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10 Tips for Caregivers

Written by Sarah Vammen
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A man hugs his wife as they stand inside a sunlit greenhouse

This blog was originally published in November 2015 and was updated for relevancy.

Caregivers to someone with cancer spend an average of 8 hours per day providing care to their loved one. The demands of caregiving depend on several different things — stage of disease, types of symptoms experienced, treatment side effects, and more. A caregiver’s response to the cancer diagnosis, treatment, and journey itself can be just as important as how the patient responds. This makes the need for physical, social, and emotional support for caregivers essential.

Here are 10 tips to help caregivers find balance, support, and connection.

1. Find your support system

When a friend or loved one is diagnosed with cancer, it’s an emotional time. Sometimes it can be difficult to talk with your loved one about your feelings, because you both have so much going on. Many find one of the best ways to cope with stress, uncertainty, and loneliness is to talk to others who share similar experiences. To find your own support system, explore Cancer Support Community’s partner network and find a location near you. We have over 170 locations worldwide, with programs that include support groups, yoga classes, and educational workshops.

You can also connect with others like you on our discussion board for caregivers. Share your unique experiences and offer insights, coping strategies, and inspiration.

“People talk about a caregiver, but you don’t really know what a caregiver is until you’re really in that role…I learned that a caregiver wears many hats: listener, observer, protector, planner, anticipator, the backup brain to the patient, the organizer, the strong one, the levelheaded one. The caregiver is the go-to person all the time…I quickly realized that I could not do it all and that I needed help.”

–  Sheri, bereaved/former caregiver for a close friend

2. Gather information

There is truth to the phrase “Knowledge is power.” There’s no way to completely grasp the ups and downs of a cancer diagnosis and treatment — and you shouldn’t be expected to. Being armed with knowledge may help you accommodate your loved one’s needs and help you know what to expect.

The Cancer Support Community’s Helpline is here to help by offering free navigation for cancer patients or their loved ones. Our navigators can be reached toll-free at 888-793-9355 or online via our live chat service Monday-Friday from 9 a.m.-9 p.m. ET, and Saturday-Sunday from 9 a.m.-5 p.m. ET.

3. Recognize a “new normal”

Patients and caregivers alike report feeling a loss of control after a cancer diagnosis. Many caregivers are asked for advice about medical decisions or managing family finances. Some caregivers also need to take on new day-to-day chores. It is likely that your tasks as a caregiver will create new routines—after all, you’re taking on a new role in your loved one’s life as well as your own.

Maintaining a balance between your loved one’s disease and the daily activities of your own life can be a challenge. It may be helpful to identify the parts of your life that you can still control, such as your own health and relationships. In doing this, you will be able to create a strategy for integrating new routines with old ones. It may also help to acknowledge that your home life, finances, and friendships may change for a period of time. Sometimes the laundry might not get done, or maybe takeout will replace home cooking. Try to manage each day’s priority as it comes. Take a deep breath and realize that the support you provide is priceless.

CAREGIVING TIP: Make a list of all of the names, phone numbers, and email addresses of everyone on the cancer care team and put it in a place where it’s readily available, should you need it. Make copies for anyone who is supporting you in your caregiver role.

4. Relax your mind, recharge your body

It can be easy to feel overwhelmed by the tasks of caregiving. Mini-breaks are an easy way to replenish your energy and lower your stress. Try simple activities like taking a walk around the block or closing your eyes for 10 minutes in a comfortable chair. You are working hard to provide and secure the best care for your loved one. Time spent recharging your mind and body will allow you to avoid depression, major illness, or burnout.

5. Take comfort in others

It’s common for many caregivers to feel a loss of personal time over the course of their loved one’s illness. Keep in mind that while you are taking on new and additional responsibilities, you are still allowed a life of your own. Many seasoned caregivers advise that you continue to be involved with your circle of friends and family.

6. Plan for the future

A common feeling among caregivers and people with cancer is uncertainty. It’s hard to know what the future holds. While planning may be difficult, it can help. Try to schedule fun activities on days when your loved one is not feeling the side effects of treatment. You can also give yourselves something to look forward to by planning together how you will celebrate the end of treatment, or a portion of treatment.

Planning for a future in the long-term is also important. All of us, whether we have been diagnosed with cancer or not, should have in place necessary paperwork such as healthcare agent, power of attorney, and a will. You can ask your loved one if he or she needs, or wants, assistance. Having essential paperwork under control will allow you to have peace of mind.

7. Accept a helping hand

It’s okay to have “helpers.” In fact, you may find that learning to let go and to say “YES!” will ease your anxiety and lift your spirits. People often want to chip in, but aren’t quite sure what type of assistance you need. It’s helpful to keep a list of all caregiving tasks, both small and large. That way, when someone asks “Is there anything I can do?” you are able to offer them specific choices.

One simple way to organize a helping network is to create a MyLifeLine Friends & Family Site for your loved one. This free service from the Cancer Support Community allows you and your loved one to connect with family members, friends, and others in your support network. When you create a Friends & Family site, you gain access to a tool called the Helping Calendar. You can use this tool to coordinate help for a variety of events, from rides to doctor’s appointments to meals, childcare, and more.

8. Be mindful of your health

In order to be strong for your loved one, you need to take care of yourself. It’s easy to lose sight of your own health when you’re focused on your loved one. But if your own health is in jeopardy, who will take care of your loved one? Be sure to tend to any physical ailments of your own that arise. This includes scheduling regular checkups and screenings. And, just like your mother told you, eat well and get enough sleep.

Visit our virtual Kitchen, where you can explore recipes and healthy cooking videos. These recipes were created to support the nutritional needs of people impacted by cancer, but anyone can enjoy their health benefits.

