How to Start a Cancer Support Group in Your Community

Posted on December 13, 2012 by Sara Goldberger

Members of a support group pose for a photo at CSC Delaware. If you don't live near one of the Cancer Support Community's locations, this blog post will give you some helpful tips on how to start your own group.

“How can I start a support group?” is a question I am often asked. For people diagnosed with cancer and their loved ones, there is increasing evidence that support groups can be beneficial in improving not only the day-to-day quality of life but also on your chances of survival. For some it is relatively easy to find a local group, and there are also telephone and online support groups available. However, for those of you unable to locate a group that fits your needs, here are some suggestions on how to start a support group—but look before you leap! Starting a group can be challenging and time consuming, and it takes a lot of careful planning and thought—yet the rewards can be amazing!

First, check that there is no existing support group in your community that would meet your needs. This sounds obvious, but sometimes just knowing the right people to ask will uncover groups you might not be aware of. Start by asking your oncology nurse, patient navigator or social worker if s/he knows of any groups in your community. These folks are excellent sources of information about what’s going on locally. The Cancer Support Community Helpline (888 793-9355) can also help you locate groups.

So let’s say you’ve done your homework and haven’t found anything that fits your needs. The next thing to consider is why there isn’t already a group in your area. It could be that your situation or diagnosis is unusual and getting a large enough group of people together who are in the same situation and live within traveling distance is not possible. Again, your health care team may be able to help you figure this out.

Once you have determined that there is a need for a group in your area, you will need to think carefully about what kind of group you would like to have. Groups can be general in nature or specifically focused as:

  • For people with specific types of cancer (breast cancer, colon cancer, lung cancer, etc.)
  • Gender-specific (just for men or for women)
  • Age-specific (teens, young adults, seniors, etc.)
  • Just for patients, for caregivers or family and friends or a combination
  • For various stages of the cancer experience (newly diagnosed, treatment, post-treatment, metastatic or advanced disease, long-term survivorship, bereavement)

Next you need to consider what the focus of the group should be.  Some ideas are:

  • Educational with guest speakers who share medical and other resource information
  • Focused more on emotional issues such as coping with the illness and treatment, side effects, family issues, death and grief, etc.
  • A combination of both educational and emotional support
  • A time-limited series such as a six-week series for women newly diagnosed with breast cancer.

How often the group meets is another important consideration. Will monthly or weekly work best? Both have challenges. For monthly groups, if you miss a group then it may feel like a very long time before you will get the support you are looking for. On the other hand, if it is a weekly group, it may be difficult to get there on a regular basis which can defeat the purpose of the group. In order to feel connected and comfortable sharing feelings with others, it takes time and regular connection.

Who should lead the group is an important decision that will be determined by multiple factors.  Options include:

  • Peer-led by a fellow patient or survivor or caregiver or what is also called a “self-help” group
  • Professionally-led by an oncology social worker, nurse, psychologist, chaplain or other health or mental health professional trained in facilitating a support group
  • Co-facilitated by two professionals, two peer leaders or a combination of the two

Here are several questions to consider that will help you decide who might best lead the group:

  • Are they a good listener?
  • Can they be realistic about why they want to do this?
  • Can they be objective and not promote a certain belief system or way to cope with cancer?
  • Do they have the time necessary to plan and publicize the meetings, coordinate special events and talk with individual group members who call with problems?
  • Are they committed to attending the meetings regularly?
  • Are they able to be assertive enough (in a kind way) to keep the meeting on track?
  • Do they maintain a positive, encouraging and hopeful attitude?
  • Are they able to not give advice or tell others what to do?
  • Are they prepared to share in other people’s struggles with cancer or in their grief and fears?
  • Do they know what do to if there is a difficult, rude or unpleasant group member or a conflict in the group?

Although this short guide is not comprehensive, I hope it has provided some ideas for you to consider. Feeling like it is just too much? Don’t worry, support is out there. Talk to the guy next to you at the infusion center. Ask around in your church if there is anyone like you. Ask friends and family if they know someone. The important thing is not to go through it alone!

Posted in Advocacy, Living with Cancer | Leave a comment

Tips for Managing the Holidays when Living with Cancer

Posted on December 6, 2012 by Sara Goldberger

It’s a special time of year if you are celebrating any of the seasonal holidays. Celebrations, religious observations, cooking, decorating, gift-giving, time with friends and family—these are just a few of the things filling up your calendar.  If you or someone you love is also living with cancer, these additions to your already busy schedule may seem overwhelming. TV shows, magazines and the Internet all have suggestions for how to manage the holidays, but there are also some tips that may be helpful if cancer is in your life. Although you may not like it, it may be that for this year, you won’t be able to do all the things that you have usually done to celebrate. That’s OK. Accept that this year may be different, and make adjustments: ask for help, cut back, say no on occasion but also remember to enjoy yourself and celebrate. Here are some suggestions for how to manage to take care of yourself and to make sure you can also enjoy those special times.

Be Realistic – Know your limits. You will enjoy the holidays more if you are honest with yourself and others about what you can and can’t do. Exhausted by treatment or caring for a loved one? People will understand. If the smell or sight of all that holiday food doesn’t agree with you, say no to those invitations. If decorating the tree seems overwhelming, maybe this year you can enjoy helping others decorate theirs.

Create new traditions - Remember that every “tradition” started with year one. Instead of getting gifts for everyone maybe try a Secret Santa. Always the one to host the New Year’s Eve party? How about trying a potluck this year? If you worry that you won’t be up to celebrating on the actual day, keep it low key and maybe a celebration later in the year will work for you.

