Transcript of “The Lifeline Every Bladder Cancer Patient Needs”

September 25, 2024

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Voice over:

This is Bladder Cancer Matters, the podcast for bladder cancer patients, caregivers, advocates, and medical and research professionals. It’s brought to you by the Bladder Cancer Advocacy Network, otherwise known as BCAN. BCAN works to increase public awareness about bladder cancer, advances bladder cancer research, and provides educational and support services for bladder cancer patients and their loved ones. To learn more, please visit bcan.org.

Rick Bangs:

Hi, I’m Rick Bangs, the host of Bladder Cancer Matters, a podcast for, by, and about the bladder cancer community. I’m also a survivor of muscle-invasive bladder cancer, the proud owner of a 2006 model year neobladder, and a patient advocate supporting cancer research at the Bladder Cancer Advocacy Network, or as many call it, BCAN, producers of this podcast.

I’m pleased to welcome today’s guest, Sarah Paul. Sarah is the Senior Director of Social Work at CancerCare, the leading national nonprofit organization dedicated to providing free professional support services to anyone affected by cancer, and as of January 2023, a BCAN partner. Sarah started at CancerCare in 2013 as a second year master’s student. After graduating with her master’s of social work in May 2014, Sarah was hired as an oncology social worker at CancerCare. Since then, she has overseen the development of the children, adolescent, and young adult programs at CancerCare, along with their clinical support services, virtual education workshops and Cancer Out Loud, the CancerCare podcast.

Sarah, thanks for joining me today.

Sarah Paul:

Thank you so much for having me, Rick. It’s great to be here.

Rick Bangs:

It’s our pleasure. So I know from a couple of the long-term BCAN patient advocates that CancerCare has been around for a while, and these BCAN patient advocates actually met as a result of CancerCare. So people may not be familiar with CancerCare. So what does CancerCare do?

Sarah Paul:

So CancerCare is a national nonprofit organization that provides free professional support services to anyone affected by cancer, and that’s patients, caregivers, family members, and also the bereaved. Our core services include counseling, support groups, educational workshops, publications and financial assistance. We aim to address the emotional, practical, and financial challenges that come with a cancer diagnosis. All of our services are free and confidential and facilitated by licensed oncology social workers and resource navigators.

Rick Bangs:

That’s such a great, wonderful comprehensive scope, and confidential and free, and those are two keywords, so that’s wonderful. So who do you help and have you always provided these free services to your callers and your users?

Sarah Paul:

So yes, CancerCare has always provided free services since our inception back in 1944. And in terms of who we help, we support everyone, not only just patients, but also their families and caregivers and those who have lost a loved one to cancer. So whether someone is newly diagnosed, in treatment or navigating survivorship, we’re offering services tailored to meet their unique needs. And for those facing loss, we provide comprehensive bereavement counseling and support groups as well.

Rick Bangs:

So you mentioned CancerCare was started in 1944, so that’s around 80 years, and I think a lot of people would be surprised because that’s very early in cancer advocacy kind of work. So what are some of the key milestones in CancerCare’s history?

Sarah Paul:

You’re right, 80 years this year. We were founded in 1944, and we have grown significantly since then. So taking you back to the 1950s, that’s when our social service division and counseling support program was developed, which really paved the way for recognizing how important emotional and mental health is throughout the cancer experience. Then in the sixties, we introduced our financial assistance programs to help people with cancer cover some of the costs that are associated with treatment like transportation, child care, home care, and household bills. And then moving into the nineties, we had the first workshop of its kind called our Connect Education Workshops, which happened all over the phone, and these were our first national educational workshops that we offered.

And then some other key milestones include, of course, the launching of Cancer Out Loud, which was CancerCare’s Podcast back in 2020. And then up to in 2023, partnering with organizations, like BCAN, to address the specific needs of different cancer communities. And really our evolution over the decades has always been driven by one key goal, to ensure that people affected by cancer are receiving the support that they need wherever they are no matter their circumstances. So we’re really proud of how far we’ve come and excited to continue growing in ways that best serve the cancer community.

