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According to the Recent ASCO Survey Results, What Does the American Public Really Know About Cancer?

According to the Recent ASCO Survey Results, What Does the American Public Really Know About Cancer?

What does the American public really know about cancer? According to the second annual National Cancer Opinion Survey, maybe not as much as we all might think. The survey was commissioned by the American Society of Clinical Oncology (ASCO). It was conducted by The Harris Poll this past summer, and the results may or may not be surprising to you. (There’s a reason why we need that #breastcancerrealitycheck.)

Regardless, the survey results generated some buzz, so I thought I’d share some of them in this post, in case you missed this news. It’s important for you and me, and all those directly impacted by cancer, to remind ourselves that many people do not understand as much as we might think they do about cancer.

What were the headline-making results?

I’ll address the main ones reported on and offer a few comments. Be sure to share your comments too. I want to know what YOU think and if YOU’RE surprised by any of the results.

1. Apparently, roughly 40% of Americans think cancer can be cured by alternative therapies alone. Younger people were found to be most likely to believe this. 

This is troubling. Potentially dangerous. And surprising. Or maybe not. There is a ton of misleading and potentially harmful information out there on the big wide web about how to go about tackling cancer. Some of this stuff is far out. I mean, really far out. Talk about snake oil. But some are touted so effectively, they sound pretty darn convincing.

Still, it’s far too easy to blame this one (and other problems, I might add) on the internet. The internet’s become a sort of scapegoat these days, don’t you think?

What exactly are alternative therapies anyway?

Things like a particular diet regimen, vitamin plan, aromatherapy, acupuncture, hypnosis, exercise and the like are generally considered alternative therapies.

Wait a minute, you might be thinking. Exercise and acupuncture are supposed to be good things to do when dealing with cancer aren’t they?

Indeed, but they are not intended to be the primary or only cancer treatment. They are often recommended as additions to standard or conventional cancer treatments as suggested in this Mayo Clinic piece. These things are advised to be used as coping tools to improve overall wellbeing, and they are important. Very important. But they are not intended to be the fix for cancer.

In Cancer Land, the above mentioned therapies are referred to as complementary or integrative therapies, the goals of which also align with supportive or palliative care. But again, when they are used as stand-alone therapies for cancer, they are considered alternative therapies. And that’s when they become problematic and even dangerous.

2. Another thing concluded by this particular survey was that 57% of Americans admitted that if faced with a cancer diagnosis, they’d be more concerned with the financial hit than they would be about suffering and dying from cancer. 54% reported their fear of the latter was greater.

This isn’t all that surprising. Healthcare costs are expensive just generally speaking. Cancer treatment cost is astronomical.

People are worried about the financial burden of cancer. Very worried. My family has insurance and the burden was/is still huge. Without any, or without adequate coverage, people are forced to make tough and sometimes heartbreaking choices about continuing treatment or opting out due to financial reasons as addressed in this piece, Pricey Precision Medicine Often Financially Toxic for Cancer Patients.

Opting out due to financial toxicity is very different from opting out because you’ve decided enough is enough and wish to end further treatment.

This extreme financial impact of cancer on a person’s or family’s finances is tragic, sad and unacceptable.

The survey also pointed out that rural Americans often struggle more with financial toxicity because of where they live. I grew up in a rural community. I still live far away from the big-name cancer centers. I understand about traveling distances to receive care. I understand about seeking out highly qualified physicians and top-notch clinics. Let’s just say, disparities definitely exist because of where you live.

Again, tragic, sad and unacceptable. 

3. Yet another interesting, though not surprising, revelation was that 73% of Americans believe a cancer patient’s use of opioids should not be unduly restricted and 83% believe cancer patients should have access to medical marijuana.

And yet as the survey also revealed, 40% of patients using opioids during the past year to deal with cancer pain, had trouble accessing them. Regarding medical marijuana use, 48% reported difficulty accessing it, and 58% wished they’d received more information about it.

4. So according to this survey, what do Americans want from Washington? 

In a word, what they want is action.

Specifically, Americans want Washington to take concrete steps to lower the high cost of prescription drugs, AND they want more investment in cancer research and care even if it means raising taxes and/or increasing the deficit.

Upon reading the results of this survey, you might think, yikes! It seems there’s a lot of work to be done. And there is.

But there was also good news. The majority of cancer patients are pleased with the cancer care they ended up receiving. Satisfaction was high at 89%.

So, there’s that.