9. Consider exploring stress-management techniques

Even if you’ve never practiced mind-body exercises before, you may find that meditation, yoga, listening to music, or simply breathing deeply will relieve your stress. If this interests you, seek out guidance or instruction to help you become your own “expert” on entering into a peaceful, rejuvenated state.

Mind-body (or stress-reduction) interventions use a variety of techniques to help you relax mentally and physically. Examples include meditation, guided imagery, and healing therapies that tap your creative outlets such as art, music, or dance. For help with relaxing and unwinding, visit our virtual Mind Body Studio for yoga lessons, gentle exercises, and meditation videos.

10. Do what you can, admit what you can’t

No one can do everything. It’s okay to acknowledge your limits. Come to terms with feeling overwhelmed (it will happen) and resolve to be firm when deciding what you can and cannot handle on your own, because no one should have to face cancer alone.

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What We Can Learn From Jimmy Buffett’s Battle With Merkel Cell Carcinoma

What We Can Learn From Jimmy Buffett’s Battle With Merkel Cell Carcinoma

Written by Obi Faluro
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Palm trees rise up toward a blue sky on a tropical beach

Some of Jimmy Buffett’s most popular songs evoke the sunny mood of tropical beach life. (Photo by Roberto Nickson for Unsplash.)

He lived his life like a song till the very last breath and will be missed beyond measure by so many.

www.JimmyBuffett.com

Jimmy Buffett fans across the world are mourning the loss of the iconic “Margaritaville” singer, who passed away September 1. He was 76. News media outlets reported that Buffett had been battling an extremely aggressive and advanced form of skin cancer called Merkel cell carcinoma (MCC).

MCC is an uncommon but serious type of non-melanoma skin cancer. For most people, MCC looks like flesh-colored or bluish-red lumps. Skin changes normally show up on the face, head, or neck, but they can happen anywhere on the body.

Finding MCC can be difficult because it does not always look the same. It can often be mistaken for other skin issues. It is usually painless, so it can go undetected for a while.

Am I at risk for MCC?  

There are many things that can increase the risk of MCC. In most cases, a virus affecting special skin cells — called Merkel cell polyomavirus — is linked to Merkel cell carcinoma. Other risk factors include spending a lot of time in the sun, having other skin cancers, older age, and having a lighter skin color. That being said, anyone of any complexion can get skin cancer.

 

How Is Merkel Cell Carcinoma Diagnosed & Treated?

Some of Buffett’s most popular songs, like “Margaritaville” and “Cheeseburger in Paradise,” celebrate sunny places. Here are some simple ways you can enjoy the sunshine and your time outdoors while staying protected:

  • Stay out of the sun when it is at its strongest and hottest (10 a.m.-4 p.m.)
  • Use hats, sunglasses, and other protective clothing to block UV rays.
  • Use a minimum of SPF 30 sunscreen, even if it’s cloudy. Make sure to reapply, especially when swimming or sweating.
  • Take note of skin changes; even small changes can be concerning.

Here’s What to Look for When Doing Skin Checks 


But I thought skin cancer wasn’t that bad?

A common misconception is that skin cancers aren’t dangerous. MCC, among other types of skin cancer, can spread to other parts of the body (metastasize), including the lymph nodes. As cancer spreads, it becomes much more difficult to treat, making it life-threatening. The key to survivorship is early detection and treatment.

 

Buffett, who battled MCC for 4 years, continued to perform after his diagnosis and throughout his treatment. The resilience of his experience sheds light on the importance of early detection and ignites hope for new advancements in treatment.

MCC is rare, but it should be taken seriously. Knowing what causes it, how to spot it, and how to protect your skin can make a big difference. Watch for skin changes and do not hesitate to see a doctor if any concerns arise. If you or someone you know has been impacted by a cancer diagnosis, we are here to provide support at any stage.

 

Watch this 13-minute guide to understand more about advanced non-melanoma skin cancer, including types, diagnosis, and treatment.
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Erma’s Caregiver Story: The Extent of a Support System

Colorful umbrellas strung up in the sky

Stock photo by Ulises Baga for Unsplash

MyLifeLine provided Erma and her husband a way to share treatment updates with their personal support network, all in one place.

 

When Erma’s husband Shelby was diagnosed with stage 4 colorectal cancer, saying they were both stunned would be an understatement. Shelby was an active and healthy individual who had regular physicals and checkups. They thought they were doing everything right when their lives were turned upside down.

At the beginning of Shelby’s diagnosis, Erma recalled that it felt very personal. “You start out in the beginning like, ‘Why me? Why me, Lord. Why did God pick on me?’ That has all changed now. We’ve worked through that. It’s not like life picked on you. Life just happened.”

It took Erma some time to get to the point of acceptance of what she and Shelby were enduring. She had to take on new roles and responsibilities after her husband’s cancer diagnosis and Erma was left in charge of their dog, house, vehicles, insurance, driving, making sure bills were paid and all of her husband’s appointments were booked while he focused on his cancer diagnosis.

In addition to all her other responsibilities, she also had to update friends and family about Shelby’s condition. Each of these new tasks that came with her husband’s diagnosis began to overwhelm Erma and she realized she needed help.

“I realized shortly, within the first few months of his chemo treatment, that I somehow had to shake the feeling that was still a hold of me because my husband was totally zoning out,” Erma reflected.

Erma began seeing a counselor through her husband’s cancer center. She worked through her struggles with Shelby’s diagnosis and her new responsibilities as a caregiver, and she came to terms with what she was facing.

During a wait for one of her husband’s many doctor appointments, Erma noticed a postcard sitting next to her. It was about MyLifeLine, CSC’s online support community for people impacted by cancer. Erma picked up the card, put it in her purse, and went online within the next couple days to give it a try. She was overwhelmed with updating friends and family of Shelby’s condition through email. Today she sees MyLifeLine as an important part of their cancer journey.

