Maggie McKay (Host): Navigating cancer is a tough road. So today, our guests, Gina Franco and Kerri Susko, will discuss how to cope throughout your cancer journey. Gina is a Nurse Practitioner that has worked in oncology for more than 40 years, and Kerri is a Licensed Clinical Social Worker. Welcome to Flourish, a podcast from PRISMA Health.

I'm your host, Maggie McKay. Thank you both for joining us, Gina and Kerri. It's great to have you here today.

Kerri Susco, LISW-CP: Thank you. Great to be here.

Host: Would you please introduce yourselves? Gina?

Gina Franco, NP: Hi there. My name is Gina Franco. I am a Nurse Practitioner, as Maggie's already said. I'm also the Director of the Center for Integrative Oncology and Survivorship. We use the abbreviation CIOS at the PRISMA Health Cancer Institute, and I've been here since 2012.

Host: That's awesome. Kerri?

Kerri Susco, LISW-CP: Hi. Yeah, I provide counseling to individuals who are diagnosed with cancer and their family members at the Center for Integrative Oncology and Survivorship. And I also direct our cancer support community, which provides all kinds of different programming to anyone who's been impacted by a diagnosis.

Host: So Gina, let's start with you. What advice do you have for someone who is just beginning their cancer journey?

Gina Franco, NP: One of the things I say frequently is you don't know what you don't know, and that is often patients and their families are so focused on the medical treatment for their disease, whether it's surgery, chemo, hormonal therapy, or any combination of any of that. But there's also the supportive side to deal with all aspects of someone's care and to seek whatever support therapy or whatever the support system or department is in a cancer organization and use them. Often we get people that say, I'm just too busy to do one more thing. But it's often those very support pieces that help people cope better and do better in the long run.

Host: And Kerri, do you have tips on how to share the news of a diagnosis with friends and family? Is it okay not to share your diagnosis?

Kerri Susco, LISW-CP: It's certainly okay to not share the diagnosis, but there is a great importance in being able to let people know what's going on. If you don't let them know, they won't be able to help you. It's also important to think about what you're comfortable disclosing and maybe scripting it out before you talk to people, making different scripts for different individuals, so that you feel more in control when questions are asked, as they certainly will be.

Everyone has the questions and opinions. It's important to think about what you want to say so that you can honor your own feelings. And it's also important to let other people have the experience with you because cancer doesn't only affect the individual, but it affects the entire family. And by opening up the communication, It's really helpful.

Host: That's a really good idea. I would never even think to script it out, but of course, that would be very helpful.

Gina Franco, NP: The other piece that I often say is just because you share that diagnosis doesn't mean that you have to accept all of the information and recommendation back. You're sharing what you want to share, but often people will do, whether they should take vitamins or eat differently, and you can acknowledge that you know, we're just letting people know, but we don't need too much information at this point because we're still trying to create a treatment plan with our cancer team. So that at least you're not getting a lot of chatter about what to do.

Host: Isn't that the truth? Don't you find that when you tell someone anything about anything, medical diagnosis or whatever, they always tell you their story and their advice and how they did it. So that's another good point. These are so useful. Gina, what would you say to someone who's hesitant or resistant to joining a support group?

Gina Franco, NP: So we're not here to change people's coping mechanisms, so if they are not people that have really benefited from groups prior to this, they're probably not going to do this in such a stress situation, they're not going to do as well. So, we're not there to change them, we're trying to figure out how have they, how have they dealt with stress in the past and then utilize that, whether they read, get information, whether they use a support system and find that out.

Now, that doesn't mean you can't ask people to try things, but there's a difference between asking them or suggesting it and really saying, oh, you really should do this. And then the other thing that I'm sure Kerri will add to this is there's many different kinds of support groups.

And so just going to one does not mean that that's how all of them are. Not acknowledging that there is different types of support and support groups.

Kerri Susco, LISW-CP: Yeah, I'll add on to that that every group has its own flavor, but as much as family and friends want to understand and be supportive, it's very hard for anyone to really understand what it's like to have a diagnosis if they haven't had one. Support groups really provide an opportunity to connect with other people who really get it.

