ACS Best Practices: Survivor and Caregiver Engagement Oct 26 Guest Blog by Breanne Spear and Nicole Kelly of Albany College of Pharmacy and Health Sciences   Survivor and Caregiver Engagement

By Jake Konigsberg

Every February is dedicated to raising support and resources for the fight against gallbladder cancer. If not caught early, gallbladder cancer becomes extremely deadly with the average five year survival rate being only 19%. However, if caught early through screening and awareness, the survival rate becomes 65%, meaning if you know what to look for, it will make a huge difference when challenged with gallbladder cancer. This form of cancer within the gallbladder often results in the organ swelling and blocking the bile ducts.

How can we diagnose it early?

There are currently no tests or examinations that can catch gallbladder cancer early and reliably enough to be considered screenings. As a result, there are no designated tests to determine if one has gallbladder cancer; however, if one is to show any symptoms or signs of such a cancer, there are many available testing options for them.

Warning Signs:

• Abdominal pain

• Abdominal bloating

• Weight loss

• Jaundice (yellowing of the skin and whites of the eyes)

Common tests:

• Lab tests to determine the amount of bilirubin in the bloodstream, which is a chemical that causes jaundice

• Higher levels of gallbladder tumor markers (substances made by cancer cells) such as CEA and CA 19-9

• Computer tomography (CT) scan which uses x-rays to make a detailed cross section of the body and can find tumors in the abdominal area and even stage those tumors

• To learn more about these tests and other tests often associated with gallbladder cancer, click here.

How can you reduce your chances of getting gallbladder cancer?

While symptoms usually appear late in the progression of gallbladder cancer, one can look for the common symptoms referred to above as an indication of this diagnosis. The most common symptoms to look for include abdominal (belly) pain, nausea, vomiting, and jaundice. By catching the disease early, one will hopefully be able to limit the spread and progression of the cancer providing them with the best chance of survival. To learn more about the symptoms and signs of gallbladder cancer, click here.

If one has any symptoms or signs of gallbladder cancer, doctors will often check a patient’s medical history to determine any risk factors that they might have. Additionally, to determine if one does have gallbladder cancer, doctors will often run tests including liver and gallbladder functionality, biopsies, ultrasounds, and CT scans. To learn more about the various tests, their effects, and when they are used, click here.

If one thinks they may have gallbladder cancer, it is important to ask the right questions to their doctors. One must be open, honest, and thorough in discussing information with their cancer care team. Having productive discussions with one’s medical staff will enable the staff to provide the most accurate prognosis. Catching gallbladder cancer early enough could ultimately be lifesaving. Luckily, the American Cancer Society has compiled many questions that you should ask your doctors, including: 

• Has my cancer spread beyond the gallbladder? 

• What should I do to be ready for treatment? 

• How will treatment affect my daily activities? 

How can you get involved?

• Donate to the American Cancer Society to help fund gallbladder cancer research and ensure the accessibility of easily digestible information about gallbladder cancer

• Attend the cholangiocarcinoma conference or interact with its virtual resources to become well versed in gallbladder related cancers as cholangiocarcinoma is a cancer specifically linked to the bile duct often related to gallbladder cancer

For other opportunities, www.cancer.org/involved has many ways to get involved

With many recent staff changes occurring at many levels of ACS leadership,
we wanted to provide some tips and suggestions on how to navigate these
staff partner changes in a positive way to establish a great relationship
and make your ACS On Campus chapter and/or campus event as great as it can
be.

Access to quality healthcare is not a privilege, but a right. The American
Cancer Society is dedicated to advancing health equity.

In order to change the narrative around cancer disparities, we must all
commit to listening, learning, and continuing the conversation.

