The Importance of Joining a Cancer Support Group with Selma Schimmel
WebMD Live Events Transcript
Selma Schimmel, host of the nationally-syndicated radio talk show 'Group Talk' and author of the book 'Cancer Talk,' will be discussing how support groups can be one of the best links to healing cancer.
The opinions expressed herein are the guests' alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.
Moderator: Welcome to WebMD Live. Today we are discussing The Importance of Joining a Cancer Support Group, with Selma Schimmel.
If you'd like to ask Selma a question, type /ask followed by your question (e.g. "/ask How are you?")
Selma, welcome to WebMD Live. What does your book, Cancer Talk: Voices of Hope and Endurance from 'The Group Room,' the World's Largest Cancer Support Group, talk about?
Schimmel: Cancer Talk is a collection of voices of cancer survivors, family members, friends, medical professionals, physicians, nurses, the whole team, and it's an exchange, an active dialogue from everyone who's been touched by the cancer experience, and sharing everything from doctor diagnosis to issues of the caretaker, dealing with the changing health care delivery system, helping people tap into issues of spirituality, faith and prayer ... talking about morality issues, maintaining quality of life, dealing with side effects ... And so what's special about the book is that it's actually a support group in a book. Somewhere in there, there will be a voice that'll resonate with yours, because it's a collection of all these voices and it's a shared perspective of the cancer experience from all these viewpoints.
Moderator: Is the book currently in print?
Schimmel: The book is currently in print, and about to go into second print.. and it's available at Barnes & Noble.
Moderator: What exactly occurs during a typical support group session?
Schimmel: A lot of elements go into that answer based on the orientation of the support group. Vital Options, when we were community based, what took place was our groups were facilitated, and these aren't therapy groups, but facilitated by social workers or psychologists, and each group would take on a life of its own, and people get scared and go to a support group and don't know what to expect. Support groups are not therapy groups, and there's a real distinction. A facilitator is helpful to guide the group along, and identify issues that may require extra support.
What should happen in a cancer support group, is that it should be a place where you get good emotional support and information. That you have empathy and you're able to share your experience with people that are walking down the same path. What scares people about going to a support group is, are they going to see people sicker than they are, confront issues of mortality when they see that. We have to teach people that everyone's cancer experience is uniquely theirs, and someone going through a bad time doesn't mean you'll go through a bad time, but support groups help to validate your experience. Cancer patients who attend support groups lead good lives and survive longer than just receiving medical treatment alone, because a support group complements the medical aspect of treatment. It helps you cope, it's a safe place to share your innermost feelings, and know what you're going through, you're not going through ... Family members need support, too, and there are groups in certain organizations that are specifically designed to help you cope with either particular cancers, or if you're going to have a bone marrow transplant, then you find that group... or if you're dealing with issues after treatment, then you find that group. What makes the group room on the radio show special is that we give people their anonymity, which makes it real easy for men to participate.
Moderator: Are there support groups for family members?
Schimmel: Absolutely, and caregivers have been neglected for a long time, and they're on the other side of the coin of cancer. They go through tremendous feelings of anger, frustration, burn out, guilt. They need support and yes, more and more organizations offer support groups to family members. In Cancer Talk, there are a couple chapters dedicated to the issue of the caregiver.
Moderator: Do support groups cost anything to attend?
Schimmel: Support groups we're affiliated with cost nothing, and in my opinion, support groups shouldn't cost money. But if you're going to an organization and want to make a contribution, I'm sure it's appreciated, but support groups tend to be free. It's important to know that support groups are coming from a credible source, but before you get involved with one, make sure you do a bit of research to make sure you're with a legitimate one. When I was diagnosed with cancer, I went to a group that wasn't the right one for me. You can't judge a support group by one group, you have to go to another. Some support groups are drop-in, some are time limited, so you never know what'll happen week to week. If you go one time and don't like it, its hard to assess from one interaction. You have to go a few times to decide if its working for you. They discover in the process of going to offer support to someone else, that they're benefiting... that they're getting the type of support they didn't realize they were in need of.
Moderator: Are support groups for everybody and are there people that may not find them helpful?