“I almost look at MyLifeLine as part of his treatment. Whatever happens to him, MyLifeLine gets updated,” Erma said. “I felt more connected. I felt the support. I felt the love from everyone we knew. It changed my whole outlook, truly.”

Erma has some advice for other caregivers. “You as an individual must have a support system. Secondly, you must learn how to use it. My support system was there from the beginning. I just didn’t think I needed it. People would ask me how I was doing and I would always say ‘I’m good, I’m fine, just a little tired,’ when in reality I was drowning.”

Once Erma started leaning on her support system and using it, she began to understand what she was up against. The support has been constant for Erma, and she said it has truly made a difference.

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How to Care for Your Pet When You Have Cancer

CatDogOutside

Photo by Andrew S on Unsplash

Are you worried about taking care of your pet and staying safe as you cope with cancer? First, take a deep breath. Support is available. Here’s what you need to know.

Animals are such agreeable friends ― they ask no questions, they pass no criticisms. – George Eliot, English novelist & poet

Whether they have fur, feathers, scales, or fins, pets are a source of joy, friendship, and unconditional love for people across the world. And pets can improve our wellness too. Studies show that pet companionship has many mental and physical health benefits, from reducing anxiety to lowering blood pressure.1

So, if you are coping with cancer, it’s natural to think of your pet as an important part of your support system and even your care team. Chances are your pet has helped you through challenging times before. But if you are newly diagnosed, you also may have many worries and questions. Will you have the time, energy, and resources to take care of your pet while getting cancer treatment?

You also may wonder:

  • Is it safe to keep my pet at home while going through treatment?
  • Can I have physical contact with my pet?
  • Are there pet care tasks I can do safely, or do I need help from others?
  • What are my options if I’m having trouble keeping up with pet care needs?
  • Are there programs that provide pet care assistance for cancer patients?
  • What questions should I ask my healthcare team about pet care?

Many pet owners who are coping with cancer share your worries. In 2018, CancerCare surveyed its clients about their pet care concerns.2 Most respondents with pets worried about paying for pet food and vet care costs, shopping for pet food, and getting to the vet. More than half of pet owners also cited challenges doing pet-related tasks because of an inability to walk, lift, or bend down. Another concern among respondents was risk of infection due to a weakened immune system during treatment.2

Here’s What You Can Do

For questions about pet care and pet ownership during your treatment, your best resource is your healthcare team. Let them know about any pets you have at home. They can give you vital guidance on staying safe around your pet. Certain treatments like stem cell transplant can also have more restrictions and may require taking extra precautions during recovery. After a stem cell transplant, it can take up to a year for a patient’s immune system to recover.3

Your healthcare team will also want to know what types of pets you have. Certain animals can pose a greater health risk for cancer patients.4,5 These include reptiles, amphibians, parrots and other certain birds, and rodents including hamsters. Even as pets, these animals can potentially pass along harmful bacteria. This can be very serious for people who are immunocompromised (have weakened immune systems) due to cancer treatment.4,5

 

Simple Ways to Stay Safe With Pets 

There are some basic tips that can help you stay safe around your pet while you are coping with cancer.

  • Wash your hands regularly
  • Don’t let your pet lick your face
  • Maintain your pet’s wellness exams, immunizations, parasite screenings & prevention care
  • Find someone who can help you with pet care tasks

Pet care tasks include things like cleaning up pet waste and brushing your pet’s teeth. Picking up pet toys and feeding your pet are also best left for someone else to do. Pet food, water dishes, and toys can harbor bacteria. If you must do any pet care tasks, consider wearing gloves and wash your hands thoroughly afterward.

You can also take steps to minimize your pet’s risk of getting infections from other animals. Ask your vet office for recommendations to do this. If you have a pet that likes to be outdoors, make sure they don’t wander away from your property.3  

 

Did You Know?

Nearly all U.S. pet owners (97%) surveyed by the Pew Research Center in April 2023 said their pets are part of their family. Read more about the survey results.

 

Pet Care Resources for Cancer Patients

When it comes to caring for your beloved pet, safety is probably not your only concern. You might be worried about managing both pet care and self-care as you undergo treatment.

A cancer diagnosis can consume your time, energy, and resources. Don’t be afraid to ask for help with pet care so that you can navigate medical appointments, take needed time for rest, and cope with potential side effects. Ask trusted friends or family members if they can help you with pet care tasks. Create a personal network site on MyLifeLine, our free online support community for people impacted by cancer. There, you can easily join your friends and family together and organize volunteers to help you.

If you don’t have a personal network near you, or need more assistance, there are programs aimed at helping people with practical and financial pet care needs. Here are some resources you may want to explore:

CancerCare Pet Assistance & Wellness (PAW) Program – The PAW Program provides free educational fact sheets, guides, and videos for people with cancer who are caring for pets. The program also provides limited financial assistance to qualified individuals who are in active cancer treatment and share their home with a cat or a dog.

Companions 4 Life Fund – This program, from the Florida-based nonprofit Cancer Alliance of Help & Hope, can help cancer patients with pet food, supplies, and vet expenses.

Pet Help Finder – Try this online resource to search for programs and services that can help with vet care, pet supplies, pet food assistance, boarding services, transportation support, and more.

Your veterinarian and local animal shelters can also be great sources of information. Check with them to see if they know of programs in your area that can help you manage pet care.

Looking for More Support?

For personalized assistance, contact our Cancer Support Helpline to speak with one of our experienced community navigators or resource specialists. They are here to provide free navigation for cancer patients and their loved ones by phone at 888-793-9355 and online via our live chat service.

