® magazine, has been with the team since October 2020 and has covered health care in other specialties before joining MJH Life Sciences. She graduated from Emerson College with a Master’s degree in print and multimedia journalism. In her free time, she enjoys buying stuff she doesn’t need from flea markets, taking her dog everywhere and scoffing at decaf.

Darlene Dobkowski, MA

Approximately one-third of articles on breast, prostate, colorectal and lung cancers shared on social media sites may contain misinformation that may lead to potential harm in patients.

Findings from this study were published in the 

“The real concerning part about (these findings) is that this misinformation has consequences,” said Dr. Skyler B. Johnson, assistant professor in the department of radiation oncology at the University of Utah Huntsman Cancer Institute in Salt Lake City and lead author of the study, in an interview with CURE®. “Our expert reviewers assessed that of the articles that contain misinformation, almost 4 out of 5 of those contained harmful information.”

Johnson added that he and his team found that articles with misinformation were more likely to be shared on sites like Facebook, Twitter, Pinterest and Reddit.

“(Patients) are more likely to see these types of articles (with misinformation) than they would factual and safe articles because these articles get more engagement online, whether it be through comments, shares, likes, what have you,” he said.

In this study, researchers reviewed 200 articles total, which included 50 of the most popular social media articles on each of the four most common cancers: breast, prostate, colorectal and lung cancers. Two cancer experts assessed these articles for misinformation and harmful information.

“Misinformation was assessed by our cancer experts to be those articles that had primary cancer treatment claims that had a mixture of false and true information, mostly false information or entirely false information,” Johnson said. “Then on the harmful (information) side, this could have been assessed in any number of different ways, but it (included) recommendations to delay proven cancer treatments, claims of ineffective cancer treatments, recommendations for cancer treatments that had been disproven, recommendations for treatments that are unproven and then recommendations for treatments that are either very costly out of pocket or require travel, which could be costly as well, so there (are) financial harm implications.”

Of the 200 articles included in this study, 32.5% contained misinformation and 30.5% contained harmful information. In addition, 76.9% of the articles that contained misinformation also included harmful information.

Researchers also assessed the number of engagements (shares, likes, etc.) that articles with misinformation received on social media sites. Articles with misinformation had a greater median number of engagements compared with factual articles (2,300 engagements versus 1,600 engagements). Articles with harmful information also had more engagements than safe articles (2,300 engagements versus 1,500 engagements).

Although researchers were unable to look at user-level data in this study, Johnson said he may have an idea as to why articles with misinformation or harmful information may receive more engagement than factual articles.

“There's something about patients who want to find interesting and unique information that might make them feel special or privileged, where they take control and autonomy over their own care and feel like they're taking an active part in curing their own cancer,” he said. “My major concern, and the concern of the coauthors of this work, was that there's misinformation silos, where the social media companies’ algorithms amplify this type of information, wherein it's more available.”

Another limitation to this study is the fact that researchers focused on articles on common cancers. Despite this, Johnson thinks that findings from this study can be applied to other cancer types.

“We're currently doing some back-end database article-specific work evaluating which articles are associated with higher rates of misinformation and article-specific factors,” he said. “Interestingly, at least, it appears that cancer types that have not quite as good survival rates as cancers like breast and prostate cancer have more misinformation and harmful information. I would say that it's applicable. And it might even be more applicable in other settings where cancers have lower cure rates than for breast and prostate (cancers).”

Johnson was not only a researcher of this topic, but he also had personal experience in this area, as his wife received a diagnosis of cancer when he was in his second year of medical school.

“When (my wife) was diagnosed with her cancer, the first thing that we did — and I suspect that most people do this — is hop online and Google what's the treatment, what's the prognosis,” Johnson said. “And fortunately, … I had some medical training, and I was able to sift through what was inaccurate information and what was accurate information. One thing that her and I both came away from that experience with was a knowledge that there's a lot of misinformation out there. It is pretty challenging to be able to know who to trust and whether what's being said is true or not.”

