Transcription of Susan Clifford for the show Art & The American Cancer Society, #94
Lisa: Cancer is a diagnosis that impacts all of us and because this is so we’re fortunate to have people like Sue Clifford and Cheryl Tucker from the Maine Chapter of the American Cancer Society to help us on our journey. Sue and Cheryl thanks for coming in and talking to us today about the work that the Maine Chapter of the American Cancer Society is doing.
Cheryl: Thank you for having us.
Sue: Thank you.
Lisa: Like most people who are listening I’ve had cancer in my family, in my grandmother, my grandfather and it’s something that it’s become so commonplace that sometimes we forget the detection. Still a very serious thing but doesn’t always get cured. It requires support. This is what it sounds like the Maine Chapter of the American Cancer Society is out there trying to do.
Cheryl: Cancer is a chronic illness we have over 9,100 people we expect to be diagnosed in Maine this year. That’s a pretty high number but we do have about 75,000 Mainers that are living with a history of cancer so to a point yeah there are a lot people that do need support and look for support from the American Cancer Society for their journey.
Sue: We’re really trying to approach it on a couple of different levels. One is by getting a lot of messages out about prevention and early detection and the importance of catching your cancer early so that you can be a survivor and not a statistic. Then we also have our programs and services to help people who are currently battling the disease to make their life more comfortable. They don’t have to worry about where somebody might be that could give them a ride to their appointment because their families have to work.
They can’t take time off from work. A lot of times the medication cancer patients are taking it says on the bottle do not drive while taking this medication. How are you supposed to get to your treatment appointments without things like support from the American Cancer Society?
Lisa: It seems to me as though there has been an increase and I think that this is true from my medical training I could say, an increase in cancer cases over the last 100 years. Is this true with the state of Maine as well as nationally and internationally?
Sue: Yeah absolutely part of it is because cancer tends to be a disease that strikes people later in life. It doesn’t always of course but the statistics prove that as you age there are more things that you, your heart disease risks increase, your cancer risk increases, your diabetes risk increases. Maine unfortunately has an aging population. It’s considered one of the oldest states in the United States so that’s one reason why instead of heart disease being the number one cause of death in Maine it is cancer instead.
Lisa: That’s unusual?
Sue: It is unusual.
Lisa: What are some of the top cancers that Maine people fall victim too?
Cheryl: Lung cancer is the number one cancer in Maine. However then for women breast cancer and for men prostate cancer and then of course colon cancer is the third and then melanoma.
Sue: Those are the top cancers really that people should be most concerned about getting screened for. Women should get annual mammograms. Men should talk to their doctors about what tests might be right for them for prostate cancer. Certainly melanoma is one where you should always check your body when you take a shower and look for any changes in your skin. Of course lung cancer it can be avoided if you watch your smoking and tobacco products and other things from …
Cheryl: Actually it’s interesting in Maine we actually have a high rate of melanoma and that’s surprising. You would think in a state ours where we don’t get outside as much but thinking about some of our industries fishermen and who are in the coast, outdoor recreation activities that we do have a rather high rate so it’s something we really need to think about.
Sue: Skiing in winter, you should always wear sunscreen even in the winter.
Lisa: Perhaps it’s because we live in a state like Maine where don’t have as much consistent sunlight that we aren’t as good about putting sunscreen on. When we get out there we really want to enjoy that sun so we’re aren’t quite as good about protecting ourselves.
Sue: Absolutely and a lot of the jobs in Maine are based outdoors. We’re an active state. We have a lot of outdoor things that people enjoy doing.
Lisa: Has there been any relationship noted between some of the industries and certain types of cancers in the state? Some of the mills, paper mills some of the harm environmentally?
Sue: That’s something that we currently have a lot of research going on about. The American Cancer Society is one of the largest funders of cancer researches and non‑governmental funder research. They do look at a lot of different things. They look at naturally occurring radon in a state like Maine where we live on granite ledge and then they also look at the industrial products that are long-term state over the years. That’s long-term research studies and I don’t think we’re able to do any conclusive evidence about that yet but certainly something that people should be aware of to always try to eliminate your exposure to any types of chemicals even household products. I would also just add that if someone has a particular concern about say radon or asbestos we have a lot of great information on our website where someone can actually go to cancer.org and go the search bar and put that in and see what does the American Cancer Society have to say about that particular thing.
Lisa: One of the things that people have expressed to me over time is that with all of the information that’s out there it’s hard to know which information is well researched. What sources it comes from? Is this one way in which the American Cancer Society can be helpful to people?
