A breast cancer journey can bring a wide range of emotions including shock, fear, sadness, and anger. Social and emotion support can be helpful as you go through diagnosis, treatment and beyond.
In this episode, Sandy Finestone joins the podcast to discuss the social services and support groups available for those diagnosed with breast cancer.
Sandra Finestone, Psy.D., is a 30-year breast cancer survivor and research advocate, who has been a volunteer for Susan G. Komen for over 25 years. Dr. Finestone is a licensed marriage and family therapist. She is passionate about educating breast cancer patients about their disease and the importance of breast cancer research.
Dr. Finestone opened the Hope Wellness Center to meet the needs of breast cancer survivors. As Executive Director, she facilitates support groups, meets individually with patients and their families and has created a peer support system where breast cancer mentors help newly diagnosed women with their journey. Sandy helped start the Orange County Komen Affiliate and has been president three times, as well as the Race chair. She is a Patient-Centered Outcomes Research Institute (PCORI) Ambassador and the President of the Inland Empire Komen Affiliate. In 2009, she went to Jordan to facilitate a meeting that taught healthcare providers about support groups for women with breast cancer, and later that year, trained women in Kuwait and Egypt about support groups.
A Project Lead graduate, Dr. Finestone is an experienced grant reviewer for multiple organizations, including Komen. A member of the Advocates in Science Steering Committee, she currently serves as the patient advocate representative on Komen’s Scientific Advisory Board.
Speaker 1: [00:00] Thank you to Sideways Eight for sponsoring this podcast.
Adam: [00:07] From Susan G Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room. A breast cancer diagnosis can bring a wide range of emotions including shock, fear, sadness, and anger. The support of family, friends, and others can be helpful as you go through diagnosis, treatment, and beyond. To help us discuss the ways that you should receive emotional support that you need, let me introduce Sandy Finestone. Sandy, welcome to the show.
Sandy: [00:41] Thanks for having me.
Adam: [00:43] Well, tell us just a little bit about yourself before we dig in here.
Sandy: [00:46] Sure. Well, I was diagnosed a long time ago with breast cancer, actually the dark ages of breast cancer when we thought it was one thing and everybody was treated the same. Things have changed and women have more choices, which is a good thing. The problem with more choices is you need more information to make good choices at a time when you’re probably not thinking too clearly. You’re overwhelmed with fear and anxiety and uncertainty of the future, and unfortunately, that’s the time when you’re asked to make those really important decisions.
Adam: [01:21] Right, and so it sounds like that is the perfect segue into our topic of conversation, which is social support. First of all, how would you define social support and can you help us understand what we’re talking about when we say social support in the context of breast cancer?
Sandy: [01:35] Well, it’s probably defined differently by different people and for different needs and I don’t see that as a problem. I particularly like support groups. I think support groups are really, really helpful. A lot of people stay away from support groups because they think it’s just going to be sort of a little pity party and I can tell you it’s anything but. I do several support groups in my area for women that are diagnosed mostly with breast cancer, but all women’s cancers and it’s kind of a magical thing. It seems like the woman that needs something, there’s someone in the group that has that to offer her and then these relationships go past the support group. Not everyone has a family, not everyone has a supportive family and within the medical community there is a lot of support, but it’s not the same as talking to a woman who has had a similar diagnosis to yours or who was dealing with something similar to yours and maybe has found a solution.
Adam: [02:41] That’s right, that’s right. Yeah, I think what I’m hearing you say is, there are many support groups available and easily accessible. Is that one of the things that I’m hearing you say?
Sandy: [02:51] Yeah, absolutely. So most hospitals have some kind of a support group that’s available to patients and they’re very good and they’re usually run by a professional, which is excellent. Some women don’t have that available to them, say a woman that lives in a rural community or a small community, so online support groups have become very, very popular. I’m not saying that they’re bad, but I think that you need to be a little bit leery of them because some people have a tendency to maybe be a larger voice in a group than is needed.
Adam: [03:26] I think that’s true with many things Internet-based.
Sandy: [03:28] Absolutely.
Adam: [03:29] You’ve got to find the one that works for you and that’s fair.
Sandy: [03:32] That’s right and not everybody’s needs are the same. Some people are information gatherers, some people are looking for a strictly emotional support, a place where they feel cared for and cared about.
Adam: [03:45] Yeah. Wow, that’s amazing. There’s growing evidence that social support increases the quality of life after breast cancer. There’s been even some large prospective cohort studies that suggest that women with more social support have better survival. Are there any other benefits from your perspective of social support?
Sandy: [04:02] Right. Well, I think that I can give you personal examples of women who are perhaps thinking about suspending their treatment because they’re having a difficult time and they come to a support group setting and they’ll see a woman who is maybe a month or two ahead of them in their journey and has ran into that wall themselves and then have found a way to get over it and so they have them do that.
