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.
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.
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
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.
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.
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.
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.
Try this modern twist on classic hummus, then explore our other healthy recipes designed to support the nutritional needs of people impacted by 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.”
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.
“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.
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.
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.
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.
