When a person is diagnosed with cancer, it can seem everyone is focused, and rightly so, on that person’s physical well-being: treatments, side effects, doctor’s visits, tests. But we know there are other parts of life affected by cancer: self-image, work, family, friendships, and your approach to living. Oncology social workers understand these complex issues raised by cancer.
This booklet, based on CancerCare’s online column “Ask CancerCare,” presents a sampling of the many issues CancerCare’s oncology social workers help people address every day. We hope this information will encourage you to contact us for support with any concerns you may be facing related to your or your loved one’s cancer.
Q. How do I find doctors who specialize in treating my cancer type?
A. Finding a doctor who specializes in your cancer type can significantly improve the recovery process and cancer survivorship. It’s important to find a doctor who understands the intricacies and dynamics of living with your diagnosis. You want to find a doctor who regularly treats your diagnosis and can address the needs of people living with this type of cancer. A dermatologist, for instance, would be more informed about melanoma. Although a doctor’s personality should not impact treatment, it can be extremely helpful if we feel comfortable speaking with our doctor.
To find a doctor who specializes in treating your diagnosis, you may first want to consult with your primary care physician and request a referral. Your family members, friends or colleagues may know of a doctor who specializes in this type of cancer. A representative from your health insurance company may also assist you in seeking a specialized doctor. Speaking with your insurance representative would also help you understand your coverage and learn whether or not you would be allowed to go out of network to see a specialist. Understanding your doctor’s credentials and training can be helpful in making educated decisions regarding your diagnosis and treatment. Pay attention to a doctor’s credentials and don’t be afraid to ask about his/her education and training. Some doctors including dermatologists may choose additional training in their specialty.
When searching for a doctor, some questions to ask yourself include:
- Does this doctor have the appropriate education and training to address my type of cancer?
- Will this doctor listen to my needs and treat me with respect?
- Does this doctor clearly explain treatment options to me that I understand and encourage me to ask questions about my diagnosis and treatment?
- Do I feel as if I am an important part of the medical team?
Finding the right treatment facility for you is equally as important to finding the right doctor. Locating a comprehensive cancer center, for instance, may provide access to a number of doctors to whom you could reach out and learn about treatment options and alternatives for you to consider.
In discussing your diagnosis, questions to ask include:
- How large is the tumor and has it metastasized?
- Will surgery alone be able to remove the cancer or will I need additional treatment?
- What are the treatments available for my type of cancer?
- Are there any potential side effects related to my treatment?
- Am I at risk for a recurrence of this type of cancer or other type?
- How frequently will I have to follow up with you?
Answered by Glenn Meuche, MSW, LCSW
Q. I’ve just been diagnosed with cancer. How can I get information to help me make treatment decisions?
A. There is a great deal of information about cancer and cancer treatments, especially online. The challenges are how to find and evaluate information to make sure it is reliable, up-to-date, trustworthy and appropriate to your diagnosis and situation. For cancer information, The National Cancer Institute to speak with an information specialist at 1-800-4-CANCER.
To help you evaluate online information, keep these questions in mind:
- What is the purpose of the website? Is it educational or commercial—that is, is the site trying to sell you a product or service?
- What is the source of the information?
- Is the information evidence-based—that is, based on scientific research?
- Does the website provide contact information for individuals who are responsible for its content?
- Are the links relevant and appropriate for the site?
Once you have information, the next challenge is how to make sense of it. Ultimately, your doctor and health care team are best able to help you interpret information. Identify someone on the health care team you are comfortable talking to. Then:
- Write down your questions before your doctor visit
- Ask questions if you don’t understand what the doctor says
- Take notes and if possible, bring someone with you who can assist you
Interpreting medical tests requires that you consult with your health care team. Make sure you ask for copies of lab tests, biopsy results, X-Rays, ultrasounds, CAT and PET scans, or MRIs. Schedule time with your doctor and health care team to review all test results, and their implications for your treatment and care.
Answered by Carolyn Messner, DSW, OSW-C, FAPOS, LCSW-R
Q. I’m thinking of getting a second opinion. How should I approach this? Do I tell my doctor?
A. People who are diagnosed with cancer often experience a wide range of emotions–anxiety, sadness, anger, fear, confusion, as well as a sense of urgency to get into treatment as soon as possible. Usually with a new diagnosis there is a period of time, depending on the cancer type and stage, before treatment begins. During this time, getting a second opinion is considered a routine, essential and necessary component of one’s health care plan. Many patients feel reluctant and resistant to seek a second opinion. Studies have shown that most patients and caregivers are concerned that asking their doctor about a second opinion will create an uncomfortable relationship with that doctor, which may negatively affect their medical care. Other patients may be confused by the complexity of the health care system, are too overwhelmed by their diagnosis or too intimidated, or are not aware that they have that right to a second opinion.