This experience with misinformation on social media sites also ties into Johnson’s experience as a radiation oncologist.

“I have seen a number of patients who have unfortunately believed the misinformation that they saw online, and that's led to either a delay in the initial diagnosis of their cancer, a delay in receiving treatments and, in some very unfortunate circumstances, the complete refusal of the proven cancer treatments that we do have,” Johnson explained. “This is heartbreaking, especially for those patients that have curable cancers, because the consequences of those decisions are dire. I've seen it personally. If you talk to many oncologists, they'll tell you that it's one of the sadder cases that we see. And unfortunately, we do see it fairly often.”

As common as misinformation and harmful information is on social media, Johnson had some advice for patients as they search online for resources.

“(Patients) should be looking for websites that (are) .edu websites, often .gov websites,” Johnson said. “The National Cancer Institute is a great resource for patients. … Oftentimes, I'll (suggest) sources that (patients) should be wary of. Those are often (sites) where claims are too good to be true or they elicit conspiracy theories where treatments are ineffective and things of that nature. But I also make sure that patients know that lines of communication are open; if they read something online or if they hear something from a well-meaning family or friend, they should feel comfortable asking me about it. The last thing that I'd want them to feel is judged or that I wouldn't be understanding of their interest. Our goals are similar and that's to cure the cancer and make sure that we do it with as little side effect as possible. When our goals align, we work as a team, and that's how I hope we can approach things.”

For more news on cancer updates, research and education, don’t forget to 

Articles

Articles containing misinformation on social media sites like Facebook and Twitter were more likely to be shared and liked than those with accurate information.

Inaccurate Information on Cancer Diagnosis and Treatment Common on Social Media Sites

Diagnosing and staging chronic lymphocytic leukemia (CLL), the most common form of leukemia in the U.S., allows patients to better manage their disease, even if they are in early stages where a wait-and-see approach is most appropriate.

Dr. Nitin Jain, associate professor in the department of leukemia at the University of Texas MD Anderson Cancer Center in Houston, discussed the basics of CLL diagnosis and staging at the CURE® Educated Patient

 Leukemia Summit. CURE® also spoke with Jain to learn more about how CLL is diagnosed, when to get a second opinion and how staging the disease is different than solid tumors.

CURE®: Why is it so important for patients and caregivers to know this information?

Jain: About 21,000 new patients are diagnosed (with CLL) each year. It's expected that around … 200,000 patients are living with CLL. It's a large group of patients and their caregivers we're talking about.

One of the important aspects in CLL is how do we diagnose CLL. It’s a common thing that comes up for patients. Many times, patients are diagnosed when they go to the local doctor, they have bloodwork, the primary care doctor tells them that something is going on and they should see a hematologist. (The patient sees a hematologist), they have a blood test and then the doctor tells them they have CLL.

It’s very important for patients and their caregivers to know what exactly CLL is, how we diagnose CLL, (does the patient) need a bone marrow (biopsy) to diagnose CLL or can we diagnose in blood, what tests are involved and then obviously an important aspect is how do we treat and manage CLL.

How is CLL typically diagnosed, and are there are misconceptions along the way that patients may encounter?

CLL is chronic lymphocytic leukemia, and there is also a very close terminology called SLL, small lymphocytic lymphoma. It (can be) confusing for the patients and caregivers because the primary care doctor or their local oncologist, may say, ‘You have CLL.’ Someone (else) may say you have SLL. But it's important to know that both these diseases pretty much represent the same spectrum. If you have more disease in the blood, it’s called CLL. If you have more disease or limited disease in the lymph node, it’s called SLL. But these are the same cancer cells, and they are managed and treated the same way. In fact, in clinical trials, we use the term CLL and SLL almost interchangeably. That's one important aspect.

The second (aspect) is that the diagnosis is pretty straightforward and can be done by a test called flow cytometry, which (looks) at different proteins on the surface of the cancer cells. These can be done in the blood, as well as a bone marrow or a lymph node biopsy. Most of the time, the diagnosis can be made just on the blood. So they collect the blood, run the flow cytometry and that gives the diagnosis.

