Tag Archive for: cancer patients

January 2023 Notable News

This month the focus is on cancer screening and education, both equally important in improving patient outcomes. A new metabolite has been found in urine of patients with a form of liver cancer, allowing for a new urine screening tool to detect the cancer. Pancreatic cancer is one of the deadliest cancers; education about symptom recognition could help save lives with earlier detection. Scientists are studying how cells move through the body with the hope of preventing metastasis of cancer cells in the future.

Urine Test Hope for Early Liver Cancer Diagnosis

Staff at the Cancer Research UK Beatson Institute in Glasgow have identified a metabolite never found before in mammals which could indicate the presence of the disease reports BBC News. Currently, there is no urine test available for any kind of cancer. Liver cancer is usually diagnosed through blood tests, ultrasound scans, and surgery. Scientists discovered a new metabolite while studying glutamine synthetase, which is a protein present in normal liver tissue of mice. This new metabolite is called N5-methylglutamine and is present in the urine of patients with a specific type of liver cancer. This specific liver cancer has a gene mutation of beta-catenin. This urine test will indicate if the patient has this form of liver cancer and may also be used to monitor growth of tumors. Diagnosis of liver cancer is often in the late stages, making the patient’s outcome less favorable. This test could allow for earlier diagnosis and treatment, leading to better patient outcomes. Click to read the full story.

14 Signs of Deadliest Cancer You’re Most Likely to Ignore

Pancreatic cancer, one of the deadliest forms of the disease, is particularly hard to spot as it does not cause and signs of symptoms in the early stages reports The US Sun. This cancer typically has a lower survivability rate of death in less than 3 months of diagnosis. The pancreas is located behind the stomach and under the liver, this location makes it difficult to treat. The purpose of the pancreas is to put digestive enzymes in the stomach to break down food. It is also responsible for releasing hormones that regulate blood sugar. Understanding some common symptoms associated with pancreatic cancer could help with earlier cancer detection. Due to the pancreas’ functions, common symptoms are indigestion, abdominal or back pain, nausea, and loss of appetite. More symptoms can include weight loss, fatigue, changes in bowel habits, and difficulty swallowing food. Patients can experience jaundice, itchiness, and depression or anxiety. Pancreatic cancer diagnosis can sometimes be detected with a recent diabetes diagnosis since the pancreas regulates blood sugar. Finally, blood clots can occasionally be a sign of cancer. Click to read the full story.

A Look at How Cancer Cells Move and Metastasize Could Help Doctors Stop Them From Spreading

Instead of focusing on just the effect of the “solid” environment of cells, researchers are turning toward their “fluid” environment reports Popular Science. Scientists are studying how fluids affect cell migration. In cancer cells, the fluid between the cells is thicker than healthy cells. This thicker fluid causes cancer cells to move and spread quicker. The cancer cells maintain a memory after being in the thicker fluid and continue to move faster and leak out into surrounding tissue causing metastasis. Metastasis is usually what kills cancer patients. This new knowledge that fluid viscosity affects cell migration can be used to create potential drug targets to reduce the spread of cancer. Click to read the full story.

December 2022 Notable News

Research is a valuable tool in every aspect of cancer; prevention education, treatment advances, and effectiveness of new treatments. New research has shown that survivors of childhood cancer have a significant increase in risk for cardiovascular issues. Oral chemotherapy is a new modality for cancer treatment and research shows the pros and cons of this treatment. This month, research confirms that there is a direct link between alcohol consumption and increased risk in getting certain cancers. All these studies will help to educate cancer patients, causing better outcomes for people.

Survivors of Childhood Cancer Face a Higher Risk of Cardiovascular Disease

The researchers said the risk of cardiovascular disease was significantly higher in cancer survivors in virtually all categories, including sex, race/ethnicity, income, education, smoking status, and physical activities reports healthline.com . The increased risk of cardiovascular disease for survivors of childhood cancer comes from the use of chemotherapy and radiation to treat the cancer at an early age. The class of chemotherapy commonly used is anthracyclines and it is known to place patients at risk for damaging the heart muscle. Radiation therapy directly to the chest causes damage to the heart muscle and the heart valves. The research did show an increase in risk to children that were treated for cancer in households making under $50,000. To reduce the risk of cardiovascular disease for these patients, they should follow a healthy diet, maintain a healthy weight, and do not smoke. Oncologists need to refer childhood cancer patients to cardiologists for screening to find cardiovascular disease in its early stages. Catching the disease in its early stages allows for prompt treatment and better outcomes. Click to read the full story.

Oral Chemotherapy: What are the Advantages?

Chemotherapy kills or slows the growth of cancer cells. In some cases, it can eliminate cancer. In others, it prolongs life by slowing down the progression of the disease reports MedicalNewsToday.com . Oral chemotherapy can come in the form of a pill or liquid that can be swallowed or placed under the tongue. This treatment can be given at home which is less expensive and less inconvenient for cancer patients. The dosing of oral chemotherapy is especially important and requires clear instructions from the doctor. The medication requires special handling such as wearing gloves and storing it at a specific temperature. It needs to be kept secure and dry in an airtight container away from food, children, and pets. The side effects of oral chemotherapy are the same as IV chemotherapy; hair loss, fatigue, nausea, and bruising. It is important to log side effects and notify the doctor of vomiting. There are several disadvantages to taking chemotherapy orally. If a patient has an adverse reaction to the medication, they are at home instead of with a medical professional and will take longer to get help. This medication given orally is very dose dependent and patients can make errors at home that affect the treatment outcome. There is also a high out of pocket expense in using oral chemotherapy versus IV, some insurance companies will not cover the cost of oral chemotherapy. Oral chemotherapy is not available to treat all forms of cancer but in some cases, it has been proven to be more effective than IV chemotherapy. Click to read the full story.

