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.

The #1 Thing You Can Do to Prevent Skin Cancer

A blue beach umbrella casts shade over a blue folding chair on a sunny beach

Photo by Loren Biser for Unsplash

Here’s why skin protection matters. Plus: Skin cancer signs to look for, and what we can learn from a former U.S. president about the importance of early detection.

 

May is the first of many signs that summer is coming. Warmer weather, light breezes, and summer breaks are quickly approaching. May also marks Skin Cancer Awareness Month — and for good reason. According to an article in Consumer Reports, ultraviolet (UV) rays can be “summer strength” by the late spring in many parts of the United States.

Skin cancer can happen when skin cells are damaged by UV radiation from the sun’s rays. This causes skin cells to grow uncontrollably and form tumors.

Did You Know?

“On the electromagnetic spectrum, UV light has shorter wavelengths than visible light, so your eyes can’t see UV, but your skin can feel it.”

— “UV Radiation & Your Skin,” Skin Cancer Foundation

 

Skin cancer is the most common type of cancer in the United States, affecting more than 3.5 million people each year. Fortunately, most cases of skin cancer are easily treatable if found early. However, undetected and untreated skin cancer can lead to more serious complications, as former President Jimmy Carter experienced.

In 2015, Carter underwent surgery to remove a small lesion from his liver. The lesion was actually metastatic melanoma, an aggressive type of skin cancer that had spread (metastasized) to his liver and brain.

This news was a shock to many, as Carter had always been known for his active lifestyle and good health. In 1982, he and his wife Rosalynn established The Carter Center to fight global disease, not knowing he would one day battle a disease of his own.

Carter’s battle with cancer became public shortly after his diagnosis. He quickly became an advocate for early detection and treatment. Carter encouraged everyone to get regular checkups, wear sunscreen, and take care of their skin. Soon his story made headlines globally.

Skin cancer is divided into 2 main types: melanoma and non-melanoma.

Melanoma is the deadliest form of skin cancer, accounting for a majority of skin cancer-related deaths. It can develop anywhere on the body but is most common on the face, chest, and back. Non-melanoma skin cancer (NMSC) is split into:

NMSC is generally less dangerous but can still spread to other parts of the body if left untreated.

What treatments are available for advanced non-melanoma skin cancer? This 2-minute video explains.
Tips for Skin Cancer Prevention

One key thing you can do to help reduce your risk of developing skin cancer is to limit your exposure to sunlight. Protection from the sun’s UV radiation is important year-round.

 

Sun Safety Tip

“Check the UV index every day. The higher the UV index, the more you should do to protect yourself from the sun.”

— “UV Safety,” National Weather Service

 

When you are in the sunlight for extended periods of time, practice sun safety. Take simple steps like wearing protective clothing outdoors, staying in the shade during peak sun hours, and applying a high SPF (sun protection factor) sunscreen regularly. The Centers for Disease Control and Prevention recommends using an SPF of 15 or higher. And don’t forget sunglasses to protect your eyes.

The Skin Cancer Foundation offers a comprehensive list of sun protection tips. 

Eating healthy is another step you can take. Research suggests that antioxidant-rich foods, including colorful fruits and vegetables, may help boost people’s protection against skin cancer.

 

Sun Safety Fact

“UV rays can reach you on cloudy and cool days, and they reflect off of surfaces like water, cement, sand, and snow. In the continental United States, UV rays tend to be strongest from 10 a.m. to 4 p.m.”

— “Sun Safety,” Centers for Disease Control and Prevention

Tips for Early Detection of Skin Cancer

The warning signs of skin cancer vary depending on the type and stage of the disease. Common symptoms include changes in the size, shape, and color of moles or other existing growths. The appearance of new growths or sores that do not heal, and itching or bleeding in a particular area can also be concerning.

If you notice any of these symptoms, it is important to seek medical attention quickly for a skin examination, lab testing, and possible biopsy if necessary.

In this 2-minute video, Lynn Schuchter, M.D., offers tips to detect melanoma early. 

It is also important to be aware of risk factors for skin cancer. These include:

  • a fairer skin tone
  • a history of sunburns
  • a family history of skin cancer

While people with fairer skin tone are at higher risk, anyone can get skin cancer regardless of their complexion.

 

Did You Know? 

Signs of skin cancer can show up differently for people of color. This can make it harder to notice signs right away. Read more in our guide Skin Cancer Among People of Color, or Cáncer de Piel en Personas de Color.

 

If you have any risk factors for skin cancer, consider scheduling routine skin exams with a dermatologist. You can also do monthly head-to-toe self-checks at home. Check all the surfaces of your skin. Look closely at your moles to see if they are beginning to change in shape, size, or color.