Whether you have pet care needs or other concerns related to your cancer diagnosis, our Helpline team can connect you with resources and information. Here are a few programs our navigators have found for callers in need of pet care support:

  • Free dog-walking service for cancer patients
  • Free pet boarding for people undergoing cancer treatment
  • Meal delivery programs with pet food programs
  • Pet pantries for pet food and supplies like litter
  • Pet assistance programs for older adults

A cancer diagnosis can be stressful. Your pet can be a tremendous source of comfort during this difficult time. With the right resources and support, you can both get the care you need to stay as safe and healthy as possible.

Pets are humanizing. They remind us we have an obligation and responsibility to preserve and nurture and care for all life. – James Cromwell, American actor & activist

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7 Recipes to Ease Common Cancer Side Effects

Cheesy Chicken Millet Bake

 

This creamy, flavorful millet bake is perfect for patients who need to add calories to their diet. Find more information in our list below. Visit our Virtual Kitchen for more recipes, all created to support the nutritional needs of people impacted by cancer.

Are you experiencing nausea, fatigue, diarrhea, constipation, taste changes, dry mouth, or weight loss? We share healthy recipes that can help you cope.

Different treatments and different kinds of cancer are going to affect your ability to eat in many different ways. It is important to try to stay nourished as much as possible.

CSC podcast, “Encore: Eating Well and Staying Active”

Cancer treatment can change the way your body processes food. It can also affect how you feel, and even the way food tastes. In addition to taste changes, side effects like fatigue, nausea, diarrhea, constipation, and loss of appetite are common during treatment. – Alice Bender, Registered Dietitian, American Institute for Cancer Research

Eating healthy can help you curb these side effects and cope with related eating challenges. A nutritious diet has other benefits too. These include:

Eating healthy can help you curb these side effects and cope with related eating challenges. A nutritious diet has other benefits too. These include:

  • Maintaining a healthy weight
  • Lowering the risk of infection
  • Improving overall sense of well-being

Here are 7 common side effects during cancer treatment and healthy recipes that can help.

1. Nausea

If you are feeling sick to your stomach, you probably don’t have much of an appetite. Did you know that an empty stomach can make nausea worse? So, eating a small amount of food every few hours can help minimize it.

For a soothing antidote to nausea, try our Ginger Turkey and Wild Rice Soup recipe. One of the key ingredients is ginger root, which has been shown to help soothe nausea. Broth-based soups like this one can also provide essential fluids and electrolytes.

Find Tips to Cope With Nausea and Vomiting

2. Fatigue

Feeling tired, weary, exhausted, or worn out? Fatigue is a common problem for people coping with cancer. It may be a side effect of your treatment or the cancer itself.

Making sure your body is hydrated and nourished can help you feel more energized. Start your day off with our Almond Banana Wheatberry Cereal to refuel your body with nutrients. Wheatberries are an ancient grain, high in fiber and protein, and have a nutty, chewy texture.

Need extra time to rest throughout the week? Make a full pot of Almond Banana Wheatberry Cereal for the week ahead and keep in your refrigerator. Then you can enjoy a nourishing bowl whenever you need to quickly replenish your body – morning, day, or night.

3. Diarrhea

Diarrhea can result from some chemotherapy drugs, certain surgical procedures, and radiation treatment to the pelvic area. The apples and oats in our Apple Cinnamon Muffin recipe provide soluble fiber, which can help minimize diarrhea. The best part? These muffins are made with pure maple syrup, giving them a touch of natural sweetness. You can also substitute peaches or berries for the apples in this recipe.

If you are experiencing more than 3 episodes of diarrhea in one day, contact your healthcare team. Diarrhea can lead to dehydration or changes in the levels of potassium and sodium in your body. Changes in these levels can be dangerous if not corrected.

4. Constipation

Lentils are a good source of iron, zinc, and B vitamins, among other important minerals. The legume can also help with constipation. Our Colorful Lentil Soup is bursting with color and flavor.

Another common side effect of treatment is constipation. This could happen for different reasons. Eating a low-fiber diet, not drinking enough fluid, and not being active are common culprits. Surgery, pain medications, and some chemotherapy drugs can also cause changes in normal bowel function.

Finding ways to incorporate gentle physical activity into your day can help. In addition, fiber-rich meals like our Colorful Lentil Soup can promote regular bowel movements. Easy to make in one pot, this recipe combines veggies like celery, carrots, tomatoes, and zucchini into a hearty, nourishing soup.

Discover Tips to Cope With Diarrhea and Constipation

5. Change in taste

Watch this 2-minute video to see how our mouthwatering Polenta With Fruit Compote is made. Using just a few simple ingredients, it’s a quick and easy recipe to help with changes in taste.

Have you noticed that foods don’t taste the same to you now? Some foods may taste like metal or chalk. Or you may find that foods have no taste at all. It’s common for cancer treatment to affect both taste and smell. In turn, this can impact your desire to eat. The good news is that changes in taste are usually temporary and go away after treatment ends.

In the meantime, our Polenta With Fruit Compote may help with the taste changes you’re experiencing. The recipe brings together maple syrup and tart berries for a fruity, flavorful treat. It’s an ideal meal or snack to cope with taste changes, aversions to sour taste, or difficulty swallowing. This compote is also packed with antioxidants and fiber.

6. Dry Mouth

Dry mouth is a common side effect of cancer treatment, namely chemotherapy and radiation therapy. These treatments can reduce the saliva in your mouth. If you are experiencing a dry mouth, you may notice that it’s harder to chew and swallow your food.

Find relief from dry mouth with our cool and soothing Cranberry Coconut Popsicle. This refreshing, 3-ingredient recipe is ideal for anyone experiencing dry mouth, difficulty swallowing, or mouth sores from radiation treatment. Unlike most popsicles, this frozen treat is nutritious too. It has fiber, healthy fat, and protein.

Need Nutrition Help?

Savor Health is a digital health company that provides precision nutrition interventions to manage cancer and other complex conditions. Their Intelligent Nutrition Assistant, Ina®, provides free, 24/7, unlimited, HIPAA-compliant, and secure nutrition services, all from your phone.