Alcohol and Cancer Risk: Most Americans Aren’t Aware

The new study, published in the journal Cancer Epidemiology, Biomarkers & Prevention, notes that there are seven cancer types that have been linked to alcohol consumption reports Healthline.com . The types of cancers linked to alcohol consumption are mouth and throat, larynx, esophagus, colon and rectum, liver, and breast cancer. Alcohol consumption is one of the leading modifiable risk factors for people to prevent cancer. Since the pandemic, consumption of alcohol is on the rise. There needs to be interventions made to help educate people on the direct link to cancer such as media ads, warning labels, and doctor’s educating their patients. Older Americans are less aware of the increased risk of cancer form drinking alcohol. There is no safe level of drinking of any kind of alcohol and this needs to be emphasized to help prevent cancer. Click here to read the full story.

October 2022 Notable News

The month of October brings exciting legislature to help patients afford available cancer treatments. Once passed, this legislature could make cancer treatment equitable and affordable while having a profound impact on the future. Scientists have created a new cancer vaccine for high risk melanoma patients that when given in combination with a cancer medication has encouraging results. Scientists have also found an experimental treatment for cancer that uses a modified herpes virus that has very promising early results. Lawmakers have an impact on cancer treatment by regulating laws that govern the insurance companies and are equally as important as the scientists finding the new cancer treatments.

Insurance Companies Shouldn’t Decide Which Cancer Treatment You Get. That Could Change.

There is a term that is familiar to cancer patients and providers, financial toxicity. Financial toxicity is when patients cannot afford the available treatment for their cancer. New options for cancer treatment are available; it used to be just IV medications but now there are oral medications to treat cancer. Insurance companies do not look at the two cancer treatments the same. They often deny coverage or impose huge out of pocket costs for the oral medication despite that doing so puts the patient at risk and violates the doctor-patient relationship by ignoring a prescribed treatment plan, in favor of saving money reports CharlotteObserver.com. There is legislation in front of congress called Cancer Drug Parity Act that could change this for cancer patients. This Act asks for the health plan to cover the level of cost share for all different kinds of cancer medications; it would assure the patients under the plan would get the treatment that they needed. There have been 40 states that have passed legislation regulating insurance plans, this act addresses the federal government. This legislation keeps the decision about cancer treatment between the patient and the oncologist. Click to read the full story.

A Cancer Vaccine for High-Risk Melanoma Patients

Scientists have created a cancer vaccine for Stage-2 melanoma that is custom for each patient. This vaccine is based on messenger RNA technology. The goal of Moderna’s vaccination is to stimulate the immune system to release killer T cells that specifically target particular mutations in patients reports HealthDigest.com. Scientists will give the vaccine with a drug already FDA approved called Keytruda. Keytruda is a monoclonal antibody that is already used to treat certain cancer types. Melanoma is a skin cancer that starts in the cells that make melanin and it is the deadliest form of skin cancer. Melanoma can spread to other parts of the body. It is caused by UV exposure from the sun or tanning bed and the UV rays damage DNA. Early detection increases survivability. Wearing sunscreen that blocks the damaging UV rays is important for prevention of melanoma. This vaccine in combination with Keytruda offers hope for people at high risk of developing melanoma. Click to read the full story.

Experimental Treatment With Modified Herpes Virus Cured Terminal Cancer

Scientists have managed to wipe out terminal cancer using a modified version of the herpes virus. A patient in a trial for the cancer-extermination virus saw his cancer completely disappear after the treatment. Over 15 months later, he has remained cancer free, according to the Institute of Cancer Research in London reports BGR.com. This treatment is still in it is early stages but is offering positive results and hope for cancer patients.There have been other viruses used to treat disease and cancer, the safety of the virus dosage is scientists biggest concern. The virus multiplies in the tumor and causes the tumor to burst from the inside out. The virus also increases the immune system’s ability to kill the cancer. Viruses help scientists target the cancer cells specifically. It is an example of looking at something that typically harms the body, in a new light to kill cancer. Click to read full story.

Home Safety Tips for People with Cancer

Cancer and its treatment can cause you to feel fatigued, dizzy, and weak. They both can contribute to a loss of balance and an increased risk of infection. Needless to say, many people with cancer and even those going through treatment need to prioritize staying safe and secure at home.

Thankfully, there are plenty of safe, effective, and easy ways you and/or your caregiver can help you maintain your safety at home. It should be a sanctuary of comfort, and a place where you shouldn’t have to worry about your condition limiting you in any way. Rest and relaxation are important when it comes to recovering.

So, how can you ensure that relaxation at home by making sure it’s safe?

Let’s cover a few home safety tips you can use to maintain your independence and prioritize your well-being while dealing with cancer or going through treatment.

Home Modifications

One of the easiest ways for a person with cancer to boost their safety at home is to make some basic modifications. In most cases, there’s no reason why you can’t enjoy your independence with a few simple swaps. Some of the easiest ways to improve your safety by modifying things in your home include:

  • Removing rugs
  • Creating clear pathways in rooms
  • Increasing the lighting
  • Installing shower grab bars
  • Utilizing small ramps throughout the home

As you can see, it doesn’t take a lot of DIY know-how or experience to make these changes, but they can end up making a big difference in your safety. You’ll reduce your risk of tripping and falling, and you’ll have more support when you’re doing everyday tasks like showering or going from room to room.

Hire a Caregiver

If you’re a person with cancer reading this and you don’t already have a caregiver, it might be time to consider hiring one. It doesn’t necessarily have to be a permanent situation, but a caregiver can help with everyday tasks and ensure your safety while you’re there. You’ll also enjoy some wonderful benefits, including:

  • Companionship
  • A greater sense of dignity
  • Better health tracking
  • Reassurance
  • Flexibility

Caregivers can do just about anything. Maybe you need someone to run errands and do shopping for you, or just for someone to keep your environment clean. You can even consider working with a caregiver who has a medical background, so they can help to administer medications and make sure you’re staying active. Most home caregivers are well-versed in things like first aid, and they’ll know how to keep you safe or provide immediate assistance in case of an emergency.