If the blood is not sufficient for the diagnosis or there are some markers which are not 100% consistent with CLL, … the pathologist would recommend doing either a lymph node biopsy or a bone marrow biopsy to confirm the diagnosis of CLL. For the majority of the patients, a blood test for flow cytometry should be able to establish a diagnosis of CLL.

Once a patient receives a diagnosis of CLL, how is the disease staged?

Once the CLL diagnosis is established, there are two classifications which are used for the staging of CLL, Rai and Binet classification. In the United States, the most common classification is called Rai classification. This was developed by Dr. Kanti Rai, who was a practicing physician in New York back in the 1970s. (Rai classification) goes from 0 to 4. Stage 0 is (when) you have elevated blood lymphocytes but nothing else, no other issues. If you start having increase in the lymph nodes, and the doctors can feel the lymph nodes in your neck and your armpits, and that's called stage 1. If we can feel the liver or spleen, that's called stage 2. If you develop low hemoglobin, that's called stage 3. If you develop low platelets, that's called stage 4.

What's more important for patients to know is that for most patients with stage 0, stage 1 or stage 2, in the early stage of the disease, the recommendation is just watch and wait. We don't really treat patients right away. But if you have stage 3 or stage 4 disease, which means that you have low hemoglobin or low platelet count, that really needs to be treated.

One thing I would emphasize is that (staging CLL is) a bit different from what we understand about staging maybe in the context of lung cancer, breast cancer or some other cancers, where stage 4 indicates metastatic disease, which has a much different prognosis than stage 1, which is a more localized cancer, and you can do surgery or radiation. In the context of CLL, though, we use stages 0 to 4, but they have somewhat different meanings than what you think of stage 4 in the context of a solid tumor.

What happens once a patient is diagnosed and staged?

Once you have established the diagnosis (of CLL) and then stage the disease, the next question is how do we manage these patients with CLL. There are specific, very effective treatment regimens which are now available for patients. But at the same time, the majority of the patients, when they're diagnosed with CLL, their standard recommendation is watch and wait. It could be years before a patient needs treatment for their CLL. Certainly, there are very effective treatments available now, and more effective and safer therapies coming along in the future. The future is very bright in terms of the therapy options we have for patients with CLL.

What advice would you give patients and their caregivers who are undergoing the diagnosing and staging process for CLL?

If there are any concerns about the diagnosis of CLL, because sometimes flow cytometry, blood and bone marrow may not be conclusive, it's certainly advisable to get a second opinion. There are many centers of excellence for CLL in the United States. So, approach those centers and get your bone marrow slides reviewed or get additional testing done for the confirmation of diagnosis.

At the same time, there are now trials which are being developed even for patients with (early-stage) CLL. You may be eligible for one of those trials, or at least you can learn more about those trials by going to some of these university hospitals, which have a lot of CLL clinical trials going on. I would advocate to seek a second opinion to learn more about the disease from some of these centers and to see if there (are) any clinical trial options which you may be interested in, which (are) available at that center and you could benefit from.

Although CLL follows a different staging format than other cancer types, diagnosing the disease properly can open the doors for more effective treatment and management strategies.

Navigating Chronic Lymphocytic Leukemia Diagnosis and Staging

Patients with heart failure may have a significantly higher risk for cancer compared with those without heart failure.

Findings from this study were published in 

 and may demonstrate how cancer and heart failure may share similar risk factors.

“Heart failure patients, who are also affected by reduced life expectancy, are now living longer,” said Dr. Mark Luedde, from the cardiological group practice in Bremerhaven, Germany, in an interview with CURE. “They are also at greater risk from other chronic diseases. Cancer is certainly an important burden here. We believe that in addition to the other medical measures necessitated by heart failure, affected patients should also be screened for cancer more closely than unaffected people of comparable age.”