Adam: [04:29] Well, and I love how you framed that out and I think that’s the power of being a part of a community like this, is you can see that other people have made it and they’re walking through it and then you can walk through it as well.
Sandy: [04:42] Yeah, and the other thing about support and you may have already talked about this with some other people, but let’s say your treatment is done. You’re on your road to recovery or however you frame it and, but guess what it’s time for that six months scan and you know you have to do it, but there’s always that little doubt about what if it’s come back and we call it scanxiety. So I’ll see women come to a group, I haven’t seen them in six months, maybe seven, eight months, and all of a sudden they show up and almost without exception their scans are coming up. So the support group is kind of a touchstone place for them. I need to get centered again. I need to feel that I’m going to be okay. I don’t have to explain to this group why I’m here. They understand the anxiety. We’re here for you.
Adam: [05:37] Right, wow.
Sandy: [05:38] They don’t say, “Oh, you’re going to be fine,” because guess what? Not Everybody is, but they know that this is a place where you can bring your fear, you can bring your uncertainty, you can bring your anxiety and everybody’s going to understand.
Adam: [05:55] Yeah. I mean it sounds like a support group is a place where you can be fully you in what you’re going through and have other people around you that understand that to the fullness of what they can. So there’s a lot of issues related to breast cancer that are sort of beyond the breast cancer. There’s relationship issues, there’s body image issues, there’s control issues. What are some ways that social support helps to address some of these issues as well as we already talked about the treatment side and how it encourages through the treatment side, but what about dealing with some of these other deeper issues that are sort of auxiliary to the cancer itself?
Sandy: [06:35] Well, I can tell you that many times bad words are used to describe husbands that aren’t as supportive as they could or should be, but we talk about that. It’s like, okay, you’ve spoiled him for fifteen years. You’ve done everything that he wanted from you and you were happy to do it and now you have some needs. Let’s be a little kind and let’s be a little reasonable. He doesn’t know how to do it, so as a patient it’s your job to teach him what it is you need and how he can give you that support that you need. But there’s lots of disappointments with this and cancer robs you of lots of things. Cancer can rob you of friendships, cancer can rob you of relationships.
[07:22] Sexuality is a huge issue. I have a young woman who is thirty-two. She has four young children. She’s in the middle of treatment. She’s trying to take care of her family. She’s not feeling her best. She’s certainly not feeling good about herself and her appearance. She’s bald, she’s pale. She’s all of the things that we expect patients to be. But she has a thirty-three-year-old husband and it’s a tough thing to communicate. But we talk about those kinds of things with other women and sexuality is not just an issue with young women. We very often think that it is, but it’s not and sexuality is not just intercourse, it’s touching, it’s hugging, caring. It’s lots and lots and lots of different things, but it needs to be talked about and we’re not very good at that. We as a society are not good at them.
Adam: [08:23] No, we are not good at talking about deep things, but it sounds like a support group is a really open and good environment for that.
Sandy: [08:32] I think it is. I think it is, and I would encourage women that are perhaps listening to this podcast that have stayed away from support groups because they think it could be detrimental or a downer or what have you. Give it a shot and then just drop your question into that group.
Adam: [08:51] Let’s talk about how would they go about doing that. So let’s say there’s somebody listening, they recognize I could use a support group or they have a friend that could use a support group at this stage in their walk. What’s the best next step for them to take?
Sandy: [09:04] I think they need to go to wherever their care is being given and find out what’s available and or they can go online and find out about support groups in their area because support group A may not be the one for you. Support group B may not be the one for you, but C is fabulous so I think you need to experiment a little bit. Try it. I had a woman come to group one time and she sat there and sat there and sat there and finally she said, “You know I don’t know how to say this, but I’m really suffering from depression.” And it just like opened the floodgates because someone just had to drop that question in there. It’s kind of like a pebble in the water you just never know where those ripples will go.
Adam: [09:47] I love that. I love that. Sandy, that’s really great advice, Sandy, this was so, so good. Thank you so much for joining me on the show and offering your wisdom and insight.
Sandy: [09:59] Oh, I’m very wise, yeah, I enjoyed this. If I can help with anything else, please don’t hesitate.
Adam: [10:05] We’ll definitely take you up on that and for those of you that are listening, if you or a loved one needs more information about breast health or breast cancer or support groups, you can call the Komen breast care helpline at 1-877-GO-KOMEN. That’s 1-877-4656639. All calls are answered by trained specialist or oncology social workers in English and Spanish, Monday through Friday, 9:00 AM to 10:00 PM eastern time. You can also email the helpline at firstname.lastname@example.org. That’s email@example.com.
[10:43] Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink.komen.org. For more on breast cancer, visit komen.org, make sure to check out at Susan G Komen on social media. I’m your host, Adam. You can find me on Twitter @ajwalker or my blog, adamjwalker.com.
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