There are countless caregiving sites online where you can find someone who will work with you and meet your needs. Or, consider asking your doctor for any recommendations they might have. Your caregiver could end up being a very close friend. Loneliness can be a huge problem for people with cancer or those going through treatment. We saw the consequences of that throughout the COVID-19 pandemic. A caregiver will not only be a companion, but a built-in support system that can make your days easier, safer, and more vibrant.

Steer Clear of Infection

People with cancer are often at a greater risk of developing an infection, which can complicate both the illness and treatment and make you much sicker. Keeping your home clean and as disinfected as possible is imperative. You shouldn’t have to feel like you’re walking on pins and needles in your own home because you’re worried about developing an infection.

However, you might not have the strength or energy to clean every day, either. A caregiver can help with that, but you can also do things to make life easier on yourself and keep harmful substances (and critters!) out of your home.

For example, you can reduce the risks of rodents and pests getting into your home and carrying in harmful bacteria by sealing up cracks and holes, making sure all food particles are cleaned up, and cleaning yourself and your clothes once you get inside if you’ve been spending some time outdoors. Being outside in nature is a fantastic way to boost your immune system, reduce stress, and improve your energy levels. But, don’t put yourself at risk of getting sick, injured, or bringing in bacteria. Take the proper precautions to protect yourself.

There’s no reason why people with cancer shouldn’t feel safe at home. Change can be hard to deal with, especially when it comes to modifying your home or bringing someone new in to help you with everyday tasks. However, your health needs to be your top priority, and to stay healthy, you also need to stay safe.

Keep these tips in mind and don’t be afraid to reach out for help if you need it. With a few changes (and additions), you’ll feel safer and more comfortable at home than ever.

Psychosocial and Emotional Impact of Cancer: Change on Career Plans

As young cancer patients, we have to endure more than our disease, but the life changes that come with it. One of the changes may be a change in career plans, and this can have a varying psychosocial and emotional impact.

For me, personally, having a cancer diagnosis at the age of 27 vastly changed the direction of where my career was headed. I was working in healthcare already and also attending graduate school, but I didn’t know what kind of role I wanted to have in healthcare when I graduated. Getting cancer during this time and going through a very personal, yet somewhat traumatic experience helped me to realize that my purpose in life is to help other cancer patients. However, it’s not always as clear why we got cancer at the age we did, and how that will continually affect us. There are also no clear-cut rules on whether we should continue working even if we’re going through treatment, whom to tell about our diagnosis, and how, or how best to describe a gap in our resume. Luckily, the Cancer and Careers website has all the answers to some of our biggest questions:

  1. Should I tell my employer?
    • Consider the side effects of treatment, the general law about disclosing, and your environment
      • If you think you’ll need to request a reasonable accommodation or medical leave, you may have to disclose a medical condition but not necessarily the diagnosis
      • Is your company big or small? Do people have close-knit relationships?
      • What are your side effects like and will they affect your daily productivity?
  2. If I need to tell my employer, when do I tell them and whom do I go to?
    • It is best to let the people below know when you and your healthcare team have developed a plan for treatment
      • Your boss – generally you are protected by the ADA if you’ve made your employer aware of a medical condition
      • Human resources department
      • Co-workers, if you feel comfortable
  3. What do I tell them?
    • Tell only as much as you want and prepare ahead of time what information you want to share
    • Tell them what to expect, for example, future absences or even changes in appearance
    • Reassure that you’re still a part of the team!
  4. How do I explain a gap in my resume?
    • Remember that you’re not required to disclose your diagnosis during an application process or interview
    • Know that it is prohibited by law for any recruiter to ask about “health issues” should you choose to use that phrase to explain the gap
    • If your resume, list your skills first, and highlight community or volunteer work, as well as part-time and freelance work

More Resources:

August 2022 Digital Health Roundup

As technology improves, it has a direct effect on improving cancer detection and patient outcomes. New artificial intelligence (AI) is combing several types of available health and research data to predict patients’ cancer outcomes. Improvements in the abilities of the CT scan increase precision of treatments, increasing quality of life for patients. Grady Memorial Hospital in Atlanta, Georgia is using AI to improve colon cancer detection for their community.

New AI Technology Integrates Multiple Data Types to Predict Cancer Outcomes

A new study from researchers from the Mahmood Lab at Brigham and Women’s Hospital reveals a proof-of-concept model that uses artificial intelligence (AI) to combine multiple types of data from different sources to predict patient outcomes for 14 different types of cancer reports MedicalXpress.com . The researchers used publicly available information from The Cancer Genome Atlas about the many genomic types of cancer. In considering how to treat cancer patients’, clinicians get information from many sources. They use patient health information, patient family history, histology, as well as the genomic sources. This is a large amount of information to consider and is time consuming to gather from all available resources to make accurate predictions of the patient outcome. Researchers have developed an algorithm that learns prognostic information from many sources. This new AI uses the algorithm to help predict the cancer patient’s outcome. Included in this algorithm is information from the doctors about the patient’s immune response, patient radiology, and the patient’s electronic medical record. This AI is another tool to help the physician and patient treat the cancer and have a better outcome. Find more information here.

New CT Technology to Diminish the Overall Burden of Cancer Treatment

The flat table of a CT could only move right to left, back to front, and up and down. The newest technology allows the table to roll, and Dover explained that it is similar to a “log roll,” and it also can move like and “X” reports TrussvilleTribune.com . Radiation used for cancer treatment is a valuable tool, but it can also be very damaging to the surrounding organs and tissues. Clinicians must align the patient in exactly the right position to give the dose of radiation needed, this new CT allows for millimeter precision. The new availability of table positions allows for a higher dose with fewer treatments and greater accuracy. This new CT also is better for patient convenience by decreasing patient travel time with the need for fewer treatments. More of the radiation dose can go directly to the tumor which allows for better chances of a successful treatment. With less radiation damaging other areas of the body, there are less long-term side effects. This gives patients better outcomes short-term and long–term. Another advance with this CT scan is that it can monitor patient breathing cycles. It can show changes in the body position throughout the breathing cycle in real time to help the clinician make the needed adjustments. Find more information here.