Schimmel: Support groups are not for everybody, and there are people... and there's no judgment here. Support groups don't work for everybody. They work for a lot of people, but not everybody. But that doesn't mean one should be without support, and so there are other ways to get support now. For me, it's what I love about doing a radio show, because people listen in and get the support they want without having to go to a support group. But yes, I agree that not everyone is suited for a support group.
Quick GuidePancreatic Cancer Symptoms, Causes, and Treatment
Moderator: Will you share with us the story of your battle with cancer.
Schimmel: I had a lot to overcome. I was young when diagnosed, and my diagnosis followed on the heels of my mother's death, who was diagnosed with ovarian cancer. I was 26, when I lost my mom abruptly. Then my uncle died from a brain tumor, and lost my grandmother to uterine cancer. I found my breast lump, and was told not to worry, that I was too young for cancer. So I had a lot to tend with emotionally, and my cancer changed my life in that it became my life, and my vocation, and I started Vital Options in response to my very difficult experience, which included lumpectomy, radiation, and chemotherapy.
Support groups provide resources to cancer patients, and it's a great way to exchange information about side effects and resources in general, and what's happening with clinical trials, and new information that could be relevant.
Moderator: What problems do most cancer patients face?
Schimmel: There's a whole wide range of emotions we deal with, and there are different stages we go through in response to where we're at. You get that diagnosis, and feel completely out of control, you're overwhelmed and over saturated. And your life is turned upside down, and no matter how treatable your cancer is, you feel totally threatened by the experience. And until you decide on a course of action, you feel out of control. It's an emotional tidal wave, but we deal with issues of body image, confusion over treatment, side effects, women may be dealing with spontaneous menopause, and issues of fertility. There may be issues in the workplace, access to medical care issues, emotional issues after cancer -- how do you integrate this experience into your life, how do you live with the memory, recurrence, relationship issues... Facing mortality -- big issue.
Moderator: What takes place on your radio show?
Schimmel: I moderate the program and, along with me, there's always a medical oncologist or radiation specialist. Our therapist is with us, who herself is a survivor of breast cancer. When a person calls in, they talk to an oncology social worker, Carolyn, who talks to the caller and makes sure it's an appropriate call, and then we take questions on the air. People can direct their questions to the doctor to get a clinical answer, and usually behind a clinical question there's emotional issue that's going on.
Moderator: So it provides information and support.
Schimmel: They use us to clarify information, but we're like the support group -- all you need is a telephone, your radio, your heart, your head, and ears. And you can be anywhere, your car, or a hospital bed... and you can listen in to the world's largest support group, and get a perspective with what's going on across the country. Information, support, resources, and we also talk about specific diseases, as well as open shows and programs that deal with specific cancers, and we also do remote broadcasts from major cancer centers across the country. We have one on March 5th from USC, and we'll invite people from that city to come out and become a part of a town hall meeting type of support group. My favorite shows are the open shows, which means that the caller can completely drive the direction and theme of the show. We do a lot of disease-specific programming, but when we do an open show, it's the audience that tells us what's on their mind, so those are my favorite. Very special programs are those we do with children with cancer, shows that deal with intimate emotional issues ... we did a Valentine's show about intimacy. I look at cancer as a metaphor for all the malignancies in life we have to deal with. I had a solid tumor, but someone else might have a substance abuse problem, but you look at it as a metaphor for all the malignancies in life people have to live with... and then the show transcends cancer.
Moderator: How has the Internet changed support groups?
Schimmel: One of the reasons Vital Options made a transition from a community-based young adult organization to a radio show no longer limited to any age at all, is because of the Internet. We realized that a lot of people were using the Internet for support rather than go to a physical support group. It began to worry me if patients were getting correct information, or if they're joining a chat group on the Internet, if it was a truly legitimate site, a helpful healing site. I worry about vulnerable patients getting sucked into a situation where someone is trying to sell them something, or a charlatan. Overall, I think the web has been an incredible opportunity for patients not to feel alone. I love the thing we're doing with the radio show, that its simulcast on the web, so we're about to marry the world wide web and radio. Every major cancer organization has a website, so support and information is available at your fingertips! At vitaloptions.org, and they go to our resource section, we've linked many national organizations to our site. So its sort of one-stop shopping.