7. Weight Loss

Have you noticed that it is hard to gain or keep on weight? It may be a side effect of your cancer treatment or a loss of appetite, if you haven’t felt like eating.

Significant weight loss and muscle loss are associated with a condition called cancer cachexia. If you are experiencing significant weight loss, speak with your healthcare team.

If you are coping with minor weight loss, eating healthy, high-calorie foods may help you gain some weight. Our Cheesy Chicken Millet Bake is high in calories, protein, and fiber. The leeks and cheese give this recipe a rich flavor and creamy texture. If you love traditional chicken and rice casseroles, this recipe is one to try.

Get Tips to Cope With Weight Loss and Weight Gain

Always let your healthcare team know when you are experiencing any eating problems or side effects. They can help determine the most effective way to address them. Speaking with a registered dietitian can also be helpful. A dietitian can share recommendations to help you meet your nutritional requirements and keep your immune system strong. These strategies, combined with healthy eating, can boost your wellness during treatment and beyond.

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How Support Groups Can Help After a Cancer Diagnosis

Support groups can help foster hope and resilience in the face of adversity. Is a support group right for you?

‘‘Stepping into a [support] group for the first time is both brave and humble. It’s normal to feel anxiety about what to expect, but people are often surprised at how comfortable they feel even if they never saw themselves as a ‘support group’ kind of person. Hearing the stories of others who get it from the inside out can be a validating and reassuring experience.’’ – Renata Sledge, MSW, LCSW

If you have just learned you have cancer, you may feel overwhelmed as you decide which steps to take next. You also may feel too numb to think about how to manage the stress and anxiety that can come with diagnosis and treatment. Even when you are surrounded by loving and supportive people, dealing with the emotions and changes that cancer can bring can be lonely.

Talking to someone may be the first step in helping you cope with the uncertainties ahead. Support groups are one way to talk about what you are experiencing and make meaningful connections with others who understand.

 

What Are the Benefits of Support Groups?

By coming together and sharing personal experiences, support group participants can help one another feel less alone. They can also share coping strategies that have helped them.

There has been extensive research on the positive effects of support groups as a method of coping with cancer, improving quality of life, and improving health outcomes. Studies show that support groups help reduce the 3 most significant stressors associated with cancer: unwanted aloneness, loss of control, and loss of hope.

In our own research, people who participate in support groups ― either face-to-face or online ― have reported significant decreases in depression, increased zest for life, and a new attitude toward their illness.

 

“The thing that was important was that you found out you are not alone… It gave you the chance to laugh, to cry, and to realize that you weren’t alone in the caregiving.” – Elaine, caregiver support group participant

 

Types of Cancer Support Groups

Patients, caregivers, and family members can all benefit from joining support groups. There are many different types of support groups that provide emotional support for cancer. These include:

  • Professionally facilitated groups
  • Groups facilitated by fellow cancer survivors
  • Disease-specific groups (such as breast cancer or colorectal cancer support groups)
  • Age-specific groups (such as support groups for teens or young adults)
  • Time-limited groups (could be short-term, long-term, or ongoing)
  • Groups for caregivers or family members

Look for a group that fits your unique needs. Most support groups are free-of-charge and meet on an ongoing basis in your community. If you join a support group and do not find it helpful, try another one. A support group can be a lifeline to information, support, and encouragement through good times and bad.

 

“As a support group facilitator, I have found that when a group focuses on the social and emotional impact of cancer, the actual diagnosis or stage does not matter. Often, people learn from each other better in general support groups because there are so many commonalities in the cancer experience.” – Clara Anderson Sainte, LCSW, LSCSW

 

Where Can I Find a Support Group Near Me?

We know how important finding a supportive community can be. We have 190 locations worldwide, including CSC and Gilda’s Club centers, that offer support groups and other professionally led programs, all free of charge, for people impacted by cancer.

The support groups at our locations are facilitated by licensed mental health professionals. They are experts in group facilitation and supporting the formation of positive group dynamics. Participants can share what they are feeling and experiencing, from coping with life changes to managing side effects like pain and fatigue.

Find a Location Near You

Note: If you do not find a CSC or Gilda’s Club location in your area, contact our Cancer Support Helpline toll-free at 888-793-9355 or via live web chat to receive resources and information targeted to your specific needs, including support programs that may be available near you.

 

“It creates a space where the good and the bad can be shared within a supportive community. No matter the circumstance, a support group ensures that no one is trying to manage tough cancer experiences alone.” – Clara Anderson Sainte, LCSW, LSCSW

 

How to Get the Most Out of Support Groups

Participation is at the heart of support groups. When participants share their thoughts, experiences, and feelings, everyone in the group can benefit from the discussion.

In a CSC blog for first-time group participants, Renata Sledge, MSW, LCSW, shared: “Support groups work best when members are open about their concerns, even the concern that attending group does not appear to be helping ― but you have a right to be cautious while you get your bearings, and it’s important that you feel safe before you share information and feelings.”

If you are new to a support group, here are some other helpful tips:

  • Give yourself time to warm up to your group.
  • Participate at your own pace and comfort level.
  • Not sure if it’s helping? Try 3 sessions to see how it goes.

 

“I walked into group knowing I needed to feel not so alone, but not sure that group was what I wanted. The first person I saw asked me how I was. I knew she really wanted to know and so I told her.” – Group participant

What If a Support Group Is Not Right for Me?

Support groups are not for everyone. You may decide, after giving it a try, that it is not a good fit for you. There are other options to help you cope with cancer and feel less alone.

Here are a few possibilities:

Take a Class or Workshop

In addition to support groups, our CSC and Gilda’s Club locations offer free programs like educational workshops, cooking classes, yoga, and meditation. These can be a great option for people who feel more comfortable doing activities rather than talking. In these settings, participants can still benefit from a sense of community and shared experience.