Follow the ABCDEs of skin cancer as a guide:

  • Asymmetry: The shape of one half of the mole does not match the other.
  • Border: The edges are often tagged, blurred, or irregular in outline.
  • Color: The color is uneven. Shades of black, brown, and tan may be present. Areas of white, grey, red, pink, or blue also may be present.
  • Diameter: There is a change in size, usually an increase.
  • Evolving: Changes in size, shape, color, or elevation, or any symptoms such as bleeding, itching, or crusting.

The Skin Cancer Foundation provides detailed instructions on how to do a skin check.

 

Skin Cancer Resources & Support

Our research reveals that people with skin cancer may need additional support and information as they navigate the disease and treatment options.

For example, in our cancer experience registry survey, 49% of participants reported being not at all to somewhat knowledgeable about treatment decisions before making them. In addition, 73% reported being not at all to somewhat knowledgeable about financial impact before treatment.

If you are living with skin cancer, we offer a variety of resources to help ease the burden of your journey.

 

“My suggestion is find a [support] group if you haven’t, and if you have, participate. It is helpful.”

— Lisa, diagnosed with metastatic melanoma

 

Jimmy Carter’s battle with cancer served as a wakeup call to many people, reminding us of the importance of skin protection and skin health. His message of prevention and early detection continues to resonate with people of all ages, and his dedication to improving cancer research and awareness has inspired countless others to do the same.

For Carter, one key to becoming cancer free just 4 months after his diagnosis was immediate treatment using radiation therapy and immunotherapy. His story is a powerful reminder of how important it is to address our own skin health and take steps to protect ourselves.

6 Strategies to Ease Your Worries About Cancer Recurrence

A side view of a female doctor hugging an older man in a clinic

Stock photo posed by models

While no single strategy is guaranteed to make fears of recurrence go away completely, there are steps you can take to help ease your distress.

Many people with a history of cancer experience worries and uncertainty about the future. This can include fears of an old cancer potentially returning, or a new cancer emerging.

These feelings, while distressing, are common and normal after a cancer diagnosis. In our own research, over half of participants in our cancer experience survey reported substantial concern about disease progression or recurrence.

If you have fears about your cancer coming back, you might notice that specific factors set them off because they remind you of your diagnosis. These triggers might include follow-up appointments, anniversaries or birthdays, new diagnoses among people you know, or physical symptoms like a new ache or bump on your skin.

Fear of recurrence can affect every part of your life. Being aware of possible triggers and having coping tools ready can help you manage and minimize these fears.

If you are worried about a recurrence, try one or more of these strategies:

1. Find Professional Support

Let your healthcare team know if you are feeling worried or anxious. They can refer you to a psychosocial oncology professional with whom you can discuss your concerns. This might be a therapist or an oncology social worker.

Many people don’t realize that oncology social workers can provide support throughout a patient’s entire cancer experience, even after treatment ends.

In 2022, 74% of callers to our Cancer Support Helpline reported having worries about the future and what lies ahead, and 50% requested additional support for this concern.

Another option is to visit one of our caring and supportive Cancer Support Community or Gilda’s Club locations near you. We have 190 locations worldwide, with professionally led programs that include support groups and educational workshops for cancer patients, survivors, caregivers, and loved ones. Our programs are offered at no cost to anyone impacted by cancer.

“There were times when I would worry myself sick, wondering if I would have a breast cancer recurrence, and that is definitely not living your best life. Dance, laugh, take that fabulous vacation to the beach (I did), volunteer your time. Just continue to live your life!”

— Delisa

2. Develop a Care Plan

Being an active partner in your survivorship care with your healthcare team can help you maintain a sense of control. While there are some things you can’t control, think about the things you can do, such as:

  • Asking your healthcare team about signs of recurrence for your cancer type and ways that you can stay healthy
  • Staying on top of recommended medical tests, procedures, and other follow-up appointments
  • Keeping track of new concerns and questions as they arise, and sharing them with your doctor

If you are about to finish active cancer treatment, or have just completed it, also talk to your doctor about getting a survivorship care plan. This plan outlines what a patient should do in their follow-up care and also includes important information about their diagnosis, treatments, and side effects they might experience.

Discover More About Survivorship Care Planning

Being an active participant in your healthcare and having a clear follow-up plan may help ease some of your worries about the future, including fears of recurrence. Read Alyssa’s story: a 2-time pediatric cancer survivor shares how survivorship care and self-advocacy have helped her cope with worries about a relapse.

3. Follow a Healthy Lifestyle

Creating a healthy lifestyle plan after cancer includes eating a nutritious diet and getting regular exercise.