Recently, more focus has been placed on cardio-oncology, which includes both the cardiac-related side effects of antitumor therapies and the increased incidence of cancer in patients with heart failure, for example. To assess the association between cancer incidence and heart failure, researchers analyzed data from 100,124 patients (mean age, 73 years; 46% men) with heart failure and 100,124 patients (mean age, 73 years; 46% men) without heart failure who were treated in Germany between 2000 and 2018. Patients with heart failure were paired with those without heart failure based on age, sex, obesity, diabetes and annual frequency of visiting their doctor, which potentially aided in better assessment of the data.

“We would like to emphasize that our data are based on a very large cohort of (less than) 200,000 patients, which ensures the high scientific reliability of our results,” authors wrote. “This enabled us to provide a broad correlative picture of the association between heart failure and several tumor entities, while other studies have concentrated on single tumor entities only.”

During a 10-year period, cancer was diagnosed in 25.7% of patients with heart failure and in 16.2% of those without heart failure. In women who were diagnosed with cancer, 28.6% had heart failure and 18.8% did not. In contrast, 23.2% of men with heart failure and 13.8% of men without heart failure were diagnosed with cancer.

There was a significant association between heart failure and the incidence of cancer regardless of the specific cancer site. The strongest link between heart failure and cancer incidence was demonstrated in lip, pharynx and oral cavity cancers, followed by respiratory organs and genital organs in women.

“It is important to note here that our data show a statistical association and not a compelling causal link, but the association is so strong that a causal link can be naturally assumed,” Luedde said. “The particularly strong association of heart failure and cancer of the oropharyngeal and respiratory organs suggest common risk factors, for example, nicotine use. However, there is also discussion of heart failure’s own cancer-causing potential. For example, heart failure is also an inflammatory disease; an underlying inflammatory state of the body could promote (tumor growth). Various molecules that are produced in the failing heart and are also partially released into the blood act as oncogenes.”

Researchers also observed strong associations between heart failure and the incidence of skin tumors, cancer of hematopoietic and lymphoid tissue, breast cancer, cancer of the digestive tract and cancer of the genitourinary tract. The weakest association was seen for genital organ cancer in men, although it was still highly significant.

“Since we are still at the beginning of the research, (how patients with heart failure can potentially reduce their cancer risk) cannot be answered conclusively,” Luedde said. “Optimal drug therapy for heart failure is certainly a component. In addition, the age-appropriate cancer screening measures should be taken in any case. Another factor that can protect against both heart failure and cancer is the avoidance of risk factors such as nicotine, but above all, regular exercise. Every heart failure patient in stable condition should exercise. It has been well shown that this can also protect against cancer.”

Patients with heart failure may have an increased incidence of cancer, which may be a result of similar risk factors including obesity and diabetes.

Heart Failure May Increase Cancer Risk

Delayed mammograms and breast cancer diagnoses during the COVID-19 pandemic may have a small long-term impact on breast cancer mortality rates up to 2030, according to results of a study with simulation modeling.

Findings from this study published in the 

Journal of the National Cancer Institute 

highlight the importance of continuing breast cancer screenings and evaluations in symptomatic women.

“Some women simply skipped their mammogram if they were scheduled to undergo a mammogram during the pandemic,” said Oguzhan Alagoz, who holds a PhD in industrial engineering and is a professor of industrial and systems engineering at University of Wisconsin-Madison, in an interview with CURE. “What we are suggesting is rather than skipping the mammogram and waiting for your next mammogram — whether it is in two years or next year — this suggests you need to make up that missed mammography exam as soon as possible. That’s the primary means of undoing the impact of the pandemic.”

When the COVID-19 pandemic first started, screening mammography and diagnostic mammography declined up to 80%, according to the study’s introduction. There were also changes in breast cancer treatment protocols, which led to treatment delays and lower rates of chemotherapy administration.

“In this short term, there was a huge reduction in the number of screenings (and) diagnoses,” Alagoz said. “The concern is if we have these short-term declines in breast cancer control activities, what will be the impact in the long term? Breast cancer is an interesting disease, … where if you delay mammography, you’re not going to see the full effect of it in six months or 12 months. Sometimes, some of these effects are seen in five years, 10 years.”