Connect With Others Online

If you don’t live near one of our physical locations, consider joining our free digital support community for people impacted by cancer, MyLifeLine. When you join MyLifeLine, you can create a personal support network to document your journey and receive support from friends and family along the way. You can also join our discussion forums on a variety of cancer-related topics, from coping with side effects to nutrition & wellness.

Connect to Your Online Community

 

Individual Support

Ask your healthcare team if there is an oncology social worker at your health center available to talk with you. Oncology social workers can help cancer patients and their families cope with and navigate cancer. They can be a helpful guide throughout someone’s entire cancer experience.

Individual Counseling

Individual counseling offers patients one-to-one time with a mental health professional. Mental health professionals are experts in helping people express thoughts, fears, and emotions. If you feel you could benefit from individual counseling, ask your oncologist or local community support organization for a referral to a specialist in cancer counseling. They should be able to provide you with a list of qualified professionals in your area. Be sure to check with your insurance company to determine what counseling services and providers are covered under your plan.

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Coping With Bone Metastasis? Try These Healthy Tips

Bone is a common place for cancer to spread. If you or a loved one is living with cancer that has spread to the bone, read on for tips to improve your quality of life.

 

Bone metastasis happens when cancer spreads to the bone from another part of the body where it started. It is different than primary bone cancer, which starts in the bone. Bone metastasis (sometimes called bone mets or secondary bone cancer) is not bone cancer. It is still the same cancer you started with. This might be breast cancer, prostate cancer, or another cancer.

Find Hope With Treatment

Bone metastasis is one of the most common types of metastases. It is also very treatable. Many people can live for years after learning they have bone metastasis. Treatment depends on each patient. So, your healthcare team will consider factors that are unique to you. These include your symptoms, where your bone cancer is located, and other cancer treatments you are receiving or have received.

Discover Treatment Options for Bone Metastases

When you discuss treatment options with your healthcare team, let them know about any symptoms you are experiencing. This might include bone or joint pain. Treatment can help lessen pain. Other ways to manage bone pain include working with a palliative care specialist, taking pain medication, or using radiation to treat pain at specific sites. Your healthcare team can help you create a management plan.

Did You Know?
Some drugs can help slow bone metastases, strengthen bone, and reduce pain. Get more details about bone-building drugs.

Boost Your Bone Strength

Your bones and joints need extra attention and care when managing bone metastasis. Common areas for cancer to spread are the hip bone, ribs, skull, spine, upper leg bone, and upper arm bone. Cancer can weaken these bones by keeping important cells from working the way they should. Weakened bones are more prone to breaking.

Fortunately, there are steps you can take to reduce your risk of fractures, including keeping your bones as strong as possible. Here are some ways to get started:

Get moving to strengthen your bones. 

Exercising can help you maintain bone density, improve your balance, and boost your mood. Walking, swimming, tai chi, or yoga are gentle ways to get moving and lift your spirits. Resistance exercises can be good for building muscle strength, but there may be limits on how much weight you should lift. Since some exercises can put stress on the body, ask your healthcare team about safe forms of exercise based on your unique needs.

Nourish your bones. 

A well-balanced diet can help you feel better overall and support bone health. Look for foods that are rich in vitamin D and calcium. Vitamin D helps the body absorb calcium, and calcium helps build strong bones. Excellent sources of calcium include yogurt, canned salmon, and dark, leafy greens like kale and broccoli. Always talk with your healthcare provider before making any dietary changes. They can also tell you:

  • If calcium and vitamin D supplements may be right for you
  • Whether you should follow any dietary restrictions
  • How you can support your bone health in other ways

Canned salmon is high in calcium, but fresh salmon is a good source, too. Try this Herbed Lemon Salmon recipe, perfect when experiencing dry mouth from radiation treatment.

Safeguard your home. 

Since the risk of fractures increases with bone cancer metastasis, look for ways you can reduce your chances of falling. Check your home for potential tripping or slipping hazards and correct them. Are there any loose area rugs? Stairs without carpet or treads? Try these 8 simple tips to prevent falls.

Did You Know?
Smoking speeds up bone loss, and excessive alcohol consumption can affect the cells that build new bone. Avoid smoking and limit alcohol to help keep your bones as strong as possible.

Connect With Others

No one should have to manage a cancer diagnosis alone. Find hope and inspiration on MyLifeLine, our free digital support community for people impacted by cancer. MyLifeLine exists to easily connect patients and caregivers with their family members, friends, and others in their support community.

Create a personal network site to share updates with your loved ones and organize a helping network for things like rides to medical appointments, help with meals, childcare, and more. You can also join our discussion forums on a variety of topics, from nutrition & wellness to managing side effects. The forums are a safe space to exchange stories, coping strategies, and inspiration with other members going through similar experiences.

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Build a Helping Network Among Your Friends and Family

family signing onto laptop to help a loved one

Research shows outcomes for cancer patients improve when they have a strong support community. Building a helping network can help you focus on what’s most important — healing.

A cancer diagnosis can be overwhelming. Sometimes, the toughest part is knowing where to start as you begin navigating this challenging journey. If you aren’t sure where to start, one helpful resource is MyLifeLine, CSC’s free digital support community for people impacted by cancer. 

MyLifeLine exists to easily connect patients and caregivers with their family members, friends, and others in their support community. MyLifeLine allows you to create your own personal network site. Here, you can document your journey, share updates, and receive social, emotional, and practical support along the way.

When you create a personal network site, you also gain access to a tool called the Helping Calendar. The Helping Calendar enables patients and care coordinators to create events for all sorts of things: doctor’s appointments, rides to treatment, meals, childcare, pet care and more. This is an exclusive space for cancer patients and their care coordinators to organize volunteers to help with specific events, easing the burden of cancer so that patients can focus on treatments and healing.