Researchers continue to learn about the potential mental health benefits of doing both. Some studies suggest that exercise may help reduce anxiety for some people. A healthy diet that includes fruits, vegetables, omega-3 fatty acids, nuts, and seeds also may be associated with lower levels of anxiety.

Talk with your healthcare team about ways you can stay as healthy as possible through nutrition and exercise.

Get Tips to Ace Your Workout After Cancer

“Two of my goals are: one, to be able to walk further distances so I could go on a couple of vacations this summer and two, to do whatever I could to improve my neuropathy in my feet and my knees… I learned what machines to use to build up my glutes, which would steady my knees. I can now walk 20 minutes on the treadmill and my balance has improved dramatically. I also learned some new yoga and meditation, all [of] which provide stretching and give me some new tools to improve my emotional health when things get tough on my cancer journey.”

— Sharletta

4. Practice Mind-Body Techniques

Research published in the journal Psychooncology suggests that mind-body practices like meditation may help reduce fears of cancer recurrence and other uncertainties in survivorship.

Mind-body practices can help you rein in distressing thoughts, focus on the present, and achieve a sense of calm. A breast cancer survivor describes how meditation and breathing techniques have helped her manage fears of recurrence.

Relax & Unwind With Our Guided Meditation Videos

5. Connect With Others Online

As you navigate different concerns related to cancer survivorship, including fears of recurrence, it can be helpful to hear from others who are going through similar experiences. Our free online cancer community is a safe space for you to share your concerns with people like you who are navigating cancer or life post-treatment.

We have discussion forums on a variety of cancer topics, including post-treatment survivorship, coping with side effects, and nutrition & wellness. It’s a convenient option if you don’t have a CSC location close to home, or if you’re looking for ways to supplement in-person support programs you may be attending.

Connect With Others Like You Now

 

“I am bold and able to transcend my problems because of my solid support group, with whom I am transparent and inclusive and engage in my small wins, so they are emphatic with positive thoughts during my bad days. I just let it out in my support group about my feelings, pain, good and bad days.”

― Brinda

6. Do Something You Enjoy

Channeling your focus into an activity, be it a practical task or an interesting hobby, can provide a welcome distraction that takes your mind off your worries. If you enjoy doing the activity, it may bring you a sense of happiness, too. In fact, there’s a word for this focused state of mind: flow.

The term was coined by psychologist Mihaly Csikszentmihalyi, a cofounder of the field of positive psychology. Csikszentmihalyi shares more about flow and happiness in this TED Talk.

Cancer Treatment: Where Do I Begin?

The first critical step to managing your cancer treatment is making the decision to empower yourself. At Cancer Support Community, “empower yourself” is a phrase we use to describe the ongoing process of making a personal effort to become educated about your cancer diagnosis, your cancer treatment, your health care team, and ways to improve your overall wellbeing. To become “empowered” means that you choose to adopt a series of actions, behaviors, and attitudes that can improve the quality of your life. It’s not about making monumental changes but rather small incremental steps such as asking questions or self-educating to gain a sense of confidence and control as you move forward with your cancer treatment.

Cancer is treated in a multidisciplinary way, meaning several different types of health care professionals will be managing your care. The selection of your oncologist and health care team is one of the most important decisions you need to make and manage throughout your treatment for cancer. An effective treatment for cancer requires a considerable effort by both you (the patient), and your physician. Forming a strong relationship with your cancer care team will be crucial to managing your cancer journey.

Your active participation in the choices you make with your health care team can make a big difference in your cancer experience and quality of life. One way you can do this is to prepare a list of questions for each appointment. Also, be sure to ask for clarification of any terms you do not understand. If you do not feel like you will be able to develop a good relationship with your doctor, consider finding another one. And remember: It is always ok to get a second opinion on your diagnosis and treatment plan from another doctor.

Develop a Treatment Plan

To ensure you understand all aspects of your care, you may want to ask your doctor or your oncology nurse to develop a written cancer treatment plan. This can be a useful communication tool for you and your doctor as it helps you have a full big picture view of what’s to come. It will also help keep you organized, ask questions, and prepare for what’s next.

Your treatment plan reflects your unique situation, taking into account not only the type of cancer you have but your overall medical condition and your personal considerations.

Your Cancer Treatment Plan Should Include:

  • Your cancer diagnosis, tumor characteristics, tests you have had to diagnose your cancer, tests will need to have performed (and how often), treatments you have had or will receive, and how to access support services.
  • Dates and location of scheduled treatments.
  • Side effects of treatments.
  • Recommendations and precautions for managing side effects.
  • Information on scheduling follow-up visits, tests, etc.
  • Complete contact information for all of the members of your health care team.Make sure you understand what is in your treatment plans. There can be a lot of information to digest. If you don’t understand something, ask. Relaying the information back to the doctor can also be helpful to know that everyone is on the same page. The American Society of Clinical Oncology has developed sample treatment plans and templates that can help you and your doctor develop your written treatment plan.