It's important to recognize that you're not the only one going through something. That your feelings are shared by other people. And actually going to a support group can help bridge the gap between intellectually knowing that there are other people and really feeling that emotionally. And groups not only provide connection to other people, but they help facilitate learning how to manage symptoms and adverse effects from individuals who really know how to do that because they're going through it as well. And connection with other survivors has been shown to decrease stress and anxiety.

Host: And you know what? When we think of support groups, a lot of us think of in person group meetings. Is that what support groups look like these days? Because there's so many things on Zoom now.

Kerri Susco, LISW-CP: Actually, most of our support groups have remained virtual since the pandemic. It has been really helpful, especially for those people who live far away. Transportation's no longer an issue. When people aren't feeling well, they can just get up and turn on their computer. Most platforms allow you to call in as well, so it does give people options.

And I really have found that people are able to connect virtually. We may have thought before that that wasn't possible. It certainly isn't exactly the same, but it certainly is possible.

Host: Gina, you mentioned earlier that support groups, there's so many different kinds now. What did you mean by that? Like, give us some examples.

Gina Franco, NP: Well, there are caregiver support groups. There are cancer survivorship for just survivors only. As we mentioned, there are virtual as well as in-person support groups. There are even chat forums that can be support groups or even in Facebook you can have groups there. So they just can take on many different places as well as organizations or whether they're just individual groups.

Kerri might have a little bit more to say on that.

Kerri Susco, LISW-CP: I think it's important to acknowledge that perhaps historically groups have been thought of as people sitting around talking about cancer and that you could be on the hot seat to express emotions. And at least, for the groups that we provide, like we said, every organization, every group has its own flavor depending on the organization and the facilitator.

But, we run our groups by talking really about life and the challenges of life and of course cancer comes up organically because cancer is another layer of everyone in the group's life.

Host: And, Kerri, why is self-care important after a cancer diagnosis?

Kerri Susco, LISW-CP: Well, I'll let Gina speak to the medical reasons of self-care being important but I will say that self-care is not only physical, and although in this society we typically think of self-care in terms of things like diet and exercise. Self-care is also about exploring and better managing thought processes and also our internal dialogue.

Self-care is about identifying wants and needs and being able to ask for those, which is so critically important when you have a cancer diagnosis.

Gina Franco, NP: Yes, I agree. And so self-care um, after a cancer diagnosis and during your treatment, I do tell people to not stop doing what they've been doing because often we get family and friends that are well meaning and they tell people to rest and to, that they'll bring over casseroles and all kinds of comfort foods.

But this is really a period of time to, to keep moving as long as you can. And there's no medical reason why you can't. We do not want you sitting and resting. We want you staying at least in the physical shape that you're already in. So I do try to make note of that to people that are newly diagnosed.

And then also to well meaning people, it's not a time to make that person like you're doing all of these things for them, it's really better to allow them to have some control and to feel good about what they're doing about staying active, not making them feel like an invalid or incapacitated or can't do it.

But the other part of self-care once you are done with treatment is that there is enough research out there that shows us that the things that you can do to maintain your body in the most optimal condition, the best version of yourself through plant focused eating, we realize people can't be vegans, but at least having a fair amount of plants in their diet, not too much ultra processed food, staying active, exercising at least 150 minutes per week, no alcohol.

And de-stressing and getting rest and staying, staying in touch and feeling like they belong in society. Those are the critical pieces of self-care that are the puzzle of doing as well as you can after a cancer. And those are the things that we tell people in our survivorship visit that we have during when a patient has their treatment.

We have what we call an IOS visit that they come and we talk to them and we kind of meet people where they're at in terms of what, where are the problem areas that they might need to focus better on or even help them focus because sometimes they just don't know how to, tackle something and so we can give them pointers how to do that or resources in the community on how to do that.

Host: I think that's a good point you brought up about staying connected with your friends. I'm sure a lot of people feel crummy during treatment and they just want to kind of hide out and hibernate, but it's good to be around the people who love you. So Gina, how can family and friends better support a loved one with cancer? I mean, you mentioned a few things, but what would you say are the top two?