Grady Memorial Hospital to Use AI Technology to Improve Colon Cancer Screening

Grady Memorial Hospital is using a new technology platform donated by Medtronic to improve colon cancer screening in medically underserved communities reports healthleadersmedia.com . The GI Genius modules uses an artificial intelligence algorithm to help doctors find colorectal polyps in real time. There is a higher risk for colon cancer in Black adults. Once diagnosed, Black adults have been having worse outcomes. Research shows that part of the problem is a knowledge barrier; patients are not aware that the screening age for colon cancer has changed to 45 years of age. At Grady Memorial, 30% of their patients are uninsured so there is a cost barrier to cancer diagnosis and treatment. This technology is an AI-assisted colonoscopy, combining the AI with the physicians’ own eyes and experience. The GI Genius has been shown to improve cancer detection by 50%. Earlier colon cancer detection equals better outcomes for patients. Find more information here.

Patient Advocacy: How To Boost Your Visibility on LinkedIn

In my previous post, I shared with you tips to optimize your LinkedIn profile.  Recall that I recommended LinkedIn as the best social network for enhancing your professional online presence and showcasing your advocacy activities.

If you have put into practice the tips from last month, you should now have a professional-looking profile. So let’s discuss ways you can make your profile more visible on the site.

In essence, you must appear more frequently on LinkedIn, share engaging content, and engage consistently to increase your visibility.

The following are my top recommendations for increasing your activity and visibility on the platform through a daily engagement routine.

1. Share a Daily Status Update

Keep active and visible by posting a status update daily and engaging with your connections’ posts and articles in your newsfeed. LinkedIn encourages users to use specific hashtags in their posts and searches. It’s important to find hashtags relevant to your followers’ interests before you start adding them to your LinkedIn posts. It’s a good idea to observe what hashtags others in your advocacy area use on LinkedIn, as well as on other social media platforms such as Twitter and Instagram.

2. Share A Video

With LinkedIn native video, you can record a video inside the app or upload a pre-made video from your camera roll. This feature is available only on mobile, so download or update the app to make sure you have the latest version.

Tip: Go Live. In the short-term, native video on LinkedIn is still a novelty and presents an opportunity for you to stand out. With live video, you can broadcast content directly to your profile, so you can interact with your audience in real-time, drive deeper engagement, and establish your thought leadership. You will need to switch on Creator mode to be able to record live video. Here’s how to do this

3. Mention People in Your Posts

Mentioning a connection encourages engagement with your posts and comments. To mention someone in a post: Type “@” and then begin typing a name in the box.

4. Engage With Comments

Pay attention to everyone who takes the time to leave a comment on something that you post. Each time someone likes or comments on your post, their network can see it, thereby increasing the visibility of your post. When people are liking, sharing, and commenting on your posts, this acts as “social proof” to your network and beyond.

5. Nurture Relationships

Nurture your LinkedIn relationships through regular engagement. LinkedIn will notify you of trigger events (such as when one of your connections starts a new job). Take a moment to reach out to them with a personalized message of support.

6. Participate In LinkedIn Groups

Join groups on LinkedIn and start a conversation or comment on what is posted there. You will find groups by clicking on Interests > Groups from your profile or searching keywords to identify groups with interests similar to yours.

7. What You Share Matters

What you post on LinkedIn will establish you as a credible authority in your field. The key is to share relevant news, articles, and insights with your connections. Consider the type of content that will be most useful to your followers. As a thought leader, your goal is to consistently share your unique perspective on the most important industry topics.

8. Post Content At Optimal Times

Finally, be strategic about when you post. As a general rule, LinkedIn users are most active right before and after work (7-8 am and 5-6 pm), as well as during lunchtime. Experiment for yourself. Post at different times and take note of which times your particular audience is most engaged with you.

Internet Access, Digital Literacy, and Bridging the Digital Divide

In the modern healthcare era along with navigating COVID-19 infection concerns, Internet service and digital literacy are more important than ever for cancer patients and their loved ones. Telemedicine serves cancer patients with multiple benefits, some of which include protecting them from infection and virus risks, providing easy ways to refill prescriptions, schedule appointments, and view test results; and reducing time, costs, and stress of traveling to and from appointments. 

Internet Access, Digital Literacy, and the Digital Divide

Yet cancer patient advocates must look closely at Internet access, digital literacy, and the digital divide to support more underserved patients. A recent National Cancer Institute study of cancer patients and caregivers showed that 90 percent had Internet access, and 82 percent owned a smartphone. While these statistics look promising, there is still more work to be done to help underserved patients. Examining results from a recent study of rural cancer survivors reveals a digital divide. Medicare-covered cancer survivors in rural areas had telehealth availability 53 percent of the time compared to 63 percent in urban areas. Rural cancer survivors are also less likely to own desktop computers, laptops, smartphones, or tablets at a rate of 67 percent versus urban cancer survivors at 82 percent. Internet access also needs improvement with Medicare-covered rural cancer survivors at 58 percent access versus 79 percent in urban areas. 

Furthermore, Black and Hispanic survivors had lower technology ownership, with 65 percent of Black survivors and 67 percent of Hispanic survivors owning a desktop computer, laptop, smartphone, or tablet versus 82 percent of white survivors. “Despite the potential of telehealth to meet the unique healthcare needs of cancer survivors (e.g., surveillance, comorbidities, primary and survivorship care), some patient groups face greater barriers to technology access,” the study authors wrote. “These patterned differences in use and access underscore a need to engage multilevel interventions to mitigate the underlying barriers to telehealth use.” 