Managing Medications

  • Cancer treatment usually involves chemotherapy or targeted therapy to treat the cancer as well as other medications for managing side effects.
  • It is important to keep track of the medication you are taking. These tips can help:
  • Get organized. Use pill organizers, charts, calendars, or another method that works for you to keep track of your medication. This will help you ensure you are taking the right medication at the right time.
  • Maintain a master list of your medications. One easy way to do this is to ask your health care team to print out a list of your medications for you. Your medications are likely to change over the course of your cancer treatment, so be sure to review this list at each appointment. If you have a spouse or caregiver who helps you organize your medications, it will be important to review the list with them as well.
  • Do not skip a dose. If you do, contact your health care team for directions.
  • Make every attempt to not run out of your medicine. Call your pharmacy when you notice that you are running low and need a refill. If you use mail order delivery, remember to give staff ample time to refill your medication and speak with your insurance company.
  • Tell your doctors and nurses about any side effects that you experience, even if you don’t think they are that important. They will have information and advise on how to help manage them.
  • Talk to your care team before taking any medication, vaccination, herb or supplement suggested by a health care provider who is not part of your cancer care team. It’s possible that something another provider suggests you take may interact with your cancer treatments and make them less effective or cause more side effects.

Maintaining a Healthy Lifestyle

Undergoing cancer treatment is challenging but taking steps to ensure you are maintaining a healthy lifestyle can make a world of difference in how you get through your cancer journey. Developing or continuing healthy habits will not only help you lessen the rigors of cancer treatment, but benefit you even after treatment is finished.

Try to choose to adopt a series of actions, behaviors, and attitudes that aim for a healthy lifestyle. Each individual is unique; each person’s cancer is different. You are the expert in your cancer experience in relation to how you feel, what is important to you, and what you want. Work with your health team to tailor steps to healthy living that will work for you.

Healthy Living During Cancer Treatment

During treatment, it’s important to try to maintain as a healthy a lifestyle as you can. What does this mean?

  • Don’t smoke. If you smoke, talk to your doctor about quitting.
  • Get proper nutrition. This is essential as your body undergoes the rigors of treatment and exerts a lot of energy into healing and recovery. Taking steps to have a healthy diet will help you to have fuel and power to keep up your strength.
  • Exercise. Doctors encourage cancer patients to stay as active as possible. Be sure to talk to your doctor to learn how to best tailor your exercise regimen for you.
  • Pay attention to your emotional health. Getting a cancer diagnosis can be hard to handle. You may experience a rollercoaster of emotions throughout your treatment including fear, worry, sadness, anxiety, anger, and many more. However, there are many ways that can help you cope healthily with your emotions and cancer experience.

Doctor Priorities vs Patient Priorities: How to Strike a Balance

A smiling woman doctor in a white lab coat speaks with a patient

 

One of the first decisions everyone diagnosed with cancer must make is choosing a treatment that’s best for them. For many patients, the decision is not an easy one, whether their options are many or few. Some patients also might find that their doctor’s priorities are different from their own. A doctor’s No. 1 priority is treating a patient’s illness or disease. But for some patients, their No. 1 priority may not be their disease.

“It’s not surprising that doctors and patients have contrasting agendas,” Danielle Ofri, M.D., wrote in a blog for the New York Times. “We come to illness from entirely different perspectives and backgrounds. Moreover, the angles of our respective lenses are mismatched.”

Coming to an agreement with your healthcare team about what’s best for you can be a unique challenge, but it’s attainable. For Dr. Ofri and one of her own patients, the challenge was “to help each other adjust the angles of our respective lenses so that our visions could come into common focus.”

So, what happens when your priorities and your doctor’s priorities don’t perfectly align? Keep reading for tips on striking a balance that works for you.

 

Communicate Your Needs & Goals

Cancer and its treatment can be disruptive to everyday life. We recognize the delicate balance between maintaining your lifestyle and treating your disease. It’s important to discuss your treatment options, questions, and concerns with your healthcare team. Let them know what is important to you so the disease can be treated effectively without compromising what matters to you. Through open and honest communication with your doctor, you can make a decision you feel comfortable with.

Here are a few examples of topics to discuss with your doctor:

  • What treatments are best for me and why?
  • What are the risks and benefits of each treatment option?
  • What side effects should I expect?
  • What can I do to feel better?