Gina Franco, NP: Well, during treatment, it's really knowing what the plan is and sticking with the plan and then getting, if, you have questions, to let the patient ask those questions to their provider and then really kind of work with that patient being, the center of their own locus of control, rather than trying to take over for them.

Because it's important they stay there. They really, like, like Kerri said, this is a pretty individual experience. You go through cancer and treatment and your body is changing before your eyes. We kind of call it your new normal. But even when you get your new normal, you're kind of changing even then, because you don't really know how you're going to feel after treatment.

You don't know how you're going to feel during treatment. So it's really meeting that person where they're at and allowing them to be there, but also using the medical team and the support team to help that patient in terms of whatever barriers they might be experiencing. Kerri, do you probably have a little more on that being a counselor?

Kerri Susco, LISW-CP: Yeah, I mean, just to piggyback it, allowing the individual to have emotional space is so hard for family members because family members just want the person to be okay. And they want to see the person doing the things that they're used to them doing, whether that be eating or walking, engaging in social activities.

For family members, it's important to be aware of one's own anxiety and fears and try to manage those as difficult as that may be. There's definitely a line between encouragement and pressure and judgment, I think.

Host: Yeah, pressure. I'm sure cancer patients feel that. Like you said, people just want you to be yourself. Kerri, at what point can you consider yourself a cancer survivor?

Kerri Susco, LISW-CP: This is a hot topic. Our definition of cancer survivor is from the day of diagnosis forward through treatment and beyond, as long as individuals are still here on earth. So I say it's a hot topic because certainly, unfortunately, individuals do die from cancer. In my mind, it doesn't make them any less of a survivor because they survived whatever amount of time they were here.

Host: Okay. And, Gina, what does survivorship mean, and what does that stage of the journey look like?

Gina Franco, NP: So again, people have varied definitions of survivorship and some people think that it's after treatment and as Kerri said, we consider people survivors from the day of diagnosis on. So survivorship is really meaning you've been diagnosed with a cancer and you don't even have to be called a survivor if you don't like that word, you can be called a warrior.

 It's not a term that you feel like you have to fit into, it's just the term that we use for anyone that's been diagnosed with a cancer and thereafter. And even when you're done with your treatment, you're still a cancer survivor. We have lifetime clinics for patients here after three to five years of a curative cancer, but we still call them a cancer survivor.

It's really just a term and a phrase that we use after someone's been diagnosed.

Host: Gina, after cancer treatment, how do most cancer patients feel? What are their main physical issues and how long do they last?

Gina Franco, NP: So the main physical complaint that people have after treatment is fatigue, and even during treatment. So that's why I had said earlier that the important thing is to not stop moving or lose the physical shape that you are already in. Because it's very easy to stay and become a little bit more dormant, if you feel weak.

But that is certainly one of the physical pieces that you may, symptoms that you may feel afterwards. And some people may even feel some fogginess, some difficulty sleeping. You're getting a lot of drugs, some of them stimulants. it is hard to say exactly how each person will feel because the treatments are so varied and the side effect profiles are so varied. But certainly fatigue is something that most patients have at some level during their treatment.

Host: And Kerri, how do you manage the fear of cancer returning? Because I'm sure it's always in the back of your mind or top of your mind. Do you have suggestions for how to manage the number one emotional concern, which is fear of recurrence?

Kerri Susco, LISW-CP: Yes. I want to just say that you're absolutely correct that universally, regardless of treatment or stage, individuals have thoughts of recurrence, certainly to varying degrees depending on how much fear or anxiety the person may generally have. One can't control thoughts coming in, but there are certainly ways to minimize the frequency and length of time that one stays with a thought.

So incorporating mindfulness based techniques or other anti-anxiety techniques that can help reel you back to the present moment seems to be really crucial in managing fear of recurrence. Things like reality checking and focusing on what is in your control are really helpful. In fact, it's probably really important for individuals to pause and really think about what they are in control of because so many people when they get a cancer diagnosis feel like everything is out of their control and they don't have any control whatsoever.