Did You Know?

Having a strong support system is good for our social well-being. It can boost our emotional, mental, and physical wellness, too.

As difficult as it may be to ask for help, there are members of your community who want to be useful to you. The Helping Calendar notifies your supporters when events are added to your calendar. This way, your support network knows exactly how they can help, and you never have to pick up the phone. To volunteer for a specific event, they can simply visit your calendar to sign up. For extra help, you can even designate a friend or family member to manage your Helping Calendar for you.

The Helping Calendar also allows your friends and family members across the country to know when your (or your loved one’s) treatment appointments are. One MyLifeLine family said they love the Helping Calendar because “it’s a great way to disseminate information to a lot of people who are interested.”

Exclusively for MyLifeLine Members

Family and friends may not always have the answers you seek. MyLifeLine’s discussion forums are a safe space to exchange stories, coping strategies, and inspiration with other members going through similar experiences.

Discover More About Our Discussion Forums

CSC and MyLifeLine firmly believe that community is stronger than cancer. At some point during your cancer journey, you’re going to need help. Luckily, your community has your back. Give them the opportunity to contribute.

Whether you’re a cancer patient or a caregiver, you’re not in this alone. Your cancer experience is unique, so your support should be too.

Support is so vital and one component, out of many, that helps me cope.
Nancy
MyLifeLine Member

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Why Immunotherapy Might Be Your Cancer-fighting Superhero

Imagine giving your immune system a superhero suit that’s tailored to fight your cancer. Immunotherapy teams up with your immune system to do just that.

“I think it’s the cat’s meow – it’s the best there is. Immunotherapy came along at just the right time.” – Karl, diagnosed with bladder cancer

“You have cancer” are words that no one wants to hear, but unfortunately, it’s a reality that many people face in their lifetime. The good news is there are more treatment options available to us now than ever before. Treatment for cancer can vary from surgery to chemotherapy and more. But have you heard of immunotherapy?

Immunotherapy is a type of cancer treatment that uses the body’s own defense system to fight cancer cells. The immune system is an incredible network of cells and tissues that are constantly on guard, protecting us from all sorts of diseases and infections. But sometimes, cancer cells can slip through the cracks and multiply, causing tumors and damaging our bodies.

That’s where immunotherapy comes in. It’s like giving your immune system a superhero suit to fight cancer cells. It may sound like science fiction, but immunotherapy is a real cancer treatment that’s gaining popularity and proving highly effective in treating some cancers. These include:


Watch this 2-minute video to understand immunotherapy basics: what it is, how it works, and if it might be an option for you.

There are many types of immunotherapies, but the most common are checkpoint inhibitors.

Checkpoint inhibitors are drugs that assist T cells in fighting cancer. T cells are special white blood cells that recognize and attack cells that are harming your body, like cancer. Think of your T cells like little detectives, scanning the body for abnormal cells and eliminating them before they become a threat. Sometimes, cancer cells are sneaky and disguise themselves, making it harder for T cells to detect them.

Checkpoint inhibitors basically remove the disguise. This allows T cells to see cancer cells. Then, the T cells attack them and prevent them from spreading.

Learn About 5 Major Types of Immunotherapy

 

For most patients, immunotherapy is generally well tolerated, with fewer side effects than chemotherapy or radiation therapy. Of course, every person’s experience is different, but in general, immunotherapy is less harsh on the body and can lead to better outcomes.

This 2-minute video explains common side effects of immunotherapy, rare side effects, and side effects from combined treatments.

Immunotherapy can also be combined with other treatments like chemotherapy, surgery, or radiation therapy to create a synergistic effect. This means that multiple treatments working together can be more effective than any one treatment alone. It’s like two superheroes teaming up to defeat a villain.

One of the exciting things about immunotherapy is that it’s still a relatively new treatment. Researchers are continually discovering new ways to use it. For example, some studies have shown that immunotherapy can be used to treat certain types of cancer that were previously considered untreatable.

Worried About Treatment Costs?

New cancer treatments like immunotherapy can be expensive. Talk to your healthcare team about the cost of treatment options you are considering. Also ask if clinical trials are an option. If you have questions or concerns, call our Helpline at 888-793-9355. We offer free, personalized navigation for anyone impacted by cancer.

Of course, like any other cancer treatment, immunotherapy is not magic. It doesn’t work for everyone. It’s not a cure for all types of cancer. But it offers a promising new approach to cancer treatment — one that harnesses the power of the immune system in a way that was previously considered impossible.

So, what can you do if you or someone you know is facing cancer? As a first step, talk to your healthcare team. They can help you determine if immunotherapy is right for you. You can also do your own research but be sure to use reputable sources and consult with medical professionals about the information you gather.

It can be challenging to navigate cancer, but with the right treatment and support, many people live active, healthy lives after a diagnosis. So don’t give up hope, and don’t be afraid to explore new options like immunotherapy.

In this 4-minute video, Karl talks about his experience with immunotherapy and bladder cancer.
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Peer Support for Black Cancer Patients Opens Doors to Clinical Trials Diversity

two seated black men talking

Stock photo posed by models: Getty Images

Black and African American cancer patients represent only 5% of clinical trial participants. Our peer support program is working to change that by increasing clinical trial awareness & knowledge among Black and African American cancer patients like Cae.

 

“I was able to get the voice back that I feel like I lost throughout my whole deal with cancer.”

— Cae, Peer Clinical Trials Support Program participant

 

Existing barriers make it difficult for many underrepresented communities to participate in cancer clinical trials. Improving clinical trials diversity is extremely important. Everyone should have the chance to benefit equally from new, possibly life-saving treatments.