In addition to learning what your doctor feels is the best goal of your treatment, you can share your own goals around treatment. A goal of treatment may be cure, slowing or controlling tumor growth, or extending your life while maintaining quality of life.

You can also inform your doctor about any personal goals or plans you have. For example, you may want to attend a loved one’s upcoming wedding or other special event for which you want to feel your best. By communicating your goals and plans, you and your doctor can work together to decide the best treatment for you.

Discover Tips & Tools to Help You Make Treatment Decisions

Even though you don’t feel like researching your cancer, it is truly critical for treatment. The more you know, the better. Doctors don’t have time to explain everything, or nurses, so it is important to take notes or record the conversation. I record the office visit, go home, listen & write down what was said and then erase.

― Nancy, diagnosed with cancer

 

Ask About Clinical Trials

One treatment option many cancer patients have at their disposal is a clinical trial. Clinical trials for cancer are research studies that compare the most effective known treatment for a type or stage of cancer with a new approach, such as a new drug or combination of drugs. People with any type and stage of cancer should take the time to explore this possibility.

Even if your cancer is in remission, you can participate in trials that seek to improve your mental and physical health for the road ahead. Clinical trials are not ideal in every situation, but they are always worth looking into.

Find Out More About Cancer Clinical Trials

 

Reach Out for Support 

Making a decision about cancer treatment can be overwhelming. Sometimes it’s hard to know what questions to ask your healthcare team. If you aren’t sure where to start, we offer a decision-support counseling program called Open to Options®. This program can help you create an organized list of questions and topics to discuss with your doctor so you can explore your situation and choose the best treatment option for you. Open to Options is available in English or Spanish for people with any stage of cancer. Call our Cancer Support Helpline at 888-793-9355 to learn more about the program.

Cancer care is changing. Watch this short video about new models of care that can improve your life.

 

Don’t Forget Self-care

The hard decisions don’t end in the doctor’s office. Taking action in your cancer journey also includes taking care of yourself. There are steps you can take to improve your quality of life when living with cancer. Strive to make your health and well-being a priority. Choosing to face cancer head-on is a decision that empowers you to continue living your life your way.

10 Things You Should Do if You are Diagnosed with Cancer

A female doctor in a white coat shows a male patient information on a tablet screen

For many people, facing a cancer diagnosis is like nothing they have faced before. It can be a life-altering experience. One of our goals at Gilda’s Club and CSC is to help people with cancer and their loved ones become empowered. When people feel empowered in their cancer experience, they can regain a sense of control. This can help reduce anxiety while navigating a diagnosis.

Kim Thiboldeaux, author of Your Cancer Road Map: Navigating Life with Resilience, shared the following tips to help empower you on your journey.

Here are 10 things to do if you or a loved one has been diagnosed with cancer:

 

1. Ask your doctor how much time you have to make a decision and begin treatment. 

Our natural instinct is to take immediate action — to do something and do it now. This is sometimes necessary, but often it is not. I, along with the CSC, urge all recently diagnosed people to ask their doctor how much time they have to make a decision and begin treatment. In most cases, you have time to do more research, get a second opinion, and even consult with a decision counseling expert to discuss your options, personal goals, and wishes.

Discover More About Making Treatment Decisions

 

2. Know your exact cancer diagnosis and stage of disease. 

Ask questions like:

  • What is the exact name of my cancer?
  • What is the stage of my cancer?
  • Is there anything we know or can learn about my disease, such as a biomarker or genetic test, that will help guide my treatment decisions?
  • Gather the facts and write them down in a notebook.

Watch this 2-minute video about biomarker testing, then get answers to common questions about biomarker testing.

 

3. Communicate your priorities.

Write down your questions and concerns and bring them to your next appointment. Think about what it is you want your healthcare team to know about you personally and your goals as you explore treatment options together.

Get Tips to Discuss Your Priorities With Your Doctor

 

4. Bring a family member or friend with you to medical appointments.

They can listen, take notes, and ask questions during your appointments. Then they can help you talk through the information after the appointments.

 

5. Become informed about your treatment options and goals of care.

Here are some questions to consider:

  • Are there multiple treatments available? If so, what are the different treatment options?
  • What are the goals of treatment?
  • Can my cancer be cured? Or are we treating it with other goals in mind?

 

6. Ask about the risks and benefits of any given treatment. 

Questions can include:

  • How well has the treatment been shown to work in my type of cancer?
  • What are the potential side effects of the treatment and how are they prevented or managed?
  • How will the treatment be given?
  • How often will my treatment be given?
  • How much will my insurance pay for the treatment and all of the surrounding care and how much will I have to pay myself?