To assess the potential long-term impact of breast cancer control disruptions during the COVID-19 pandemic, researchers used three established breast cancer models to simulate reductions in mammogram screenings, delays in the diagnosis of cancer in symptomatic patients and reductions in chemotherapy treatments for women with early-stage breast cancer. These scenarios were assessed within the first six months of the pandemic, when reduced screening rates were observed, following a return to patterns similar to before the pandemic.

Alagoz provided the reason as to why researchers only focused on the first six months of the pandemic rather than the entire pandemic.

“By the end of the summer of 2020, many practices, clinics and health systems actually made up all of the missed mammography exams,” Alagoz said. “We have seen the screening volumes basically reach almost 100% capacity back in the summer. I (spoke) with our radiologist collaborators, (who) are telling me that they scheduled additional weekend and weeknight mammographic screenings.”

Based on the model projections, researchers found that by 2030, there could be 950 cumulative excess breast cancer deaths related to reduced screenings during the COVID-19 pandemic. In addition, there could be 1,314 deaths from the delayed diagnosis of symptomatic patients and 151 deaths linked with reduced chemotherapy in women with hormone-positive, early-stage cancer. Collectively, there may be an estimated 2,487 excess breast cancer deaths, which represents a 0.52% increase in deaths by 2030 compared with models indicating breast cancer deaths without the effect of the COVID-19 pandemic.

Although any increase in mortality rates isn’t ideal, Alagoz mentioned that these results were a “pleasant surprise” for his research team.

“Before I started this study, I was really expecting a significant number of breast cancer mortality over the next 10 years due to the pandemic,” Alagoz said. “Fortunately, the impact is actually relatively small (in magnitude). I was expecting maybe 10,000 additional deaths, 15,000 additional (deaths), but our modeling suggests that we are going to see an additional 2,500 deaths over the next 10 years due to the pandemic.”

He mentioned that these lower-than-expected increases in mortality rates are a somewhat positive finding of the study.

“I think the silver lining in this unfortunate paper is that the impact is not as high as I was scared it would be, which is good news,” Alagoz said. “Primarily, that is because many practices — after the initial shock of the pandemic — and many patients were able to actually make up the exams and did resume the normal operations within a six-month period.”

Alagoz added that delays during the COVID-19 pandemic did not greatly affect women who were already diagnosed with breast cancer.

“Our findings show that disruptions didn’t affect (these women) too much,” Alagoz said. “In other words, anybody who was supposed to get surgery, radiotherapy or chemotherapy, they already got the treatment. Oncologists aware of the really terrible potential effect of delaying the treatment or stopping the treatment didn’t really change treatment practices very much. The patients who were already diagnosed with breast cancer prior to the pandemic, the effect of the pandemic on their care or mortality, we found, is limited.”

Although there are some effects of the COVID-19 pandemic that can be undone, such as making up missed mammograms sooner rather than later, Alagoz said there are some consequences that cannot.

“For example, … many women during their self-exam (or) during their annual physician visit, they observe a palpable lump in their breast and then they go and visit the clinic,” Alagoz said. “And those cases dropped significantly during the pandemic. There is very little we can do to undo those effects. Those women already came for a delayed diagnosis, maybe like three months (or) six months later, and, unfortunately, there is not much we can do to undo that. But at least for the screening mammography exams that women (missed), we can certainly mitigate the impacts of the pandemic.”

A modeling study demonstrated that breast cancer mortality may increase by 0.52% by 2030, but effects of delays during the COVID-19 pandemic may be mitigated by making up screenings sooner than later.

Darlene Dobkowski, MA

Inaccurate Information on Cancer Diagnosis and Treatment Common on Social Media Sites

Navigating Chronic Lymphocytic Leukemia Diagnosis and Staging

Heart Failure May Increase Cancer Risk

Disruption in Breast Cancer Care During COVID-19 Pandemic May Slightly Increase Long-Term Mortality

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