Moderator: Sounds like a great union: radio and the web.
Schimmel: It's incredible.
Moderator: Do you feel that online support groups are effective, or do you feel that there needs to be more human contact?
Schimmel: I feel that the human contact is important; cancer care is a very good example. They do support groups on the Internet, and I trust them completely. And WebMD does one that's simulcast with cancer. I think you have to look at the source, and I don't want to judge the ... if someone tells me they're getting great support from an Internet group, then I'm glad they're getting that support. You have to see what else is out there that mirrors your own philosophy and needs, but I'd still encourage people to get into a setting where you can look into the eyes of other survivors. It's where real friendships form, and a real sense of another human being can be developed one on one, along with whatever you're doing on the net or whatever support you're getting. Let's not forget to mention the importance of finding humor in the experience.
Moderator: What organizations support and conduct support groups?
Schimmel: Virtually every organization, obviously cancer care... the Wellness Community, Lymphoma Research Foundation of America... we do ours on the air. I don't know of a support organization that doesn't have support groups as part of their mission. So I encourage people to go to www.vitaloptions.org, and go to the resource section and check out a variety of groups. This weekend, I promoted a new lesbian cancer support group in Southern California. And the Brain Tumor Foundation has groups. Prostate Cancer Support Groups. So you name it, there's a support group. Some are disease specific, and some are much broader than that. There's too many to mention.
Moderator: What advice can cancer survivors offer to other cancer patients?
Schimmel: I support the ability to share common issues, will lead itself to the advice of how each person dealt with that particular issue in their lives. I think what we can do for each other is inspire hope, because I believe whatever stage of disease you're in, there's always hope. You hope for different things along the way. I think we can teach each other how to distinguish the differences between healing and curing, and support each other to cope, and cope with side effects. It's very easy to feel isolated, that you're the only one going through a particular emotion, or problem. So what you discover, and it may not be so much advice you're getting, its an exchange of information and common feelings. So when you sit with someone who has empathy, you exchange information, and it takes on a life of its own. People who meet in support groups, they look and realize that the odds of each other meeting without the cancer would have been remote. So you find these unlikely relationships that develop as a result of this cancer.
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Moderator: What recent topics have you had on your program?
Schimmel: As I said, Valentine's Day we did a show on sexuality, fertility, intimacy, and love. What we really talked about was the essence of making love. It wasn't so much about the body part, but the heart. Dealing with issues of body image, or men who have been through prostate cancer, and learning about the fact that it's the creativity that goes into a relationship. My sister said after the show that this was a program that really wasn't about cancer, and people who didn't have cancer could have learned a lot about what makes a relationship truly passionate, what's based on issues of trust, and the aspects of lovemaking that transcend the physical. So this weekend, we did an open show, and we were all over the map.
Moderator: When and were can people get involved with your program?
Schimmel: The radio program, first of all you can go our website at www.vitaloptions.org. The program is simulcast in real time on the web, as well as on the air. We're heard throughout many major cities. West coast time, the show airs 1-3 p.m. ... and so East Coast would be 4-6 p.m. If people can't hear the show in their city, they can check it out on the web, or call 1-800-GRP-ROOM (800-477-7666). Even if they can't hear the show in their city, if they call in to the show while we're on the air, they'll hear the show on hold... and they can still call into the program.
Moderator: How do you suggest someone should find the one that will help them the most?
Schimmel: It may require going to more than one group, and I realize we're all exhausted going through cancer treatment... and it's real tough to muster up the energy to go to a group. But you can talk to your social worker, or your doctor, or other cancer patients maybe you meet in the waiting room or the treatment center. Or they can call an organization like Vital Options, and say this is what I need, this is where I live, then we'll help you find a group and we'll give you more than one to call. And you may have to go in for a visit to see if it works for you, and if the first group doesn't work, that doesn't mean groups won't work for you.
Moderator: Are family members welcomed at support groups?