 

7. Get a second opinion. 

Every patient has a right to a second — or even third — opinion, and your doctor should support your desire to do so. Oftentimes people seek a second opinion from a doctor in a different cancer center or academic medical center. This helps them to explore all care options and to see if there is any new science they should know about.

Learn More About Getting a Second Opinion

 

8. Ask if a clinical trial might be right for you. 

Many people don’t realize that a clinical trial can be explored at the point of diagnosis and may be a possible treatment option early on.

Cancer clinical trials provide patients with access to new therapies. Watch this 2-minute video to learn about the purpose of clinical trials. Then, explore more educational resources about cancer clinical trials, including how to find one for you.

 

9. Take time to get to know your insurance coverage. 

Most people say you don’t really know how good your coverage is until you have to deal with a serious health issue. Ask if there is a financial counselor or social worker who can help you find out how much of your doctor and hospital bills, surgery, cancer treatment, and other medications and supportive care will be covered under your plan. Ask about co-pays, deductibles, and other costs you may have to pay.

Make sure all the healthcare professionals and the locations of care are considered in your network or that you understand what it means to be treated out of network.

Discover More About Health Insurance for Cancer Patients

 

10. Ask to be screened or talk to someone about emotional and social distress.

Please know that a cancer diagnosis can raise many personal issues, including feeling depressed, anxious, and scared or confused. These feelings are normal and are experienced by many people diagnosed with cancer.

A professional such as an oncology social worker or navigator can help you with your concerns and connect you to resources and support. Help is available, whether you are looking for someone to talk to about the stress cancer has brought into your life or other specific concerns, such as:

 

We Are Here to Help

Call Gilda’s Club Kentuckiana at 502.583.0075 to find free support. Also, our Cancer Support Helpline provides free navigation for people living with cancer and their loved ones, including access to a distress screening questionnaire.

 

While there are many new treatment options available, you must be your own best advocate. Being a self-advocate ensures the care and treatments you receive address your values, preferences, and priorities. Make sure there is transparency and honesty in the options being presented to you and that you are respected, heard, and viewed as a human being and not just a disease. This is why we must all learn to raise our voices in healthcare today.

Editor’s Note: This blog was originally published in December 2015 and has been updated for relevancy.

* * *

As a nonprofit executive, thought leader, and author, Kim Thiboldeaux continues to make her mark on the global stage by ensuring that the patient’s voice is at the center of every conversation about cancer. The publication of Your Cancer Road Map: Navigating Life with Resilience is the latest example of how Thiboldeaux is a relentless ally for patients, caregivers, and survivors. Discover more about Your Cancer Road Map and read an excerpt from the book. 

How Can Cancer-Related Side Effects Impact Mental Wellness

by Kimberly Papay Rogers, PhD

A woman wearing a colorful head scarf embraces her sister along the bank of a sunlit river

Editor’s Note: This is part of our Spotlight on Mental Health series examining critical mental health concerns that affect cancer patients, survivors, caregivers, and providers. 

A cancer diagnosis brings about much more than physical concerns. For many people, the symptoms and side effects of their cancer and its treatment can affect their mental health and well-being.

“When a person is experiencing physical side effects from cancer and its treatment, their outlook can be negatively affected by these symptoms,” notes Brittany, MSW, LCSW, a navigator for our Cancer Support Helpline.

This is especially true for people with metastatic disease, whose symptoms and side effects can be more severe. For example, one physical symptom that metastatic breast cancer patients commonly report is intense pain. Opioids are often prescribed to help manage the pain, but they can lead to another physical problem: increased nausea, a common side effect of opioid-based pain medication.

Our research team set out to understand more about the link between physical side effects and mental health among people with cancer.

Here’s what we learned:  

We examined how symptoms and side effects impact people with metastatic breast cancer. Our research showed that pain and nausea were not just physical concerns for patients; they also influenced their mental health. The more pain a patient experienced, the more likely they were to experience depression and anxiety. The same thing was true for nausea. The more nausea a patient experienced, the more likely they were to experience depression and anxiety.

Read our full research article in the Journal of Patient Experience.

There are likely different ways that pain and nausea can lead to depression and anxiety. Our research team uncovered one surprising explanation: It may have to do with how much pain and nausea interfere with someone’s social life.

“If the physical side effects impact the ability to do things such as attend to daily tasks and responsibilities, socializing, or even participating in activities previously enjoyed, which are important to our overall mental health, it can be very distressing,” Brittany explains. “Over time, this can lead to experiencing anxiety or depression symptoms.”