However, most medical professionals expect a patient to get a second opinion. In fact, some insurance companies recommend, and even require, a second opinion.
Discuss getting a second opinion with the doctor who diagnosed you. Most doctors welcome a second opinion. It provides them with either confirmation of their diagnosis and treatment, more details about their diagnosis, additional treatment options, or recommendations for alternative diagnoses and treatments. Your doctor may have suggestions or referrals. If not, contact a medical society associated with your cancer, academic medical institution or a National Cancer Institute designated facility. It is strongly advised that one go for a second opinion at a different medical institution, since this will involve different clinics and pathologists. If your doctor is not open to, or responds negatively to the idea of a second opinion, you may want to consider whether this is the doctor with whom you want to work.
Here is a list of situations where a second opinion may be important:
- You have a rare, unusual, terminal or incurable cancer;
- You feel uncomfortable with your doctor, the diagnosis or you need confirmation;
- Your health insurance requires it;
- You want the medical opinion of a specialist for your type of cancer;
- The treatment offered has side effects or risks that you find unacceptable;
- The treatment options will result in unacceptable or unreasonable demands on your life and your family;
- Your doctor’s treatment goals are different from your own;
- You are interested in clinical trials or alternative therapies;
- Your cancer is not responding to your current treatment.
The American Medical Association’s Patients’ Bill of Rights states that “The patient has the right to and is encouraged to obtain from physicians and other direct caregivers relevant, current, and understandable information concerning diagnosis, treatment, and prognosis.” Obtaining a second opinion is regarded as a right. CancerCare’s professional oncology social workers can answer your questions about getting a second opinion. To speak with a professional oncology social worker, call 800-813-HOPE (4673).
Answered by William Goeren, MSW, OSW-C, LCSW-R
Q. How do I talk to my doctor about the pain I am experiencing?
A. Pain is a message your body sends saying that it needs help. Pain medications can offer you relief. But first, you’ll need to tell your doctor how you feel. The more accurately you can describe your pain to your doctor, the better your doctor will be able to help you. Rating your pain on a scale from zero (no pain) to 10 (worst pain) can be an effective way of measuring and describing your pain to your doctor. To make sure you receive effective pain management:
- Tell your doctor immediately about any pain you are experiencing. NEVER allow your pain to build up over time. Pain needs to be monitored and assessed at each doctor visit.
- Write down any questions you may have about your pain and how to manage it BEFORE your visit to your doctor. And, be sure to write down the answers your doctor gives you.
- Bring someone with you to your appointment. Having another person there who can give you emotional support, ask questions, and remember information can help you better address and manage your pain.
- Be specific and describe your pain in detail to your doctor. Don’t assume your doctor knows how you feel. Tell your doctor what your pain feels like, when it is at its worst, and when it appears to ease up, if it does.
- Keep a pain diary or journal. Record such things as when and where the pain occurs, what makes the pain worse, what provides relief, and how the pain affects your quality of life. Remember, you are the expert on your pain, and your doctor is there to help you. Effective pain management is about teamwork. Get involved and be an active participant in your care.
Answered by Glenn Meuche, MSW, LCSW
Q. Since I’ve been diagnosed, I’ve been anxious and sometimes feel overwhelmed by my thoughts, which I can’t seem to “turn off.” Are there any ways I can help myself to feel more calm?
A. Anxiety is a natural emotional experience for everyone. When someone has to cope with a cancer diagnosis, anxiety (or worry) can increase, intruding on an individual’s ability to regain a sense of calm, clear his or her thoughts and feel more control over the issue at hand. Chronic anxiety can lead to fatigue and depression over time, so it is important to find techniques that can offer relief from the stress of cancer, even if just for short periods of time.
When confronted with crisis, our bodies trigger a “fight or flight” response. Part of this physical response is rapid, shallow breathing, which increases blood flow through the heart and puts extra oxygen into our bodies. A person under chronic stress will continue to take shorter, more shallow breaths, which will in increase stress and create a continual state of anxiety.
Here’s a simple breathing exercise that can help calm you:
- Sitting down, place one hand on your chest and the other over your navel.
- Take three breaths and observe your breathing. For most people, the chest area tends to rise more than the abdomen.
- Now, take in a deep breath and extend your abdomen. Picture your lungs as long, narrow balloons, filling up from the end to the front; and from the bottom to the top.
- Hold the breath and silently count to five; then, exhale loudly.
- Do this for three breaths and then sit quietly for a moment. If you feel lightheaded, hold the next breath for a shorter time. Most people find there is a calming feeling that follows.