U.S. Financial Support of Digital Healthcare Access

What can vulnerable cancer patients do to improve their situation if they’re lacking in Internet service or technology literacy? Fortunately, President Biden has put racial equity at center stage of his agenda and is working to end disparities in healthcare access and education. The  Coronavirus Aid, Relief, and Economic Security (CARES) Act helped provide telehealth and connected care services to patients, and the proposed infrastructure bill could help extend support. The U.S. federal government has taken action to help those in need of Internet service or improved Internet service. As part of the Bipartisan Infrastructure Law, President Biden and Vice President Harris operated with Democrats, Republicans, and Independents to create the Affordable Connectivity Program (ACP), as part of the Bipartisan Infrastructure Law. The ACP provides eligible households with a high-speed Internet plan for no more than $30 per month. The Biden-Harris Administration has received commitments from some leading internet providers to offer ACP-eligible families who pair their ACP benefit with one of these plans to receive high-speed Internet at no cost. You can easily check to see if you qualify here.

Digital Literacy Training

For those looking to improve their digital literacy, Patient Empowerment Network can help people build their skills. The PEN digital sherpa™ Program and Digitally Empowered™ Course help cancer patients (mainly 65 and older) and their families become better prepared for their cancer journey. The goal is for participants to learn to use technology to their advantage and to become more tech-savvy. The program’s workshops help educate patients and care partners in basic Internet and social media skills to help them in their search for information about their illness and support resources for themselves and their families.

University students, known collectively as “sherpas,” have been specially trained by the Patient Empowerment Network to offer technology skills and are paired with program participants. The sherpas empower patients and care partners by training them in skills such as: 

  • Safely navigating online healthcare resources
  • Finding credible online resources
  • Forming online disease support communities
  • Using telemedicine
  • Navigating your health with social media
  • Using rideshare and wellness apps
  • Following and connecting with experts online

The Digitally Empowered Course opens access to a whole new world of knowledge and tools to assist you in researching your condition, asking informed questions, and taking an active role in shared decision-making with your care team. The 10-module Digitally Empowered course trains participants in:

  • How to access the Internet
  • Identifying credible resources and websites
  • The benefits of your patient portal
  • Using social media to connect and learn
  • Navigating your health with mobile devices
  • Apps to use for convenience and fun
  • How to use telemedicine
  • Accessing and joining online support communities

The pandemic brought some issues to light about gaps in Internet service and digital literacy. But vulnerable and underserved cancer patients and their loved ones no longer need to remain in that state. They now have options to move them toward becoming empowered and informed. 

Empowered and tech-savvy patients have the ability to build more support for themselves and to build knowledge and confidence. With increased confidence, patients feel more at ease to ask questions when they interact with their healthcare team members. This fortified knowledge and confidence then empowers them to make more informed decisions for optimal health outcomes and improved quality of life for patients. These results make a clear win-win for formerly underserved cancer patients and for those who work to support these patients.


Sources

https://mhealthintelligence.com/news/rural-cancer-survivors-report-low-telehealth-availability-internet-access

https://pubmed.ncbi.nlm.nih.gov/34428075/

https://www.whitehouse.gov/getinternet/?utm_source=getinternet.gov

How Medical Financial Hardship Can Affect Your Health

How Does Your Finances Affect Your Health?

In 2002, my husband was diagnosed with MGUS, a precursor to Multiple Myeloma. As many of you have also experienced, your life changes. At diagnosis, you probably felt you couldn’t breathe or process. All you could think of for days was cancer, cancer. And if you have been unfortunate enough to witness someone else in your family or close circle of friends with cancer you could only relate to their experience or what you thought their experience was. Good or bad..

I’ve witnessed too many people in my family battle cancer. My brother with leukemia, my father with lung cancer, my great grandfather with prostate cancer and my husband with multiple myeloma. I watched my parents struggle with the cost of his care. My mother was the caregiver to my father and stopped working to care for him. That was difficult for her because her sustainable income became almost non-existent. Fortunately, it came at a time when all but one of my seven siblings were independent and on our own. This at least was less responsibility for my mom and dad to worry about. However, because he was in the hospital a lot, and she no longer had income coming in, we all covered her daily expenses, food, mortgage, gas, water, purchased her a more reliable car, home repairs etc. We became her failsafe. Many people are not so fortunate.

My mother never spoke of the emotional or financial stress of everything to any of us, but we knew it had to be difficult. We saw the strain on her health. Her weight changed. She had trouble sleeping. Her blood pressure soared and her arthritis was always troubling her. More so than usual. My siblings who lived near would spend time helping her care for dad, and within a week of his death she had to take care of her mother who was an amputee and had Alzheimer’s.

So, it’s really not at all surprising to learn that medical financial toxicity or stress could be linked to worst cancer survival. The effects are many. Unfortunately for those who live in rural areas, have low incomes, those who are minorities, the underinsured or uninsured you already have financial stress. An expensive illness like cancer makes it all the more difficult.

My husband had great insurance from his employer. I thought at first we wouldn’t have to worry about medical bills. That is until he was at first approved for coverage for a stem cell harvesting and transplant in another hospital out of network, because there wasn’t a specialist in KY. Right after the transplant we were told treatment wasn’t going to be covered by his insurance.. After 5 weeks in the hospital!!! He became very despondent and depressed could not eat or sleep. He began to suffer with other emotional and physical issues unrelated to the illness itself. Additionally healing from the transplant was difficult. Lesson learned, having good insurance does not shield you from financial stress.

An analysis of 25,000 cancer survivors showed that financial hardship had a significant association with premature death among cancer survivors, no matter their insurance coverage. And according to K. Robin Yabroff, PhD, MBA, of the American Cancer Society in Kennesaw, GA and colleagues, almost 30% of patients ages 18-64 reported financial toxicity, which is associated with a 17% excess mortality risk compared with same-aged patients who did not report medical hardship.

In older patients, they found that financial hardship was less common with a 14% excess mortality risk. Having insurance did reduce the risk but not by much and certainly didn’t eliminate it.

An earlier study in the Journal of the National Cancer Institute found an increased mortality risk in cancer survivors who filed for bankruptcy. Though the number filing was low, medical financial hardship covers a range of economic stressors.