In our research we found that, among metastatic breast cancer patients, pain and nausea were linked with having more trouble doing work and leisure activities, including activities with family and friends. The more trouble patients faced in these areas, the more likely they were to also experience depression and anxiety.

The reverse was also true: Patients who were more engaged socially showed less severe depression and anxiety and better overall psychological health.

So, what does this mean?

Can people living with cancer improve their mental health by engaging in an active social life, even when dealing with pain and nausea? Possibly, but more research is needed before we can know for sure.

What we do know for certain is, with the right support, people can find healthy ways to cope with the symptoms and side effects of cancer. It’s important to note that people don’t have to navigate their cancer diagnosis and health concerns alone.

Did You Know?

Our Cancer Support Helpline provides free navigation for cancer patients or their loved ones by phone at 888-793-9355 or online via our chat service.

Connecting With Others Can Help You Cope: Here’s Why

For people who are experiencing side effects from cancer and its treatment, it can be beneficial to meet others who are going through similar experiences. Support groups facilitated by trained professionals offer a safe environment to socially engage and share your experiences with others.

“We’ve all felt the physical manifestations of stress and anxiety through headaches, stomach pains, and more,” says CSC’s Vice President of Partner Relations, Kelly Hendershot, LGSW, LMSW. “Similarly, when the body is in pain, the mind feels it. It’s important to have a safe space, like a support group, to process how physical pain is impacting you in all areas of life.”

Gilda’s Club and CSC have 175 locations worldwide that offer free professionally led programs for people impacted by cancer, including support groups. In these groups, pain management and the emotional aspects of being in pain are common topics, says Kelly.

“Rather than focusing on the loss of control you have when it comes to pain, the conversation often shifts to what you do have control over — prioritization,” she notes. “You may not be able to do everything you once enjoyed, but you can prioritize how you want to spend your time when the pain is manageable.”

And when you attend a CSC support group, there’s no need to hide any pain you may be feeling.

“Our groups follow a come-as-you-are mentality, which includes sharing how your pain truly makes you feel,” says Kelly. “When you are vulnerable about how the pain impacts your emotions, there begins to be a shift in mentality. You begin to gain back some control by putting a name to those feelings.”

Find a Caring and Supportive Location Near You

Support groups are just one way to connect with others when you’re coping with cancer and its side effects. CSC locations also offer programs like educational workshops and yoga classes.

“For those who are more doers than talkers, healthy lifestyle activities such as yoga and meditation can help bring calm to your mind in times of pain,” Kelly notes. “In either setting, you’re surrounded by others trying to manage the pain that comes with a cancer diagnosis or its treatment. And that community of shared experience can be powerfully uplifting.”

Do you experience nausea or vomiting? Watch this video for tips to manage these side effects.
Connect With Others Online

If you are living with cancer or navigating survivorship, but you don’t live near one of our physical Gilda’s Club or CSC locations, we have you covered. Connect with others like you through our digital support community, MyLifeLine.

When you join MyLifeLine, you can create a private site to document your journey and receive support from friends and family along the way. There are also discussion forums on a variety of cancer-related topics like Coping With Side Effects, Living With Breast Cancer, Nutrition & Wellness, and more. Members can join as many forums as they wish to connect with others like them.

Build Your Online Community Now

 

To conclude, there are many ways to connect with others when coping with cancer and its side effects. Online discussion forums, support groups, counseling, and peer mentorship are just some examples. Through these types of connections, there’s the opportunity to learn about new coping tips and strategies that have worked for others.

“By connecting with others who have been through something similar,” says our Helpline navigator Brittany, “you are getting first-hand experience of how they have lived and managed the physical side effects of cancer and treatment. This can help a person feel less alone and feel more heard in their cancer experience.”

Regular People Doing Extraordinary Things: Cancer Caregivers Need Support

A woman gently rests her hand on a man's shoulder in a comforting way

Stock photo posed by models: Getty Images

In 2019, Katie found herself stepping into the role of cancer caregiver to her husband when he was diagnosed with pancreatic cancer. A cancer caregiver is anyone who provides physical, emotional, financial, spiritual, or logistical support to a loved one with cancer. “I ended up becoming his full-time caretaker, as best as I could, because I had to work,” Katie said.

Navigating a cancer diagnosis was not new to Katie. Just a few years earlier, she had completed treatment for an aggressive form of breast cancer. Now she was providing full-time support to her husband while continuing to work, because she didn’t have any family or medical leave coverage through her employer. Katie’s husband ultimately passed away. “It’s really unfortunate that I couldn’t take that time away from work to spend more time making his final days and months a bit more comfortable,” she said.