Rick Bangs:

A lot of cutting-edge things that you’ve done over the years. I mean, this is really very, very impressive. So I was really excited to hear about the CancerCare partnership because there’s such a significant need in the bladder cancer community for this kind of work, and I want to talk about the BCAN partnership. So as a member of the bladder cancer community, where might you help me?

Sarah Paul:

So our partnership with BCAN really allows us to extend the specialized support to the bladder cancer community. So through this really, really great collaboration, we’re able to provide emotional support, some limited financial assistance and resource navigation to patients, families, and caregivers affected by bladder cancer. And this also includes supporting those who have lost a loved one to bladder cancer in the last 18 months. This partnership also allows us to refer back to BCAN’s programs, like their survivor to survivor support, really ensuring that patients have access to a broad range of services that are really specific to what their needs are.

Rick Bangs:

Okay, so how would someone connect with you and trigger this BCAN partnership?

Sarah Paul:

It’s really easy, which is great. Patients, caregivers, or loved ones can call the dedicated bladder cancer helpline, which is 833-ASK-4BCA, or 833-275-4222. And this helpline is staffed by our licensed oncology social workers at CancerCare who can then offer emotional support and practical guidance, along with free educational publications, our resource navigation services and referrals to online workshops and webinars that provide up-to-date cancer-related information. In terms of when you can reach us, we’re available Monday through Thursday from 10:00 A.M. to 6:00 P.M., that’s Eastern Time, and on Fridays from 10:00 A.M. to 5:00 P.M.

Rick Bangs:

Okay, so if I reach out and make this call, what can I expect during the call, and what are some typical topics that you’re hearing from bladder cancer survivors?

Sarah Paul:

So when someone calls, it really depends on what their needs are, but in terms of what happens when they call, they’ll speak with a licensed oncology social worker who’s going to start off that call by assessing their emotional and practical needs. Some of the common topics that we hear about include coping emotionally with a bladder cancer diagnosis, navigating treatment options and communicating with healthcare providers, which is a big one, financial concerns, and of course managing the stress of caregiving. And then as I mentioned before, we also help with bereavement counseling for those that have lost a loved one.

It’s really important to understand that this helpline provides psychosocial and practical support. So for questions regarding specific cancer treatments or medical procedures and surgeries, we try to refer those callers back to their medical team since every person has individualized needs when it comes to treatment options.

Rick Bangs:

Yeah, that’s definitely true. Okay, and so bladder cancer has the highest cost per patient lifetime of any cancer, and I was absolutely thrilled to see that you provide financial assistance, which you say you’ve been providing since 1960, which is really cutting edge, as I mentioned earlier. So can you talk to me about how the limited financial assistance works and who might qualify?

Sarah Paul:

Absolutely. So in general, our financial assistance programs are geared to help patients with costs, like I had said before, transportation to treatment, home care, and child care. So when someone calls the helpline and the helpline here, we assess each caller’s situation to determine eligibility for our financial assistance program. So if someone is eligible, and that depends usually on a couple of different factors like what their diagnosis is, if they’re an active treatment, what state they’re currently residing in, and income guidelines, we then guide them through the application process, and we also refer them to other resources that can offer additional financial support on top of what they’re asking for.

The cool thing about this right now is that CancerCare is offering a bladder cancer transportation program specifically for those diagnosed with bladder cancer to help pay for transportation-related costs like gas and taxis, Uber or Lyft, or even public transportation and tolls. So financial assistance at CancerCare is available on a first-come, first-served basis. And like I mentioned, it does depend on income guidelines, so it’s important to reach out to the helpline to speak with a social worker first to see if you are going to qualify.

Rick Bangs:

This is absolutely terrific. All right, so what happens if the caller asks a question that can’t be answered?