Also acknowledging that there's an impermanence to everything, meaning that things are constantly changing and that includes situations, pain, emotions, really being able to acknowledge that, can help one move forward. And certainly allowing self to go through the grieving process is vitally important.

Host: I would think that rollercoaster aspect would be so stressful because not only do you not know what's coming or you don't know what to expect, but like you said, everyone's different and it's constantly changing. And for people who aren't good with change, I can't even imagine.

Gina Franco, NP: A lot of times survivors, they don't have blinders on, so they can see what's around them, and often people that might have had treatment at the same time as them or similar diseases that might be elsewhere in the country, they may not be doing as well or have a different symptom or a recurrence.

So, I also want to say that survivorship guilt is real, too. So you could be doing really, really well, but someone you know is not doing well. And so it's often important to deal with those emotions as well, because you feel bad because you're doing so well, because you've seen someone else having so much difficulty.

And it's important to talk about that, to own those emotions and to know that that's not an uncommon emotion that survivors may have.

Host: And is it common to struggle with depression and or anxiety after a cancer diagnosis? When is it appropriate to reach out to a doctor for help? And how do you go about doing that?

Kerri Susco, LISW-CP: Well, the answer is absolutely. It is common. I would say more so than not, especially the anxiety part of it. We, as human beings, have some level of anxiety to begin with, and something this impactful, huge, overwhelming, certainly exacerbates anxiety. It's important to reach out as soon as you possibly can.

 I hesitate when I say that because there certainly are still stigmas around reaching out for help around that. Which makes it so important to know that universally after a diagnosis, most everyone feels some level of those emotions.

Gina Franco, NP: I would like to add too a lot of times when people finish treatment, their families, everybody's released them. They might not come back to see the physician or, team the oncology team for six months,sometimes even longer, and so, there's this expectation that they can just jump back in life. And that's hard to do because their bodies, although they may look like they're getting better and they've improved from their treatment, they certainly may not feel that way emotionally or even physically, even though they look better physically.

And we do call that the new normal. But that new normal is a fair amount of emotions and, different physical symptoms in active treatment. And so it's important to understand that that new normal is often pretty stressful. The second most stressful time of a patient's cancer care, assuming they have curative cancer, the first one being at diagnosis; is when treatment ends.

Because they're not going to see their medical team as often. And so there's a fair amount of anxiety about just jumping back to work, to family. And then often they don't just, their body is just not the same. And so they're having to deal with the limitations and some of the long term things that might have happened during that treatment. So, that's another reason to actually talk to someone to deal with those emotions because it's a, although you might look like you're doing fine you might still need some help there.

Host: Right. And it sounds like you're both suggesting not waiting too long, like, don't hesitate. Just get in there and ask for help. That's what it's there for. Do either of you have any suggestions for getting assistance for their management?

Gina Franco, NP: Absolutely. So if you're a patient here at PRISMA Health Cancer Institute, we have a whole multidisciplinary team that can help you. We have what we call a survivorship visit or an IOS visit that you can have at any time and you can have that in-person or virtual and we can discuss whatever barrier or difficulty you may be having and then really how to help you solve that.

So that we just again, you're not an island. We hope people are not an island. You do better if you do use the support that's available and then work through whatever that barrier may be. Kerri, do you have some more suggestions?

Kerri Susco, LISW-CP: Yeah, I'll just add that the cancer support community does provide a number of different types of programs to assist in having the best life possible with whatever limitations or concerns you have. And that includes support groups, healthy living classes, educational workshops, and social events. And the cancer support community is open to anyone in the community, not only PRISMA patients.

Host: Well, it certainly sounds like PRISMA has all the bases covered and I would think a patient there would feel like they were in very good hands and all their needs would be met. So thank you both so much for giving us so much useful information on a very sensitive and emotional topic.

Gina Franco, NP: Thank you.

Kerri Susco, LISW-CP: Thanks, Maggie.

Host: Thank you. Again, that's Gina Franco and Kerri Susco. To find out more, please visit prismahealth.org/flourish. And if you found this podcast helpful, please share it on your social channels and check out our entire podcast library for topics of interest to you. I'm Maggie McKay. Thank you for listening to Flourish, a podcast from PRISMA Health.