More than 1 in 5 Americans are caregivers. On average, they spend 24 hours each week providing care. A cancer caregiver can spend up to 8 hours a day, or more, supporting their loved one. Many caregivers find themselves balancing their caregiving responsibilities with a full-time job, as Katie did. Others must make the difficult decision to leave their jobs, with the risk of facing setbacks later when they are ready to rejoin the workforce.

In addition to being time-intensive, the demands of caregiving can be hard physically, financially, and emotionally. All these factors put caregivers at risk for substantial distress that can impact their quality of life and physical and mental health.

 

Learn more about Katie’s story navigating cancer as a patient and as a caregiver. 

In 2022, nearly 2 million Americans will be diagnosed with a new cancer. As cancer treatments advance, caregivers are filling a critical support role for loved ones throughout their cancer treatment and beyond. “Caregivers are usually key members of the cancer care team,” notes Dr. Zaleta, “and the well-being of people living with cancer is often dependent on having care and support at home and through treatment and survivorship.”

Caregiving can be personally meaningful and fulfilling. But recent research reveals the toll it can take, too. In a survey of caregivers conducted by the AARP and the National Alliance for Caregiving, 1 in 5 caregivers considered their health to be fair or poor. Caregivers who felt alone, served as the primary caregiver, or lived with their care recipient more often rated their health as being fair or poor. The findings, released in a 2020 research report, point to an urgent national need for caregiver support.

“We often talk about caregivers as if they are superhuman, but they are not. They are regular people doing extraordinary things, and they need and deserve support.” — Alexandra Zaleta, Ph.D.

In CSC’s own research, one-half of caregivers who responded to our cancer experience survey reported anxiety levels that were substantially worse than the national average. Additionally, some caregivers reported providing over 100 hours of care per week, and many reported a decline in their own health.

In our research, we identified several major areas where cancer caregivers need support. These include:

  • Caregivers’ emotional well-being, including depression and anxiety
  • Concerns about caregiving tasks
  • The financial impact of caregiving and cancer care
  • Healthy lifestyle concerns, including how to keep up with their own healthcare needs and exercise

To help address caregivers’ needs in those critical areas, CSC created CancerSupportSource™-Caregiver, a web-based distress screening, referral, and support program for family caregivers and anyone who is a care partner for someone living with cancer.

“The goal was to make a program that can rapidly and efficiently screen for concerns across all the major areas of caregivers’ lives, no matter where they are in their caregiving support experience, and make sure that those caregivers are getting the support they need,” says Dr. Zaleta.

CSS-Caregiver screens for caregivers’ concerns about their own well-being and the patient’s well-being, including their mood, pain, memory, and nutrition, since many caregivers need help supporting the patient in those critical areas. While caregivers are often trained on specific medical tasks, says Dr. Zaleta, CSC’s research shows that many caregivers want more help with things like providing emotional support to their loved ones.

“Cancer caregiver screening, referral, and follow-up need to be the standard of care in cancer.” — Alexandra Zaleta, Ph.D.

CSC’s research team has been developing and refining the CSS-Caregiver program over many years and phases. The finalized version, made possible with the support of the Novartis STEP (Solutions to Empower Patients) Program™, launched in January across CSC’s network of nonprofit and healthcare partners in the United States and Canada. After launching, CSC observed a 37% increase in screening of caregivers in just 3 months. “And we expect these numbers to continue to grow,” Dr. Zaleta notes. “We are also working with hospitals and healthcare centers nationwide to try to expand program access.”

CSS-Caregiver is a standalone caregiver support program, but it can also serve as a companion screening program to CancerSupportSource™, CSC’s distress screening, referral, and support program for patients. The tool is hosted on a digital platform led by Patient Planning Services, a social enterprise of CSC.

“The number-one feedback we get is that there’s no other program out there like this right now,” says Dr. Zaleta, who also noted that it’s uncovering concerns that might not get mentioned otherwise. “Our supportive care staff are experts in psychosocial support, so it’s really rewarding to hear that even among seasoned clinicians, this tool is helping to further enrich their understanding of people’s unique needs and that this helps to enhance their care planning.”

Supporting caregivers is an ongoing healthcare need. Caregiver screening is a good place to start as we continue to gain insights into the needs of caregivers and how we can best support them. Finding additional ways to provide caregivers with medical-skills training, disease and treatment information, emotional support, and financial counseling can benefit the caregiver as well as the patient. We know that quality caregiving leads to better patient outcomes.

“Cancer caregiver screening, referral, and follow-up need to be the standard of care in cancer,” says Dr. Zaleta. “I want to see the caregiver community honored and supported by our healthcare system.”

Are You a Cancer Caregiver? Share Your Experience With Us