Sarah Paul:

This happens. It’s a great question. It’s a great question, and sometimes we’re not going to have the answer, and we don’t have an issue with saying that because it’s impossible to have an answer for every single question. But we work really, really hard to find the information or refer whoever is calling to another organization that might be able to either answer their question or better address their needs. Really one of our goals of our helpline and our hope line is to make sure that no one is left without support, and sometimes it’s just that listening ear being there in that moment that makes all the difference.

We have seen since the pandemic many changes in the nonprofit cancer space, which has left limited resources and limited financial assistance options for patients. So we see these limitations not only show up in the financial assistance space, but also limitations to support services. For example, at CancerCare, while we do offer individual counseling and support groups, it is restricted to residents of New York and New Jersey due to social work licensing restrictions. And so for example, if someone did reach out and they were looking for counseling and they lived let’s say in Maryland or North Carolina, our social worker is going to work really hard to find either local social service agencies to provide free support or help them empower them using either their health insurance or other options to find that emotional support because we know that we aren’t able to help in that case.

So basically to answer your question, if we can’t find the answer, we will do our best to find it somewhere else or connect the caller with resources to help meet their needs.

Rick Bangs:

Excellent, excellent. So you’ve got a network that you can leverage and you don’t get into areas where you don’t know the answer, so I think that’s important. I think people appreciate that. Okay, so January 2023, BCAN partnership launches, so tell us are there lessons learned or surprises?

Sarah Paul:

I think that one thing that has really stood out about this partnership is just the importance of specialized support. And I know I’ve said this already, but I really want to hone in on this because we know that bladder cancer patients have unique concerns, particularly related to the physical and the emotional toll of the disease. So it’s been really eye-opening to see the specific needs that are showing up within this community and how valuable it is to have a dedicated support network like BCAN.

And since our partnership started, we’re looking at the stats, we’re looking at our reports, and we’ve seen that many people are, first and foremost, reaching out for financial assistance, whether that’s guidance on resources or applying for financial assistance or looking to meet the needs of whether that be transportation or co-pays or other related costs to treatment. About 40% of callers are looking for financial assistance.

Rick Bangs:

Wow.

Sarah Paul:

It is. It’s significant compared to those that are reaching out for specifically for medical questions, which is about 25%. And then another 20% are looking for that specific emotional and psychosocial support. And I think again, this is going to ebb and flow with the different time of year. We see people struggling more with emotional support around the holidays, struggling with isolation and feeling really alone.

But another really interesting insight is looking at the demographics of those that reach out to the helpline. And it’s not so surprising understanding the makeup of bladder cancer patients, but about 45% of those that call are male. And so it’s interesting because those callers, they’re typically seeking information either related to financial concerns or even medical concerns. And the great thing about being partnered with CancerCare is maybe they didn’t call us for emotional support first, but in that conversation we are talking about the importance of having support, where to get that support, and how to ask for support. And so we really provide these wraparound services that are meeting needs that maybe patients didn’t even understand that they had.

And so it’s been just an amazing trajectory to witness the growth of this partnership and to see how many people we can help that have been affected by bladder cancer and really giving them the support that they need.

Rick Bangs:

Yeah, I think it’s really great that you have 45%. I mean, there’s 75% of bladder cancer survivors are male, but males tend to be a little more reluctant to reach out. And I’m really glad that you have this support and you’re getting 45% because I think that’s relatively high, and hopefully some of our male listeners will feel less reluctant calling because you’ve got some great, great services that you provide here.

So I was excited to hear that you have had a CancerCare podcast since 2020, and I think people would be interested in hearing about the topics you’ve covered that might be of interest to the bladder cancer community.

Sarah Paul:

So yes, we did start the podcast in 2020 right before the pandemic. That was not planned at all. And over the last four years, we’ve covered a wide range of topics that would really be of interest to anyone facing a cancer diagnosis. We focus on topics like coping with treatment side effects, managing the emotional impacts, like anxiety and depression, navigating changing family dynamics. And we’ve also had episodes focused on cancer survivorship, which is a topic that can be especially relevant to bladder cancer patients as they navigate their life post-treatment.