Schimmel: Many organizations will allow for that, and if they don't, in a patient group, they will have a group for significant others. I think there's a need to have groups available for couples and family members, but I also think that family members need and deserve to have a group just for them. So they need a safe place to express what they're going through. Significant others go through... imagine, you have a life outside the life of cancer that you're dealing with the one you care. If you're a husband and your wife has cancer, you still have your job, and when you come home, you may have three young children running out, so now you're doing double duty. You're dealing with your business, medical issues, insurance, more errands, and maybe someone that can't do all the things s/he was doing before cancer. Significant others need special support and recognition, and a chance to replenish themselves emotionally so they ...
Moderator: What does the care giver go through?
Schimmel: There's an important changing role for the care giver. There was a time when patients went into the hospital, and have a procedure over several days, but now hospital stays are much shorter... so the role of the care giver is changing, because suddenly s/he has to carry out some of the responsibilities that used to fall on nurses in the hospital. Maybe changing tubes, dressings, giving medication... and in addition to all of that, they have to juggle their responsibilities. So that's one of the issues, unique to the role of the caregiver that didn't used to exist. The caregivers deal with their own sets of emotions. They are themselves feeling that they didn't sign up for this, having fun in life may be difficult, people will ask what they can do to help a friend ... caregivers need extra support and attention. Everyone calls to find out how the patient is doing, but people need to call to find out how the caregiver is doing. Volunteer to do something tangible; the laundry, or shopping, or a ride to the doctor. Give the caregiver or the significant other some time off -- take him or her out, encourage communication, or give them the night off. The caregiver deals with feelings of anger, and then may feel guilty for feeling angry. They're exhausted. Who supports the caregiver? Doctors need to work with the caregiver too. The caregiver also has a special role -- they can be the patient's #1 advocate, and allows the caregiver to feel that they're doing something positive. What worries me is that there's not enough support for the caregiver. There is a National Family Caregiver's Association - 1-800-896-3650. Or call 301-942-6430, and their website is www.nscacares.org
Moderator: How did you work through the initial diagnosis: CANCER?
Schimmel: First I had to work through a lot of anger, and focus that anger into something positive. I knew I had to get a hold of it, and I also knew I was real scared, and I masked my fear with anger. So the first thing I had to do was really deal with the fact that I lost my mother to cancer, but that didn't mean I had to die too. I had developmental issues I had to contend with -- such as, I went to a support group that I was the youngest person in the group, and everyone else had children, family, businesses to deal with ... and I was just returning to school. I couldn't relate to my group, and so I had to start one for young adults. Then I had to really get into my head, and deal with brain and not my emotions ... because I had important decisions to make about the treatment. So I learned not to be emotional, and be focused ... I had to be clear-headed. Let me tell you, first I had to go through a couple weeks of big emotional ups and downs, fear, depression ... all of that. Then I had to go from doctor to doctor, because I was determined to find a doctor I could partner with. I knew my relationship with an oncologist would be a long-term one. I had to find one I could communicate with, and would let me be a partner in healing. No one has to make a decision about treatment overnight. You have to cut yourself enough slack and do the research. I went doctor-shopping, then looked at all my treatment options, because the decisions I was about to make, whether surgical or chemotherapy, were not reversible. I would have to live with my choice. And that's why I feel so strongly that everyone needs an advocate to help them. Don't go a doctor's visit alone -- take someone with you to write down questions. If you have someone with you, you can have a discussion about what was said. Someone else was there who was clear and could clarify information.
Moderator: Is the emotion more difficult to deal with than the treatment?
Schimmel: The emotions can definitely color the whole treatment experience. Oftentimes, the treatment is worse than the cancer. I didn't feel sick from my cancer, but from my treatment. There are drugs available for nausea, fatigue ... what we hate hearing is "you're lucky to be alive". Quality of life is very important to us. But I went through chemo without any of the drugs available today for nausea and vomiting. So quality of life is really becoming a factor in oncology. Finally, thankfully.
Moderator: What if my physician says let's go right in to surgery?
Schimmel: My reaction is to go get a second opinion. You can't be rushed into surgery. Any doctor, if you're worried that you're going to make the doctor feel bad ... well, it's your life. Most doctors will feel very supported and satisfied if their patient gets a second opinion, because when the patient comes back, they have a much more compliant patient. There may be an individual case where a growth may have to be removed immediately, but overall, you can take a week or two to make some decisions -- you have to, because you'll have to live with those decisions. But I'm an advocate for second opinion. But if someone is having an obstruction, there are situations where surgery becomes a vital necessity ... but that's not the norm.
