-old father is going through chemotherapy now and has little to no appetite and vomits up whenever he does eat. He is okay to drink meal-replacements such as Ensure. Should I mix in protein powder (like the kind you purchase for weight training) into these Ensure drinks to give him extra protein? Will this help him or will it cause a negative effect? Is there anything else I can do to help him have enough calories through the day?
While we are not medically trained at CancerCare, as oncology social workers we are trained in assisting you address concerns that accompany a cancer diagnosis. Nutrition is an essential part of your father’s health and integral part of his cancer treatment. It is important to bring these questions regarding his nutrition and also the difficult side effects he is experiencing to the medical team. Your father’s oncologist, physician assistant or nurse may have some beneficial medical advice to assist your father reduce side effects and maintain his nutrition. A registered dietitian can also be an important member of your father’s medical team and his oncologist can provide a referral if needed. Before you meet with the medical team make sure to write down your questions and concerns to assist you and also take notes during your meeting. This can be incredibly helpful so that you don’t forget what questions you want to ask and also have written notes of what the medical team said. Good communication with the medical team will increase your father’s quality of care. For more info read our fact sheet, “Doctor, Can We Talk?: Tips for Communicating With Your Health Care Team.
Q. My best friend is an only child and struggling to hold on to her job. Her elderly father has cancer and recently developed an infection following surgery. His doctors feel that he would do better at home with my friend acting as nurse, taking care of his wound, etc. Unfortunately, she has been ill herself and has already had to take too much time off of work. Her father's condition is not terminal, so hospice is not an option. Finances are limited. What options for in-home care do you recommend?
Finding home health care can be daunting, but there are some resources out there to help your friend get started. The first step is to locate local home health providers:
Once your friend begins to contact home health services she will need to determine who can provide the best services for her and her father:
Below are some links that may be helpful in finding financial assistance:
Finally, caregiving for your loved one, while rewarding, also comes with many challenges. One of the most important aspects of caregiving is actually caring for yourself. Caregivers often put their own needs aside; however, this can lead to many issues including decrease in physical and emotional health. Remember that when your needs are taken care of, you are better able to care for your loved one. Read more about caregiving in our booklet, Caregiving for Your Loved One With Cancer.
Know that CancerCare is here to help. We provide many services for caregivers including individual counseling, support groups, Connect Education Workshops and helpful information. Learn more about our caregiver services or call our Hopeline at 800-813-HOPE.
For Breast Cancer
Q. My mother was recently diagnosed with metastatic breast cancer and about 2 years ago, began to show signs of dementia. Can you refer me to resources regarding providing care to patients with dementia and cancer? My elderly father is the primary caregiver and I am an out of town caregiver.
Dealing with a dual diagnosis of dementia and cancer brings many challenges regarding care. Start by assessing both you and your father’s needs as caregivers and the needs of your mother. What do you and your family need help with? Areas to consider are personal care, household care, health care, and emotional care. It is also important to discuss with your mother what her preferences for care are as much as she is able. If she is not able to discuss this, you and your father will want to consider what she would feel comfortable with.
The next step is to find support. State and federal agencies are good starting points for information about local programs and services. You can find your local office through the Department of Health and Human Service’s Eldercare Locator. The Family Caregiver Alliance, also has a wealth of information on caregiver support, as well as a state by state listing of services available. It is important to remember throughout your mother’s care that support is important not only for patients, but also for caregivers. You and your father’s needs must be met, so you don’t become overwhelmed and exhausted. To learn about ways to take care of yourself, please read, Caregiving for Your Loved One With Cancer, and So Far Away: Twenty Questions and Answers About Long-Distance Caregiving.
For Lung Cancer
Q. My 68-year-old husband was diagnosed with lung cancer in 2004, had radiation and chemo, and is currently in remission. Since ending his treatment, his personality has changed drastically and he directs his anger towards me. Can chemo affect a person mentally?
Chemotherapy can affect a person’s mood, as can other medications such as steroids. It is important that you and your husband inform his doctor of changes in his mood to rule out any medical causes. The change in his personality may also be a sign that he is still struggling emotionally with his diagnosis and treatment. Cancer can be overwhelming and bring up many feelings from anxiety to anger to sadness. As your husband’s primary caregiver, those feelings may be directed towards you since you are the one he is closest to and trusts. If you haven’t done so already, letting your husband know how his feelings and behavior affect you is important. Seeking couple’s counseling is also a good idea if you are having difficulties communicating with each other.
The end of treatment often can lead to many strong and conflicting feelings. When a person is first diagnosed with cancer, he/she is often focused on learning about the diagnosis and getting through treatment. This can delay the emotional impact of cancer and feelings may come up once treatment ends, as there is more time to think about what has happened. For more information on coping post-treatment read, After Treatment Ends: Tools for the Adult Cancer Survivor.
Q. My 90-year-old grandmother was just diagnosed with lymphoma, but was told that because it is at an advanced stage, no treatment will be done. What should we expect?
Lymphoma is the term used to describe cancer of white blood cells, called lymphocytes, which are a crucial component of the immune system. As with any cancer, there are important factors in determining a patient’s prognosis. These include the type of cancer, the stage of the cancer, the age of the patient and the patient’s general health. It is also important to consider whether the cancer is a new diagnosis or whether it has recurred.
While it is not possible to tell you exactly what to expect, it is important to begin to plan for her care. Talk with her doctor and find out more details. For guidance, please read our publications, Communicating With Your Health Care Team and Doctor, Can We Talk?.
It will be helpful to develop a plan that includes all available family, social, and medical supports to care for your grandmother in body, mind, and spirit. You may also want to discuss with your grandmother what her wishes are regarding her care. It is important to have information about your grandmother’s health insurance or other coverage she may have and what medical and supportive care services they can provide during this time. Hospice should be considered and can provide support and services if your grandmother’s needs increase.
The Leukemia & Lymphoma Society provides specific information about lymphoma and offers support services provided through their local chapters.