It is volunteer appreciation week, and we here at the American Cancer Society, want to express our thanks and appreciation for all that you do to fight cancer. If it wasn’t for all of you, we wouldn’t be able to raise $3 million during the pandemic that has changed how we approach this fight. COVID-19 has changed the lives of cancer patients, and their ability to receive treatments. As a result, we have been dependent on volunteers more than in the past to provide support and resources to patients and caregivers who are walking through a challenging diagnosis during a chaotic time.  

We all know that this past year is the last thing that we all could have expected, but you all have persevered through the challenges and rallied your communities, whether that be on campus or online. The battle against cancer is a personal one, and all of our volunteers have stepped up to the challenge and exceeded any expectations that we could have had. 

We have held 31 in-person events, 65 virtual events, 35 hybrid events, and 51 events in the works.  This has been a team effort, a team of 60,000+ volunteers across the country. 

Not only did our college and high school events raise millions of dollars in the past year, we also had successful campaigns such as “Fund The Mission” and “Spring into Action Against Health Disparities”. As college and high school students, we were able to raise $174,324.65 in 72 hours for Fund the Mission which helps ensure that the American Cancer Society can provide the support and resources to patients, caregivers, and survivors that are needed. Spring into Action Against Health Disparities, which was a novel campaign, surpassed our goal and raised $65,000 in 24 hours for Diversity, Equity, and Inclusion in healthcare. Without the support and drive of our volunteers, we would not have had successful campaigns to continue the mission of ACS. 

We wanted to take the time to share the impact that all of our volunteers are making, even in the challenging time of COVID. Thank you for all the time and effort that you have put into your events and fundraising efforts. Thank you for your dedication to a mission that hits too close to home for too many individuals. Thank you for persevering and being innovative during a challenging year. Thank you. We appreciate everything you do for the American Cancer Society and wanted to take time to show our gratitude and celebrate all of you!

The American Cancer Society Cancer Action Network (ACS CAN) lobbies our
lawmakers for positive change in public health and for cancer patients’
lives.

By Alexis Velazquez

Tis the season for NCYET recruitment! That’s right, now is your chance to apply to volunteer with the National Campus Youth and Engagement Team for 2022-23. We know that this can seem like a daunting jump from serving on your campus event leadership team to the national level, but we also know that we have SO MANY incredible volunteers on high school and college campuses that are more than capable of taking the next step. Not only do we have words of encouragement, wisdom, and collaboration, but also stories of people coming together, forming bonds, and continuing the fight against cancer at their campus, on a national level, and even in a global capacity. 

What does it mean to join the NCYET?

By joining the NCYET, you are joining a community of volunteers that come together to lift each other up and make sure that the mission of ACS is shared to campuses across the nation while continuing to fundraise and engage students in the fight against cancer. We strive to ensure everyone and every campus is successful in their ACS initiatives! A perfect example is the Campus Runs the World initiative that has become an annual challenge since 2020 largely due to the leadership on this team. Jenna Capuzzo, in collaboration with other members of the team, proposed the idea of a national campus challenge that raises money as they take steps to literally run the diameter of the Earth. 

This challenge was not something that just one person could make happen, but a team of dedicated volunteers. Each and every project/campaign/initiative that this team plans is not an individual task – it is a team effort. We are saying this loud and clear so people interested in this team know that you don’t need to have every skill or ability when it comes to planning something in the nature of Campus Runs the World. If you are super passionate about logistics, graphics, or networking – that is awesome and one piece of the puzzle that is needed to make the idea a success. The team will have the rest of the pieces and will work together to put them together. 

Take the leap of faith

Okay, so we will step down from our soap box for the time being and share a little bit about how some of our members  came to be on the NCYET. Many of the members, if not all, had conversations with past and present members about their personal experiences on the team. If this is something that you are interested in, please don’t hesitate to reach out. We would all love to have a conversation about what it means to be a national volunteer, whether that be what the time commitment looks like, what our experience has been thus far, or what the application process looks like. If there is a specific role you are interested in, you can check this page for contact information for the current member if you would like to learn more about that position. 