But the big takeaway from the podcast is that we tell all sorts of stories. We focus on not only patients but caregivers and people that have also lost loved ones. And so sometimes even if you’re looking for an episode that is speaking to bladder cancer specifically, you might find messages that resonate from listening to other episodes about survivorship. Because what we’re really trying to do is just elevate the cancer story and really reduce feelings of isolation by allowing others to listen in to these very vulnerable moments in people’s lives and understand that they’re really not alone in their experience, even if they feel like they are.

So for those listening, I really encourage you to peruse our episode list. We have about 66 episodes out from the start of our podcast to see which one might interest you the most.

Rick Bangs:

Excellent, excellent. So now what’s in the future for this BCAN partnership and for CancerCare itself?

Sarah Paul:

So we’re excited to grow. I think that looking ahead we really plan to expand some of our educational offerings for the bladder cancer community and continue to explore other partnership opportunities that would allow us to grow our services. I think that we’re really focused on seeking new ways to reach more patients and caregivers, whether that be through virtual workshops, financial assistance programs or other emotional support programs. And then of course, through things like sharing this experience on the podcast as well. So I’m hoping that this is not the last time we have a conversation.

Rick Bangs:

I’m hoping so too. And I’m going to be sitting on the sidelines listening for new things that you’re going to be working on either independently or together with BCAN because I think you’ve just got this amazing offering.

Okay, so any final thoughts you want to provide?

Sarah Paul:

I think the overall callers that are reaching out to us, they really want a place that they can find verified bladder cancer information. And the partnership that CancerCare and BCAN offers makes callers aware that there is a safe place for them to get this information, that they can use BCAN resources that really don’t compare to others, that really go above and beyond of what other organizations are offering and get connected to programs like the Survivor to Survivor program and the other wonderful programming that’s being offered alongside CancerCare’s programs and services. So I really think it’s just a unique opportunity to get as much support as possible.

And I also just want to remind everyone listening that you don’t have to go through cancer alone. Whether you’re a patient, a caregiver, a professional in this space, or someone that’s lost a loved one, CancerCare and BCAN is here to support you, and we’re just a phone call away.

Rick Bangs:

Excellent point, excellent point. Sarah, I want to thank you for providing an overview of CancerCare and the free services available as part of the BCAN CancerCare partnership.

If you’d like more information on bladder cancer, please visit the BCAN website, www.bcan.org. Now, if you want to contact the BCAN Helpline, which is managed by CancerCare, dial 833-ASK-4BCA, and that translates to 833-275-4222. As mentioned, the helpline is free. It’s available Monday through Thursday, 10:00 to 6:00 P.M. Eastern Time, and Friday 10:00 to 5:00 P.M. Eastern. For more information about CancerCare or BCAN, visit www.cancercare.org or www.bcan.org.

In case people would like to get in touch with you, could you share your email and how to access your podcast?

Sarah Paul:

Absolutely. People can reach out to me via email is spaul, P, as in Peter, A-U-L, as in Larry, @cancercare.org. And then to listen to the podcast Cancer Out Loud, it’s streaming on all major platforms, including Spotify and Apple Podcasts, or you could visit cancercare.org/canceroutloud to also listen to all episodes on the CancerCare website.

Rick Bangs:

Excellent. Just a reminder, if you’d like more information about bladder cancer, you can contact the Bladder Cancer Advocacy Network at 1-888-901-2226. That’s all the time we have today. Be sure to like, comment, and subscribe to this podcast so we have your feedback. Thank you for listening, and we’ll be back soon with another interesting episode of Bladder Cancer Matters. Thanks again, Sarah.

Sarah Paul:

Thanks for having me.

Voice over:

Thank you for listening to Bladder Cancer Matters, a podcast by the Bladder Cancer Advocacy Network, or BCAN. BCAN works to increase public awareness about bladder cancer, advance bladder cancer research, and provide educational and support services for bladder cancer patients. For more information about this podcast and additional information about bladder cancer, please visit bcan.org.