Sue: Absolutely, not only because we have been rated by other people that are not associated with us. If you can be assured that it’s … We’re top rated for all of our information for the cancer research that we do. Forty six of our 100 researchers how gone on to win Nobel prizes for their work. We don’t necessarily rate other cancer organizations but we can take what they are using for messages and ours is science and evidence based and if theirs is not then it would be something that we would probably not recommend for someone.
Cheryl: Just adding to that basically if you call our 800 number or look at our website and have a question related to cancer in any way it won’t be on our website or available for information unless it’s been tried in truth, studied and researched. We are very much a data driven organization.
Lisa: Science and evidence based. What are the some of the similarities and differences between the American Cancer Society and some of the more cancer‑specific organizations say organizations that are working with breast cancer or prostate cancer? How do you …
Sue: I don’t think there are a lot of differences. We’re all working towards the same goal of eliminating cancer or at least reducing its harsh effects on people’s quality of life. We do all partner and work together a lot of times.
Lisa: One of the cancers that I’m reading about here, you gave me this when you came in. You gave me the cancer facts and figures for 2013 with a special section on pancreatic cancer. Why is this something that the American Cancer Society decided to focus on?
Sue: We really had seen an increase in number of diagnoses for pancreatic cancer in the last few years and so it has risen to the top. It’s something that people are becoming more and more concerned about.
Cheryl: Well and pancreatic cancer is a cancer that when diagnosed often times it’s a diagnoses late into the cancer because it’s hard to screen for that. There’s a lot … Unfortunately many people don’t survive beyond five years with this diagnosis so obviously there’s a lot we can still learn.
Sue: Yes both of us have been touched by people in our families who have died of pancreatic cancer so we understand why the heightened interest in it because we’re very interested in it ourselves.
Lisa: I’ve treated patients with pancreatic cancer and it is striking how, yes how late it’s diagnosed and how quickly it progresses and how painful and debilitating, I think most cancers have some pain and debilitation associated with them but pancreatic cancer is really one of the bigger challenges I think when it comes to cancer these days.
Sue: Absolutely and really some of the success cases have been people who have been diagnosed with some problem with another internal organ and the doctors can find the pancreatic cancer at a very early stage while they’re in that body cavity. There’s no way that you can x-ray that deep into the body looking for tumors and that sort of thing. It’s really trying to determine if they can come up with a blood test that might have an enzyme in it that might point to some sort of thing. Those are the types of research that we’re looking at now for this type of disease.
Cheryl: I think just speaking to as Sue alluded to earlier on we both have a personal experience with pancreatic cancer in our families, I am very happy to see that cancer facts and figures is focusing on that because we often do hear about the top five cancers. It’s nice to see what’s going on in other cancers.
Lisa: The American Cancer Society as you said funds research really nationally and probably internationally and one of those research sites is right here on Maine.
Sue: Yes we actually have a funded researcher at the Jackson Laboratory in Bar Harbor. She had a $720,000 grant over four years that was to study stem cells in the treatment of brain tumors.
Lisa: Very fascinating in emerging science. So you have research. It sounds like you do outreach and you’ve alluded to some of the support that you offer cancer patients and their families. Tell me a little bit about that.
Cheryl: The first that I would like to talk about when asked that question is our transportation program. We know certainly in a state like Maine we have a large geography. We have a lot of world communities and we have worked with a lot of wonderful volunteers throughout the state that offer transportation for cancer patients going to their medical treatment appointments Monday through Friday during the day. They’ll pick them up at their home, bring them to the cancer center and bring them back home free of charge.
Lisa: Free of charge.
Cheryl: In that program what we tell the volunteers that work on that program, everyone makes an incredible difference, one person makes a huge difference.
Sue: They often make lifelong friendships because a lot of reasons that these volunteers are attracted to be a driver for the program is because cancer has touched their family in some way or even themselves personally. They make lifelong friendships with these people that they drive to their appointments. Very comforting because patients can’t always talk to their families about how they’re feeling so having a person that they don’t really know that well who may have some sort of cancer experience that they can share and talk about is good for them, not only for being able to get them to the treatment appointments but also psychosocially it’s a big help.
Cheryl: Also talking about transportation we partner with the Amtrak Downeaster to offer a Cancer Care Fare for folks from Maine to travel to Boston for care. There’s a reduced train fare available for them. Actually any of the resources that we kind of are talking about, folks can call our 800 number 800-227-2345 to find out information and how to sign up for the program. They all offer you like I said with the exception of the Cancer Care Fare, it’s is a reduced fare.