Moderator: How do you feel about alternative cancer treatments?
Schimmel: I prefer to call them "complementary," the reason being -- and there's a chapter about it in Cancer Talk -- usually when you say "alternative," you're talking about something you're going to go to "instead of." We live in a Western culture, and there's a lot to be said about western medicine. Given that, I also believe that integrating complementary approaches is the best of all worlds. Some people seek out alternatives to cancer therapy because they don't trust conventional medical approaches. Again, I'm an advocate of integrating complementary medical therapy with medical care. I myself integrated homeopathy, Reiki (which is hands on), diet, meditation, acupuncture...
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Moderator: How about Laetrile?
Schimmel: I don't think its the cure for cancer. People are hopeful that they will find a non-toxic cure for cancer, and the problem for those of us who follow conventional therapy with unconventional approaches, is that we want to see data. If someone would really do an authentic clinical trial on Laetrile, then maybe we could document whether or not if has any effect at all. The clinics are all in Mexico, and someone is going back any day and say that the FDA is preventing because of the economics. Let me tell you, doctors gets cancer, doctor's children get cancer ... if there was a cure, do you honestly think it could be suppressed? I say not. But I will say that people recognize the incentive to take their last dollar and get to Mexico by promising you a cure. When my mother was dying, and I speak from experience, I drove to Mexico and checked out one of their clinics ... and I remember asking them where they kept their oxygen, and there wasn't an oxygen tank the ... that clinic, this was their last hope, and it was a crime. They went there, but the odds were that they didn't leave there walking out. We hear about all the people so-called "cured," but what about all the people that died? You want to integrate Laetrile with your conventional treatment, go for it. But don't abandon western medicine. When I was diagnosed, I went to talk about special diets, and the doctor pulled on my earlobe and said based on my earlobe, he could tell why I had cancer, and asked me to go on his diet without chemotherapy or radiation therapy. This was not the diet for me as a Western woman. How could someone say to me, "Trust this diet based on my earlobe, and don't take any conventional treatment." We would never be on this chat today. But what I did do, was de-toxed, and integrated that diet into my life in conjunction with my chemo and it made me feel more powerful and more in control, and that I was being kind to my body and doing something to modify the more toxic impact of the conventional clinical option that I had chosen for myself.
Moderator: What can the medical community offer to support groups?
Schimmel: One of the things they can do is acknowledge what many physicians are doing, which is the importance of support groups. They can participate in the groups, and actively refer their patients to groups. When you go to your doctor, your doctor should be able to tell you which they're involved with. Oncology nurses are great, social workers are great, and doctors are now coming around. Doctors need to treat more than the body, because we're not our disease. We want to be seen as more than our disease. Whatever was going on in our life before cancer, is still there. So doctors can help us integrate the experience of cancer into our lives, and make sure they're not just looking out for our clinical issues, but they're sensitive to what's going on with us emotionally. Doctors need to talk to women about issues related to sexuality, and body issues unique to women who are thrown into spontaneous menopause because of HRT or surgery or chemo that they're receiving. Doctors need to address not only those issues, but have a full discussion about what you can expect from side effects. And when we talk to them about side effects, to have them take it seriously and not just come back with "be lucky you're alive".
Moderator: We are out of time, Selma. Do you have any closing remarks?
Schimmel: Be strong, be tough, be wise. No one has to go through cancer alone, and I beg people to reach out for support. It doesn't mean you're weak, or you're not coping... it means you're human. Call Vital Options, our number is 800-GRP-ROOM... We are just a phone call away. Check out our website at www.vitaloptions.org. If you need a resource not listed, send us an e-mail or give us a call. We want to help people find a voice through the experience of cancer.
Moderator: Thank you for joining us, Selma. Please join us again Wednesday at 6 p.m. EST in the Women's Health Place Auditorium when we present a live audiocast, "Lymph edema: A Breast Cancer Patient's Guide to Prevention and Healing" with Jeannie Burt and Gwen White.
Thanks for joining us.
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