Some of the financial hardships associated with financial stress included; patients not adhering to or even forgoing treatment. Having problems paying for expensive prescriptions could lead to not taking medicine as prescribed to make it last longer or not getting it filled at all, In addition mental health counseling and other health issues are neglected.

How to mitigate a lot of the financial stressors that can lead to higher mortality?

Understand your illness and all aspects of your treatment. Ask your doctor to refer you to someone in the facility who can help you find financial assistance to help you manage the costs of your care and help you manage your everyday expenses. A quick google search can help you locate local, state and federal resources that may be available to you. Seek out help from organizations such as American Cancer Society, Leukemia and Lymphoma Society. There are many others. Get help with finances and budgeting CoPatient is a great organization that can determine of medical bills over $500 are accurate and fight that battle for you. Triage Cancer is a great resource to help you understand legal, and insurance information based on your state of residence.

The main takeaway is, you need to focus on healing and staying healthy. Seek out help regarding your finances so that you won’t find yourself in a financial crisis. Support groups are great sources of information.

Don’t be afraid to ask. Your health depends on it!

Five Ways the PEN Empowerment Lead Program Can Support Your Cancer Journey

Our Empowerment Lead program is here to support patients and families around important topics and to provide navigation for the path to empowerment. Our Empowerment Leads are highly passionate empowerment ambassadors volunteering from around the U.S., engaging with the PEN network of cancer patients and care partners, and serving as a direct channel of empowerment.  

1. Utilize the PEN Text-Line

By texting EMPOWER to +1-833-213-6657, you can meet someone with your same condition  and  receive personalized support from our Empowerment Leads. Whether you’re a cancer patient, or a  friend or loved one of a cancer patient, PEN’s Empowerment Leads will be here for you at every step of your journey.

2. Watch PEN Videos

Taking a proactive role in your well-being as a patient is of utmost importance for optimal health outcomes. And PEN videos are a trusted source when seeking out information from cancer experts, patients, care partners, and PEN Empowerment Leads. Whether you’re a newly diagnosed patient, care partner, long-time cancer patient, or other concerned patient advocate, PEN videos provide a valuable way to learn about cancer patient stories, testing information, questions to ask your cancer specialist, how to support and be supported as a care partner, ensuring that your patient voice is heard, and more.

3. Read PEN Blogs

Our PEN blogs are a rich source of support information on a wide range of topics for cancer patients and care partners. The blogs serve as another way to gain knowledge and advice for navigating and coping with your cancer journey. Some recent topics have included mental  health advice, financial support resources, nutrition and exercise tips, COVID-19 vaccine guidelines, patient stories, caregiver advice, genetic testing, and cancer news updates.

4. Download and Use Our Activity Guides

Initiated as a patient and care partner tool at the beginning of the COVID-19 pandemic, our PEN-Powered Activity Guides continue as a way to stay connected and to relieve stress during your cancer journey. Packed with information and support resources, the Activity Guides provide content including clinical trial information and experiences, patient stories and lessons learned, advice from care partners, healthy recipes, music playlists, coloring pages, and more. If you’re a busy cancer patient or care partner, the Activity Guides are easy to print to take with  you to read during travel and waiting room time for cancer care appointments.

5. Learn About Our PEN Empowerment Leads

If you don’t have time to watch a video or to read a blog right away, you can browse our list of PEN Empowerment Leads. You can easily see the community that each Empowerment Lead serves  and read a short bio about their experience as a cancer patient or care partner.

By taking advantage of our PEN Empowerment Lead resources, cancer patients and care partners can gain knowledge and confidence to navigate their own cancer journeys.

There’s an App for That…Or There Should Be: Utilizing Technology for Better Health Outcomes

Health literacy has always been a passion project of mine ever since I was diagnosed with cancer. I stand by the notion that plain language and clear communication leads to better health outcomes. However, communicating with our care team isn’t always easy. How many of us have gone into an appointment only to leave the office 10 minutes later, wondering what happened and what our copay went to? Were all of our issues and questions addressed? 

This is where we have to come in as advocates for our own health, and below are a few ways to do this: 

  • Try and focus on one ailment per appointment 
  • Write down a list of questions you want addressed prior to the appointment 
  • Ask questions during the appointment – you are the expert of your body and health 
  • If something doesn’t make sense, ask for the information to be explained in another way. Patients are found to be more compliant if they know: 
    • How to take their medications properly 
    • Why specific blood tests and imaging are ordered (i.e. if they’re necessary) 

How do we keep track of all of this information, though? There are patient portals that keep track of our appointments and records, but those can often be hard to navigate, and they lack the capability of being able to enter our own information (i.e. about how we’re feeling). Additionally, different health systems have different portals, leading not only to lost passwords, but a missed opportunity for integrated healthcare. This is essentially senseless for cancer patients who have to keep track of multiple appointments and medications, all while trying to keep afloat in a system that wasn’t built for patients and their caregivers. 

However, there’s a role technology can play here. I’ve heard of patients carrying around large binders of their records from appointment to appointment, but if we’re being honest, I don’t believe a physician or other member of a patient’s care team is going to take the time to go through it. Instead, utilizing the power of the device that we’re constantly carrying around and looking at may be the way to go (in addition to a smaller folder or journal for those that are comfortable with paper). 