The beauty of this exercise is you can do it anywhere, anytime. The goal is to reduce stress by returning yourself to a natural state of breathing.
You can find more relaxation techniques in CancerCare’s fact sheet, “Relaxation Techniques and Mind/Body Practices: How They Can Help You Cope With Cancer.”
Answered by Richard Dickens, MS, LCSW-R
Q. What are support groups and how can they help me? How do I know if they’re right for me?
A. A cancer diagnosis can be very isolating. Regardless of whether you are a patient or a caregiver, you can be immersed in reacting and adjusting to various aspects of the disease. The responsibility to find, manage and pay for care can be hugely overwhelming. It’s hard to feel hopeful, or have any sense of confidence in your ability to cope or make appropriate decisions, if you are feeling small and powerless and very much alone in the experience. That’s where a support group can be helpful. It provides a chance to meet and interact with other people who can understand your experience. While friends and family members might be uncomfortable, maybe feeling useless or scared, not knowing what to say or do, the members of the support group, with the guidance of a trained moderator, can be there with you in your process.
In addition to lessening one’s sense of isolation, support groups can be a source of valuable information. Not surprisingly, members find that sharing resources and coping skills can be highly rewarding, whether on the giving or the receiving end of the transaction. Topics often include where to find reliable medical information, how to communicate with doctors, challenges of treatment and coping techniques. Much of one’s experience in a support group depends on the chemistry of who is in the group and how it is moderated. One thing common to most groups is the potential for strong emotional expression, which can be uncomfortable for some people. Other factors to consider are how you feel sharing things about yourself in a group of people, and whether or not you can meet any attendance guidelines the group might have.
Bottom line? If you are feeling alone and needing information and emotional support, a group might be a valuable way of connecting with people to help you cope with your situation. If you have questions, reach out to the moderator so you can get the information to make an informed decision.
Answered by David Horne, MSW, LMSW
Q. Are there books written specifically for children that can help them understand and cope with a parent’s cancer diagnosis?
A. After talking to your child about a cancer diagnosis, books can be a helpful follow-up to encourage learning more about cancer, exploring feelings and asking questions. It can also be a nice opportunity to spend quiet time together or give your child some autonomy to learn independently. Books or other publications are available for different age groups and developmental stages. It is important to choose books that are appropriate for your child by not only looking at the recommended age on the book, but also by looking through the book in its entirety.
CancerCare offers publications and fact sheets:
- Mom or Dad Has Cancer… Now What?
- Helping Children Understand Cancer: Talking to Your Kids About Your Diagnosis
- Helping Teenagers When a Parent Has Cancer
- Helping Children When a Family Member Has Cancer (booklet)
Suggested Books for Children
- “Mom and the Polka Dot Boo Boo” tells a story about a young mother’s journey through breast cancer (ages 2-5)
- “Our Mom Has Cancer” helps children understand and cope with a parent’s cancer (ages 5-12)
- “Our Mom is Getting Better” and Our Dad is Getting Better helps children understand a parent’s special needs when recovering from active treatment (ages 5-12)
- “Because Someone I Love Has Cancer” offers activities to help children navigate a loved one’s cancer experience (ages 6-12)
- “A Tiny Boat At Sea: How to Help Children Who Have a Parent Diagnosed With Cancer” by Izetta Smith (all ages)
- “Our Family Has Cancer Too!” By Christine Clifford. A cartoon illustrated book that describes a family’s experience with cancer and how they coped. Ages 3-16.
- “Life Isn’t Always a Day at the Beach” by Ganz High Five Publishing. A cartoon illustrated workbook for kids to color themselves to help kids learn and understand their feelings about their parent’s cancer. Ages 4-13.
KidsCope has a free comic book called Kemo Shark to help kids understand cancer and chemotherapy.
The National Cancer Institute has excellent free booklets to help teens cope with cancer:
- When Your Parent Has Cancer: A Guide for Teens
- When Your Brother or Sister Has Cancer: A Guide for Teens
If you choose to share books with your child about cancer, be sure to check in with them to see if they have questions about what they read or if they want to talk about it. Our staff of professional oncology social workers are knowledgeable in children’s issues related to a parent’s diagnosis, sibling or other loved one. To speak with a social worker, call us at 800-813-HOPE (4673) or email email@example.com.
Answered by Victoria Puzo, MSW, LMSW
Q. My teenage son has had body-image issues since having cancer. His treatments caused him to gain weight and surgeries left him with scars. How can I help him deal with this?
A. Body changes may make your teen feel uncomfortable about how they look. These feelings may be strong enough to make them want to avoid their friends, school, public places or having their picture taken. Adolescence is a time where teens engage in social comparisons, often comparing themselves to their peers and friends. It is important to validate your son’s concerns regarding his body image. Self-esteem is very fragile and is often impacted by not only how we view ourselves, but how others view us as well.