Simplify – If you exchange gifts, try shopping online instead of at the mall. If cooking and baking are on your list, maybe there is a simpler version of a recipe or instead of 5 different kinds of cookies, bake two or start a cookie exchange. Order pre made latkes. Instead of cooking a meal, maybe go out to a restaurant.

Let Others Know What you Need (and then let them do it) – Although we might wish otherwise, friends and family aren’t mind-readers. Try as best you can to ask for help. This can be practical or emotional support. Ask for their understanding as well if things will not be as usual this year.

Be Good to Yourself – Try to keep up with your regular wellness routines. Eat as well as you can. Try to get regular exercise, meditate and be sure to get enough rest. Also be aware of your emotions. For some, the holidays are a joyous time but you may not be feeling that way this year. Try to enjoy yourself as best you can. If you are feeling sad or depressed, you may find that your spirits are lifted if even for only a few moments. Whatever you are feeling is OK. If you are feeling especially sad, anxious or overwhelmed, reach out to someone and share your thoughts. It could be a friend, family member, support group or spiritual leader.

Posted in Living with Cancer | Leave a comment

Social Ties and Cancer Survival

Posted on November 20, 2012 by Sara Goldberger

For 30 years the Cancer Support Community has promoted the idea that social and emotional support are an essential part of cancer care and can affect outcomes. In a recently published study, researchers at Kaiser Permanente have shown that strong ties with friends and family may help women with early stage breast cancer survive. These researchers studied 2,264 women and found that survival rates were higher for women who reported a strong network of support. The findings also described that it was not only the number of relationships that a woman has but also the quality of these relationships that was important in survival. Support included both practical help and emotional connections.

So what does this mean on a day-to-day basis? If you are someone diagnosed with cancer, get or stay connected! Reach out to others and don’t isolate yourself. Friends, family and co-workers can provide both emotional and practical support. Don’t be afraid to ask for help you need and don’t say no to offers of help. Feeling alone? Call a friend, join a support group, go to church. Need someone to help prepare a meal or give you a ride to a doctor’s appointment? Just ask. Most people want to help, they just don’t know what to do. Don’t you feel good when you are able to help someone else?

If you know someone who has been diagnosed with cancer, reach out to them. Stay connected. Offer to help with practical matters or ask what you can do to help. Give them a hug, just listen, be there. Knowing that you are involved and care will not only help them feel better in the moment but can also have a positive effect on their survival. You can make a difference.

As Helen Keller once said, “Walking with a friend in the dark is better than walking alone in the light.”

Read the Huffington Post article, “Breast Cancer Study: Strong Social Ties Improve Chance Of Survival,” here.

Posted in Living with Cancer, Research | 1 Comment

CSC Trains New Open to Options Specialists to Help People Facing a Cancer Treatment Decision

Posted on November 19, 2012 by Sara Goldberger

On November 7, I spent the day with 20 of my CSC colleagues who gathered in Los Angeles to be trained to offer CSC’s novel Open to Options™ treatment decision counseling program. These 20 licensed mental health professionals are now Open to Options Specialists who can help people who need to make a decision about their cancer treatment feel sure that it is the best decision for them.

Hearing the words, “You have cancer,” is the beginning of a journey that for most people is overwhelming and stressful.  Among the most important decisions you will face is deciding what the best treatment option is for you—yet many people feel unprepared to make this important decision. How does someone even go about understanding the complexities of some of the new cancer treatments? How can you decide which of several options might be best for you?

Open to Options was designed by CSC to help those facing a treatment decision create a personalized list of questions to discuss with their doctor. Available at no cost, this program is available at local Cancer Support Community centers and over the phone. Our Open to Options Specialists can meet with you and help you to identify the questions and concerns you have about the treatment options your medical team is suggesting. Open to Options Specialists do not provide medical advice or tell you what to ask. Rather, through a guided interview lasting about an hour, they help you to think about your beliefs, values, goals, concerns and worries and turn this into a list of questions.  You will come away from your meeting with a list of your questions that you can share with your doctor. Having the answers to these questions will help you and your doctor work together to make the best possible decision about your treatment.

To learn more about Open to Options visit our website.

Click here to find a Cancer Support Community near you.

To schedule an Open to Options over the phone, call 888-793-9355

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CSC at the Gerontological Society of America Conference: Part 3

Posted on November 17, 2012 by Chris Gayer

Hello again from the 65th Annual Gerontological Society of America (GSA) conference in San Diego! I just finished presenting my poster based on my dissertation work related to the impact of context, and cancer experience on cancer-related decision making.

The findings suggest that having been diagnosed with cancer in the past does seem to have an impact on decision making competence in cancer-related and non-cancer-related decision domains throughout the survivorship continuum. These results were met with great interest, particularly among those working in cancer research in both clinical and research settings. One of the individuals most vocal about her interest in this area of research was a Program Director at the National Cancer Institute and recommended that we explore opportunities for funding at the NCI.

Understanding older adults’ decision making competence, particularly in the context of cancer, is exceedingly important as the older adult population continues to grow, as treatment and health-care choices get exceedingly more complex, and as the influence of the older adult population on our social policies, and larger economical systems continues to rise.

I am really looking forward to speaking more with members of our CSC team about how we might integrate this line of work into our research agenda. It’s been a great conference, and I’m ready to head back to Philadelphia and share all of these wonderful experiences with my colleagues.

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