We know that knowledge, awareness, and trusted peer support can increase clinical trial participation. Our Peer Clinical Trials Support Program helps Black and African American cancer patients learn more about clinical trials through one-on-one support from an experienced Peer Specialist ― a Black or African American cancer patient or survivor who has participated in a cancer clinical trial.

In the following Q&A, we talk with Cae, a cancer patient who participated in our Peer Clinical Trials Support Program. Cae shares a few things she learned from her Peer Specialist and why she ultimately decided to join a cancer clinical trial:

 

1. Could you briefly describe your cancer diagnosis?  

I was originally diagnosed with CLL [chronic lymphocytic leukemia] in March of 2021. I got diagnosed with breast cancer in October of 2021. So, the leukemia metastasized and affected my left breast. I haven’t had any surgery yet, but I am actively still doing chemotherapy.

My diagnosis was a surprise with the breast cancer because I didn’t have any symptoms or anything. The only thing I had were lumps, and I thought the lumps were caused by the chemotherapy I was doing because of the leukemia.

When I finally brought it to my doctor’s attention, he had me get tests done. I can’t tell you how many tests I had done. And then finally he said yes, it’s breast cancer. It was just kind of shocking because, at the time, I was only 25, so it was very surprising for me.

 

2. After your diagnosis, did anyone talk with you about cancer clinical trials as an option? Or did you experience other barriers to learning about clinical trial opportunities? 

My biggest barrier honestly — and this is the reason why my doctor never brought trials or anything to me — is because a lot of the trials were local in my area, [and] insurance doesn’t cover the trials.* So, there are trials that either the facility has to pay for you to do, or you have to pay the facility in order to participate. And I have horrible insurance. That was a barrier that I already had — just getting my basic needs taken care of.

So, my doctor never brought up the idea of trials because he didn’t want me to have the idea of financial hardship with having to deal with that, if there was a possibility that facility didn’t offer [to pay to get a treatment done] because it’s experimental.

*Editor’s Note: Insurance coverage for clinical trial participation varies based on an individual’s insurance company and policy. Clinical trials usually cover the cost of participation. Some individuals need to travel to the facility where the trial is held if it is not available where they live. Coverage for travel costs may vary by trial.  

 

3. How did you find out about our Peer Clinical Trials Support Program?  

I was just looking online for different support programs that could offer me any type of help or resources or information to help me. Because I got diagnosed late in my CLL, and also kind of late stages into my breast cancer, I already know there are only limited options available for me.

I was just really interested in finding out, “Okay, what else is there past just what my doctor can do, more than just what I know.”

And I just stumbled across [the Peer Clinical Trials Support Program] and sent an email and said, “Hey, I want more information if you guys can give me anything to help me.” And they called me, and honestly, it was one of the most relieving calls I got during this whole process and dealing with cancer.

 

4. In this program, Peer Specialists use their own experience as a Black or African American cancer patient and cancer clinical trial participant to support others who are interested in learning about cancer clinical trials. What were some questions you had about clinical trials? And what were some helpful things you learned from your Peer Specialist? 

I didn’t originally have specific questions. But they were able to open the door for dialogue with me to where I could say, “Okay, well, I do have a question.”

And most of my questions were, “What are trials? What are things I should look for in trials that are good and trials that are bad? How do I know if this trial is a legit trial, and they’re not just trying to take my information or my blood samples?”

My Peer Specialist was able to explain to me what to look for and how I could look on a website where they have all the trials* and they’ll tell you which ones are open and who’s doing what, who’s the lead investigator.

I found that helpful because I could actually fact check and look into it: What are they doing? Who are they? [That] was helpful for me because one of my biggest worries with getting into a trial was being taken advantage of, or not knowing if I’m actually being a part of something that may help, or are these people just trying to use me as a guinea pig and they aren’t doing anything helpful.

*Editor’s Note: The National Cancer Institute and ClinicalTrials.gov are 2 well-known resources that provide information and details about clinical trials for all types of cancer. Most clinical trials are listed on both sites.

 

“I didn’t originally have specific questions. But they were able to open the door for dialogue with me to where I could say, ‘Okay, well, I do have a question.’”

— Cae, Peer Clinical Trials Support Program participant

 

5. After taking part in this program, you went on to join a cancer clinical trial. How did this program help support your decision-making process? 

It made me more confident in my choice, that I was making a good choice. It made me feel like I have a right to voice my opinion. I’m still actively in trial now, [and] it gave me my voice where, if something’s going on, I actually talk to the people that are working with me and [say], “Hey, I’m having this symptom” or “I’m having this going on,” without feeling like I can’t say anything or I just have to accept how it is and  deal with it.

With this support system, my Peer Specialist [said] if something is bothering you, let people know. I was able to get the voice back that I feel like I lost throughout my whole deal with cancer.

A big part of me lost my voice because I felt defeated, because so often doctors and people weren’t listening to me or didn’t take what I had to say seriously. And so, I felt like, okay, if they don’t, nobody’s not. So, with that, it built my confidence back a lot just to be able to interact and talk with the trial experts.

 

“It made me more confident in my choice, that I was making a good choice. It made me feel like I have a right to voice my opinion.”

— Cae, Peer Clinical Trials Support Program participant

 

6. Are there any words of support you would like to share with other Black or African American cancer patients who may be considering participating in a cancer clinical trial?   

Don’t let your previous interactions with specialists or doctors discourage you from having a better experience. Every doctor and specialist is not the same, and you will find someone who will listen to you, because you are worthy of having someone hear your voice.

Discover More About Our Peer Clinical Trials Support Program

Watch this short documentary “How Does a Clinical Trial Benefit ME?” — the first video in our new docuseries “Justified Medical Mistrust: Acknowledging the Past to Change the Future,” addressing myths, truths, & concerns that Black and African American patients and their caregivers often experience when considering cancer clinical trials.