If we think about it, there’s an app for everything, and having an app to keep track of our cancer journey should be no different. What should this app be able to do? Here are a few things that I think are especially important: 

  • Keep track of: 
    • Medications (dosage, picture of what it looks like, how to take it and what to do if you accidentally miss a dose or take more than what is prescribed, ability to refill) 
    • Blood work (results and what they mean [featuring a scale of what’s low vs. normal vs. high], what to ask your doctor about in terms of next steps) 
    • Imaging (results and what they mean, what to ask your doctor in terms of next steps) 
  • Ability to connect with all members of your care team (primary care doctor, oncologist, nurse navigator even if they work in different health systems) 
  • Ability to connect with caregivers and share information with them 
  • A diary to describe daily thoughts, symptoms, and side effects, flagging specific keywords that can alert a member of your care team 
  • A calendar with appointments (date/time, office location, directions) 
  • Tips to assist with mental health (i.e. offering local or national support groups [both virtual and in-person], counseling that accepts insurance and/or is offered on a sliding scale) 
  • Exercise routines featuring different forms of exercise (yoga, pilates, HIIT, weightlifting, playing a sport, walking and running, etc.) based on you’re feeling side effect- and energy-wise 
  • Information about nutrition through the different phases of a cancer journey (pre-treatment vs. in-treatment vs. post-treatment) that includes recipes 
  • Most importantly, all of this information should be in plain language that’s easy to understand in whatever language the patient is most comfortable reading 

Having an app that features all of these capabilities, I believe, would push the needle forward in patient care, not only creating better health outcomes, but a more satisfied patient. What would you add to the list? 

Transportation Solutions for People With Cancer Who Can’t Drive

For people with cancer, transportation can be a major issue. While everyday trips like going to the store or running errands can be difficult enough, transportation becomes a bigger issue when you have to get to your medical appointments and treatment solutions.

Not having access to adequate transportation can hinder your recovery and add stress, making it even more difficult to stay strong and maintain a positive attitude throughout treatment.

Thankfully, even if you don’t have a vehicle or aren’t able to drive yourself, there are resources you can reach out to and options to consider when you need transportation. Your quality of care shouldn’t depend on whether you can drive. Let’s cover a few of those solutions, so you’ll never have to miss an important appointment or experience a lesser quality of life.

Why You Shouldn’t Drive

As many as 30% of people with cancer skip their appointments regularly. One of the biggest reasons why is a lack of transportation. That doesn’t necessarily mean you don’t have access to a vehicle or don’t know how to drive. But, your diagnosis and/or treatment could make it difficult or dangerous to get behind the wheel on your own, and you may be hesitant to ask someone else for help. If you’re going through radiotherapy or chemotherapy, it’s not uncommon to experience symptoms like

  • Fatigue
  • Nausea
  • Vomiting
  • Impaired motor skills
  • Difficulty concentrating

Obviously, it’s not a good idea to get behind the wheel if you’re struggling with any of those problems. Treatment impacts everyone differently, so until you know which side effects impact you the most, it’s a good rule of thumb to have someone else drive you to and from your appointments.

Even certain medications can impair your driving ability, so you might need to rely on someone to help you with everyday errands, too. If you’ve had “near misses”, multiple accidents, or multiple traffic warnings or citations, it’s a good indicator that it’s time to stop driving yourself until you’re off certain medications or until you’re able to build your physical and mental strength.

Reach Out to Resources

One of the best ways to find transportation to your appointments is by utilizing resources specifically designed for people with cancer. The American Cancer Society’s Road to Recovery program is one of the most popular transportation solutions. It offers free transportation to and from appointments, and all you need to do is visit their website and provide information about your location and schedule.

If you’re not able to find a Road to Recovery driver near you, consider reaching out to local church groups or the hospital you use for your treatment. Often, they will have volunteers or special services designed to provide transportation for those in need. While they might not be limited to people with cancer, as long as they are a trusted organization and are willing to work with your schedule, these are great resources to keep in mind.

Finally, reach out to your insurance company. Some companies reimburse people in need for any fares they might have to pay on public transportation, while others have programs that provide rides to their clients if there are no other options.

Utilize Technology

We haven’t officially perfected self-driving vehicles yet, but it’s coming! Learning more about the technological advancements in the auto industry can help you look for better safety features in your next vehicle, including things like

  • Lane assist
  • Blind spot detection
  • Parking assist

Some vehicles will even brake automatically if they sense a potential collision, which can be a huge help if you’re having trouble focusing or you’re tired after a treatment. Using technology to make driving safer and easier for you can build your confidence if you have no other choice but to transport yourself. However, technology isn’t perfect and there are still risks involved. If possible, it’s still safer to have someone else transport you while you’re undergoing treatment.

To that end, you can use ridesharing apps to help you get to your appointments. Uber created a dashboard specific to healthcare organizations that allows them to schedule car rides for patients. UberHealth gives providers the opportunity to coordinate rides for patients who might otherwise not have access to transportation. The Patient Empowerment Network’s digital sherpa™ program teaches cancer patients tech skills, including how to use ridesharing apps like Uber and Lyft. Thus, patients using the program always have access to transportation.

If you truly have no other transportation options, you can use technology to your advantage by utilizing telehealth. While some appointments will always need to be in person, including radiotherapy or chemotherapy treatments, you can practice better self-management and improve remote monitoring by connecting with your doctor online. Many physicians have their own digital portals, but even a video call can ensure you and your medical team are on the same page when it comes to your treatment.

Transportation difficulties should never keep you from getting the treatment you need. Keep these solutions in mind to keep yourself safe as you drive to and from appointments, and consider reaching out to family members or friends who might be able to help, too. You’re never going to burden someone with your request, and a lack of transportation shouldn’t be a reason to skip out on the treatments you need to beat the disease.

March 2022 Notable News

With all the research done in the field of oncology, we are still learning about the negative impact the pandemic has had on cancer patients. Covid has taken a toll on everyone, but it has hit cancer patients especially hard. March also brings some positive news, an exciting discovery that could lead to important advances in pancreatic cancer treatments. Finally, man’s best friend is also contributing to cancer prevention and cancer screening.