Sue: We have patient navigators.
Cheryl: We have been partners with two hospitals in Maine, Maine General and Maine Medical Center. Patient navigators are available to work with cancer patients in the treatment center on finding resources that they may need to get through their cancer journey.
Sue: It doesn’t necessarily mean resources related to the treatment. It can be related to “How can I obtain general assistance from my community to help me pay my bills while I’m going through cancer treatment?” or “I’m having difficulty with my insurance company. Can you help me untangle the web of bills?” and “How can I talk to my …” It’s non medical advice that these patient navigators offer but it’s so critical to helping a patient heal both emotionally and mentally.
Cheryl: They also talk to the caregivers which is also very important. We have a caregiver pilot that we actually offer you in a number of facilities in Maine where it’s just a finder of resource information but I’ll tell you it is, it is such valuable information because often times the caregiver doesn’t recognize what they might need. We try to work with them as well.
Lisa: There are other things that you have available to help people with their healing process including your TLC, tender loving care catalogue of products that have to do with hair loss and mastectomies. Also your Look Good, Feel Better program that has to do with hair loss and skin changes and helping with that. Your support groups have reached a recovery man to man for prostate cancer.
I can cope for families just I feel like we could spend a lot of time talking about all of these different programs. It’s something that requires funding. How do you make the money that you need to support all of these programs to bring cancer support to patients and their families?
Sue: We actually have two signature events that happen in Maine. One is called Relay for Life that’s a team event where people come together and form teams that raise money. It’s an overnight event. It’s like a slumber party or a camp out however you want to think of it where they gather usually at local colleges or high schools on the track. In field they set up their tents and they have tent judging contests and those sorts of thing. Then a member of the team is asked to have one person on the track at all times and they’re usually anywhere between 12 and 18 hours in length.
The reason it’s an overnight event is cancer doesn’t sleep and so neither do these people. A couple of special parts of one of the Relay For Life is the beginning laugh which is to recognize cancer survivors and caregivers. They kick off the event with a laugh that is totally to honor them. People just line the track and applaud and encourage them on their walk around the track.
Then in the evening around 10 PM they have what’s called Luminaria ceremony. Luminaria is a paperbag with sand with a candle in it and people decorate it in honor of someone who survived cancer or in memory of someone who’s lost their battle and all their names are read and everyone walks by candlelight during that part of the evening. That raised $1.6 million for the American Cancer Society in Maine last year and then we have our Making Strides Against Breast Cancer Walk.
Cheryl: Making Strides Against Breast Cancer Walk it’s a three mile non-competitive walk and we are looking forward to the event in October. It raises money specifically for breast cancer research and programs and we typically have a couple of 1000 people that participate. It’s great day and a usually nice sunny day we hope in October.
Sue: People say why do we have breast cancer only walks why don’t we have a prostate walk or why don’t we have a pancreatic cancer walk. It’s because breast cancer research has led to discoveries that will help at least 17 other types of cancer. It’s not that we’re necessarily focusing just on that disease. It’s just that what you learn from one type of disease can translate into cures for other types of disease. I think it’s important for people to realize that.
Lisa: How can people find out about the American Cancer Society?
Sue: Well certainly we have a wonderful website. Its cancer.org. It’s available to 24/7 and you can go on at any time and it has great headers where you can choose where you want to go to learn more about research or to learn more about support programs or how you can help us raise money. Sally found a place there on the website where if you want to publish or have us publish a book, you can submit your ideas for that.
It’s an amazing website and then we also have our 800 number which is 800‑227-2345 and that also is the only cancer helpline number of it’s type in the world where we have live operators there 24/7. The most frequent time when people call are actually somewhere between midnight and 3 AM when they can’t sleep and their tossing and turning. They don’t want to wake up their family member to say, “Hey I’m having trouble sleeping,” so they just call these friendly voices and get the support they need.
Lisa: Well I’m very pleased that you’ve brought your own friendly voices in for our listeners to hear today and talked to us about all the great work that the Maine Chapter of the American Cancer Society and also the American Cancer Society nationally is doing. We’ve been speaking with Cheryl Tucker and Sue Clifford of the Maine Chapter of the American Cancer Society and I really encourage anyone who is interested in learning more to go to cancer.org or to call the 1‑800-227-2345 number to learn more about the types of things that are available to help support cancer patients and their families.
Cheryl: Thank you for having us today.
Sue: Thank you.