Keep an open line of communication with your son about this topic. Explain to him why his treatment is so important even though it has caused him to gain weight. Try to help him understand why his body is changing so that he can understand these changes are not permanent. You may also want to encourage him to engage in some types of physical activity when he is feeling up to it (activities approved by his oncologist or physical therapist). Also, you may want to consult with a nutritionist to create helpful and healthy eating plans while on treatment. It is important for your son to understand the reason behind his surgeries and scarring. Many times, a conversation before surgery can help teens prepare for body changes so that they are not such a shock. However, after the surgery site has healed, you can experiment with different types of make-up and concealers (there are special ones for scars). Also, different clothing styles may be able to cover the areas that your son is not comfortable exposing.
You can support your son during this time by doing some of the following:
- Providing an outlet to express his feelings (art, music, writing, etc.)
- Listening if and when he wants to talk about body image changes
- Letting him know that you understand what he is feeling and that it is okay to feel the way that he does
Creating a safe space for him to share what he is going through is important. If necessary, reach out to your son’s social worker through the hospital or a child life specialist. It is possible that outside support is necessary in order to make your son feel heard.
Teens Living with Cancer has information to help teens learn about cancer, its treatment and how to cope. This site’s Dealing with It section talks about body issues, school, family and friends, and it helps teens connect with other teens who have cancer.
If you need additional support, feel free to reach out to CancerCare’s Hopeline (800-813-4673). We can provide psychosocial support as well as local referrals as needed.
Answered by Sarah Paul, MSW, LMSW
Q. How can I support a loved one who has cancer without saying something stupid or wrong that would upset her more?
A. It is common for family and friends to be unsure of how to best help support a loved one with cancer. There are so many different ways to be supportive, and everyone has a different set of needs as they cope with a cancer diagnosis – this means that there’s no one “right” way to provide support. However, you can’t know what your loved one needs or how you can help if you aren’t acknowledging her experience with cancer.
Your loved one probably has many mixed feelings given the news of her cancer diagnosis; keep in mind that the diagnosis itself is upsetting in its own right. That said: it’s okay to ask her how she is doing and to let her know that you are available to talk or listen when she needs it. Opening the doors for communication will give her an opportunity to let you know whether she is comfortable talking about her feelings or not, which may also help you to better gauge how to be helpful. Regardless of where she is with this, she will likely appreciate your willingness to listen. And if even if she’s not “there” yet, knowing that you’re open to this type of conversation may leave her more willing to take you up on your offer when she is ready. If you are still unsure of what to say, it may be helpful to read our fact sheet, What Can I Say to a Newly Diagnosed Loved One?
People with cancer also often express a need for “normalcy,” so don’t forget to have conversations with her about regular things like television, movies, books and other current events, just as you would prior to her diagnosis. Talking about more simple things may give her a break from thinking about cancer all the time – for many people with cancer, this is helpful.
Answered by Carly O'Brien, MSW, OSW-C, LCSW
Q. I can’t afford to pay for my cancer medication. Is there help to pay for them?
A. The cost of your cancer medication may be a barrier to adherence or taking your pills on schedule. Because of these costs, some patients try to stretch out their supply of pills. Instead of taking them as the doctor prescribed, they take them every other day so that they do not run out of their pills so quickly. If you find yourself thinking of doing this or you are doing this, please speak with your doctor to get financial help. It is very important that you take your pills the way your doctor prescribed them. This way you will get the best results from your treatment.
There are organizations that help cancer patients with the costs of their pills. Co-payment organizations and patient assistance programs help individuals who cannot afford their medications. The following resources may be able to help you:
The website of the Cancer Financial Assistance Coalition (CFAC) (www.cancerfac.org) has a searchable database of national and regional organizations that provide financial assistance and other services for people with cancer.
NeedyMeds helps patients without prescription coverage by providing information about patient assistance programs that provide prescription medications at no cost.
CancerCare Co-Payment Assistance Foundation (866-552-6729) provides co-payment assistance to patients who meet their guidelines as well as guidance and referrals for additional help.
Patient Access Network (866-316-7263) assists patients who cannot access the treatments they need because of out-of-pocket health care costs like deductibles, co-payments and coinsurance.
Patient Advocate Foundation (800-532-5274) offers a co-payment relief program and seeks to ensure patients’ access to care.
Partnership for Prescription Assistance (888-477-2669) matches patients to programs offering free or low-cost prescription medicines.
And finally, CancerCare’s professional oncology social workers can also refer patients for financial assistance and to organizations that offer free counseling services.
Answered by Carolyn Messner, DSW, OSW-C, FAPOS, LCSW-R