Covid’s Effects on Cancer Care

Cancer patients are more prone to severe coronavirus disease, some do not respond as well to COVID-19 vaccines, and they face delays in diagnosis and treatment due to the pandemic reports CancerHealth.com . During the pandemic and quarantine, people missed screening opportunities, and this is causing an increase in later stage cancer diagnosis. Patients with lung cancers and blood cancers are at a higher risk of having a more severe case of Covid and do not respond well to the vaccine. Cancer patients also face delays in needed treatments during the pandemic. Another negative impact of Covid is the toll it takes on a patient’s mental health due to isolation and financial stress. Racial minorities and people with lower incomes have been hit the hardest during the pandemic. Finally, cancer research has been negatively affected due to labs closing and clinical trials getting delayed. As a nation, we need to look at the toll Covid has taken on the field of oncology and make changes to lessen the impact of a pandemic in the future. Find more information here.

Molecule Discovered that Can Kill Pancreatic Cancer

A research team led by scientists at Roswell Park Comprehensive Cancer Center has discovered a molecule that inhibits the growth and metastasis of pancreatic cancer cells through the iron metabolism pathway reports MedicalXpress.com . This molecule works on iron metabolism to kill the cancer cells and proteins that cause cancer growth. A door has now opened for development of a new pancreatic cancer treatment. Pancreatic ductal adenocarcinoma (PDAC) cells have mutations that make it difficult to treat with chemotherapy. This molecule causes ferroptosis, cell death triggered by iron, in PDAC which can lead to new and effective treatments. Find more information here.

Dogs Help Sniff Out Cancer

Cancer cells give off a specific odor—traces of which can be detected by dogs through human urine, breath, skin, sweat, and feces, reports HealthDigest.com . Dogs can smell this odor before the cancer spreads, allowing for early detection. Currently, there is an eight month long intensive training for detection dogs. The canine scent detection will be used as a screening tool. Research is being done as to what biologic compounds the dogs smell and then screening tests can be created based on those compounds. Find more information here.

Finding Value in Your Care: Take Action Checklist

1. Am I getting the best care or even offered the best?  

  • Is the care appropriate for my age? My condition?
  • Am I being given more than one option, if at all possible, with the pros and cons explained to me?
  • Is my provider willing to recommend me to a colleague for a second opinion if I feel that I need one?
  • Does my healthcare provider care for me as an individual or do I feel lumped together with other patients?
    • Do I feel comfortable asking questions? 

2. Are the ordered scans and blood work helping me in my care or are they ordered “just because?”

  • Does my provider explain the reasoning behind these orders (i.e. what information we’re looking for, how this will help progression of my care, etc.)?
  • When the results come back:
    • Do I have access to them? If so, are they easy to find?
    • Are they explained to me in a way that makes sense?

3. Is insurance providing me coverage or am I consistently receiving denials/is my provider having to do a peer-to-peer? 

  • Does my coverage make sense?
    • Are providers transparent about how much something may cost?
  • Are terms explained?
  • Can I easily receive access to a care representative?

4. Does my employer offer benefits that fit what I need? 

  • Health insurance 
  • Short-term and long-term disability 
  • Options for FSA and/or HSA accounts 
  • Employee assistance programs 

5. Are the medications that are prescribed working as intended? 

  • Do I understand how to use them correctly? 
  • Do I feel comfortable telling my doctor if I have any side effects and need to switch to something else? 
  • Are they affordable or are there alternatives? 

6. Is a patient portal available and easily accessible? 

  • Is it easy to find what I’m looking for? 
  • What capabilities does the portal have?
    • Can I message my provider?
    • Can I view lab and imaging results?
    • Can I schedule appointments and see upcoming appointments?
    • Can I see visit summaries of previous appointments? 

February 2022 Digital Health Round Up

Technological advances show promise in the areas of cancer prevention, diagnosis, and treatment. During the pandemic, the virtual visit was introduced to adapt to the changing needs of healthcare. Healthcare providers and patients have demanded that telemedicine evolve to provide for an effective patient experience. Providers are harnessing the power of technology to make a less invasive way to diagnose colon cancer, which is the 2nd leading cause of cancer deaths in the United States. Two Squadrons at Keesler Air force base are joining forces and using digital health technology to make radiation therapy for cancer patients safer and more precise.

The Virtual Visit

This trend is here to stay; 76% of Americans indicated that they plan to use telehealth either more or at the same rate, even after the pandemic subsides, reports MedCityNews.com . To provide “distributed care” or care that is brought to the patient instead of the patient going to the care. It requires data and artificial intelligence (AI) to drive the digital health experience.  Healthcare providers use data and clinical history to create a strong patient relationship. The digital interaction is documented and can be shared with other providers to provide continuity. Providers create easy to use platforms to make appointments, view records, and link to the virtual visit all from one site. Telemetry tools are available to monitor patient conditions at home and use diagnostic tools to input for AI algorithms. Insurance companies and Medicaid offer billing codes and reimbursement for virtual visits. There are guidelines in place for data governance to insure patient privacy. Find more information here.

Cancer Detecting Pill

The Colon Capsule Endoscopy device, or Pillcam, passes through the digestive system taking 50,000 pictures of the bowel on its way, reports BBCNews.com . This pill camera requires the same preparation as a colonoscopy and has been used on its 2000th patient in Scotland. The pill still must be swallowed in the hospital setting but the patient can go home as it passes through their system. The patient wears a recorder on their waist to record the images.  Many patients have a fear of having a colonoscopy and avoid getting the procedure done. The Colon Capsule Endoscopy device is less invasive than a colonoscopy, it’s painless, and there is no sedation required.  Pillcam allows for early detection of colon cancer and therefore the patient gets treatment faster. Find more information here.

Customized Care for Cancer Patients

In an effort to make radiation therapy for cancer patients more accurate and effective, the 81st Diagnostic and Therapeutic Squadron joins forces with the 81st Dental Squadron to shape radiation bolus for each patient, reports WXXV25.com. They use digital dentistry software in combination with 3D Printers to help cancer patients by making an artificial surface specific to each patient.  This artificial surface acts as a barrier, allowing the radiation to work, as well as make the radiation bolus specific to each case. During the radiation bolus, the machine scans the patient’s face creating a custom prosthesis that can be used every time there is a treatment. This process makes the radiation therapy more precise and safer for the cancer patient. Find more information here.