It’s worth pointing out that this online survey was relatively limited in scope as only 4,887 US adults ages 18 and older participated. Of that group, about 1,000 have or had cancer. I didn’t see any breakdown of types of cancer or stage those 1,000 participants had been diagnosed with, but maybe I missed that. I do wonder if any stage 4 patients were included.

Another segment of the participants had a family member impacted by cancer but were not themselves caregivers. Within another segment, participants were caregivers. And within a final segment, participants had no personal or family experiences with cancer.

Other areas the survey covered included perceptions about lifetime cancer risk and causes of cancer, alcohol use and other lifestyle choices regarding cancer risk and perceptions about commercially available genetic testing. The summary is 82 pages and worth a look.

I’m no survey expert, so I have no idea if this is a big enough or diverse enough group to truly make concise conclusions, but regardless, the results were interesting.

What’s my main takeaway?

The results clearly indicate there is a lot of work yet to be done.

And everyone needs to lend a hand in seeing that it gets done.

The above reported data is via ASCO National Cancer Opinion Survey 2018 Key Findings Infograph. Do check it out.

More info and links to results are available here.

Speaking of all of us doing our part, my friend Alene Nitzky, Ph.D., RN, OCN, blogger, founder of Cancer Harbors and author is doing her part and more. Check out her new video series on cancer literacy going on in November via Facebook live.

Are you surprised by the results of this survey or not so much?

If applicable, do you worry more about suffering/dying from cancer or about financial toxicity to you and your family?

If applicable, have you had (or has your loved one had) difficulty accessing opioids or medical marijuana to manage cancer pain?

What are your thoughts about this survey’s results?

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What Do Americans Really Know About #Cancer? #cancerawareness #health

Alene Nitzky

Saturday 10th of November 2018

There is so much going on in our world and it is very scary and horrible that politics play a role in deciding who gets to live or die because of an illness. I am also sad about the loss of Dr. Otis Brawley's oversight in ACS. He is a good, caring, truly ethical person with the public's best interest at heart.

Thank you for spreading the word about my videos, Nancy. I hope that my Cancer Literacy project will help educate the public and dispel so much of the misinformation around cancer- I feel like they look at me like I'm the Grim Reaper whenever I have a table or booth at a health fair- but the people who have had cancer come right up and talk with me- understanding how important this is.

As the month goes on I'll be talking about metastatic cancer in my videos, because the public knows even less about that, and is even more fearful and in denial, but it is very real and cannot be ignored and we must talk about it and make it a topic of conversation so that there is a greater momentum to work toward better solutions, support, and treatments for Stage IV.

Donna Funkhouser

Wednesday 7th of November 2018

I live in Montana. Yesterday a plan was voted on and failed that would have allowed extended Medicaid to continue in our state, but since it was voted down, ex Medicaid will end June 30th. Without it, people will most def die because the reason they were on Medicaid to begin with was because they couldn't afford insurance. So, hearing that people feel more afraid of financial insecurity than becoming sick and dying doesn't surprise me. There is def work to be done. Sometimes I think we are going backward rather forward in this country and it's frightening.

Nancy

Thursday 8th of November 2018

Donna, I saw that MT had defeated that. Too bad for a lot of people. Several states will have it now after Tuesday's election, but of course, that doesn't help those in MT. I hear you about it sometimes feeling like we are going backward rather than forward. Boy, do I. Thank you for reading and sharing.

Linda Boberg

Wednesday 7th of November 2018

I read this survey. Admittedly, I am not a numbers person so some of it went into my brain and immediately out. What bothers me is that some people do not get cancer treatment because they don't have insurance. And some insurance companies dictate WHERE they have to get their treatment. That hit home for me when I got to go to a 'nice' infusion room and another patient was sent to the ER. That's awful. As to the financial burden, I could feel guilty about knowing that I can get care because I have insurance, but a poor woman cannot. That bother's me, too. Finally, since I was diagnosed I have felt like I am earning a Ph.D. in a subject that I never wanted to learn ANYTHING about. And I have no choice.

Nancy

Thursday 8th of November 2018

Linda, It horrifies me that some people cannot get treatment or wait too long to get it because they lack insurance. I believe every human being deserves healthcare. Healthcare is not something you have to earn or get access to just because you're lucky enough to be better off financially. And now days, even those who are better off still struggle. I was surprised by the first point I shared from the survey - that so many believe alternative therapies alone work. The disparities based on where you live did not surprise, nor did the financial toll cancer takes. Seems like we should definitely be able to do better all the way around. Thanks for reading and commenting.