After talking with our Global Capacity Co-Chair, Cameron Graber, we were able to learn that when he applied to be a member of the team it wasn’t the first year he had considered applying. The year before he was able to have conversations with past members about potentially joining the team. In reality, he said that he didn’t know if he was capable of being a  member of the team, but looking back four years later, we are more than grateful he took a leap of faith and applied. As a three year member of the team, Cam G. has served as the Website Chair, Co-Chair of the National Team itself, and Global Capacity Co-chair. We are asking you to take a leap of faith and apply because you never know what could happen four years from now. 

What being a part of the NCYET team means to its members

Now for the promised words of wisdom for those either on the fence about applying, or for those who are set to send in their application (and even for those who haven’t considered applying yet). 

Murphy F., the previous Mission Integration & Survivor/Caregiver Engagement Chair and the incoming Global Capacity Chair, had some good words to share for those whose biggest concern is the time commitment. 

Don’t focus on why you can’t because of time, but rather think about what you can bring to the table and how you can accomplish that. We all have busy lives outside of ACS, but nowhere else in the organization will you have this opportunity. Time as a campus volunteer is short, but you won’t be able to experience, learn, and grow from being on the team without taking the leap and sending in your application. You have invested in ACS, and ACS wanted to invest in you as a leader for their mission.

We know that between school and personal life, things can get hectic, but we would love to have an open conversation about what the time commitment looks like before you make the decision about applying. 

Caitlyn R., who is rolling into the Co-chair from the Training and Development chair, quoted Nike and said ‘Just Do It.’ 

People should not be scared based on the unknown. Know that as you are taking this step that there is an entire group of people that will have your back in every aspect. We are there for you in the good and bad times, no matter what spectrum of life you are on. The opportunity to be on this team is very humbling and a breath of fresh air. We all have each others backs and step up when others need help. We are able to lift each other up no matter where you are in your life and make a difference in the world together. 

As Caitlyn said, this team is more than professional relationships. We are there for each other to celebrate with them when things are good and to lift them up when they aren’t. This team is like a family, and we would love to grow our family even more! 

Jenna C., who is rolling off the team, but has been a crucial part of our NCYET family over the past three years, wants to share to those applying that no idea is too small. Look at where Campus Runs the World is – in its inaugural year, it raised over $25,000. That is a huge accomplishment that came from an idea and grew with the help of the team. We were able to have a brief brainstorm of initiatives while sharing advice where the sky’s the limit and here is what we came up with: 

• Relay on the Moon 

• Storm Area 51 but make it the track where Relay began 

• Cancer Fight Night with UFC 

• Law enforcement vs. firefighters in stuff the boot 

• Cops vs. robbers 

What is your out of the box (or literally out of this world) idea that can be an initiative you work on with the assistance of this team? 

We know that this is a big decision on whether or not you apply, or maybe it is for what position, but we want to leave you with the wisdom of Cameron Graber, who will be continuing his time as the Co-lead for the National Community Fundraising Leadership Team.

Be willing to break down natural barriers that you have built up. We are all in the same boat when we join this team, but it is okay to ask for help and lean on others who have a different skill set and perspective than you do. You will get close with staff and volunteers, and work with people that are natural born leaders. Learn from them. Develop yourself MORE as a leader and acknowledge the leadership skills you already have.

How YOU can become a member of the NCYET

If you have questions or would like to talk with a current member of the National Campus & Youth Engagement Team about the team or any of the available roles, please email Cameron Coates at cameron.coates@volunteer.cancer.org or Haley Huntington at haley.huntington@volunteer.cancer.org or any of the above mentioned members at our Leadership page. If you are an ACS staff member and have a question, please contact Brad Wisdom at bradley.wisdom@cancer.org.

Now is your time to take a leap and apply for the National Campus Youth and Engagement Team here!

Cervical cancer is one of the most preventable cancers. Learn more about
prevention & screening…