Baked Avocado Tacos

Baked Avocado Tacos from Patient Empowerment Network on Vimeo.

Ingredients:

Tacos

  • Oil for spraying pan and avocados
  • 2 large, ripe avocados, seeded and peeled
  • ¾ cup (175 mL) panko bread crumbs
  • ½ tbsp (7 mL) chipotle rub
  • 10-12 corn or flour tortillas

Slaw & Sauce

  • 5 oz (150 g) radishes, trimmed
  • 1 medium carrot, peeled and cut into thirds
  • ½ lime
  • ⅓ cup (75 mL) fresh cilantro leaves
  • ½ cup (125 mL) 2% plain low-fat Greek yogurt
  • ⅛ tsp (0.5 mL) salt

Recipe

  1. Preheat the oven to 450°F (230°C). Spray pan with oil
  2. Cut the avocados into slices. Lay the avocado slices on a cutting board.
  3. Combine the panko and rub in one tray. Lightly spray the avocado slices with oil. Dip 4–5 avocado slices at a time in the panko mixture and coat on both sides.
  4. Place the avocado slices on the pan and bake for 10–12 minutes, or until they’re light golden brown and crispy.
  5. For the slaw, grate the radishes and carrot into a small bowl.
  6. Zest the lime to measure ½ tbsp (7 mL) and set it aside. Juice the lime. Grate the cilantro. Add the lime juice and 1½ tbsp (22 mL) of the cilantro to the mixing bowl. Toss to combine.
  7. For the sauce, combine the Greek yogurt, lime zest, salt, and remaining cilantro in a small bowl.
  8. Transfer the pan from the oven to a cooling rack. Wrap the tortillas in a damp paper towel and microwave for 30 seconds, or until warmed.
  9. Spread the sauce onto the tortillas. Place 2 avocado slices on each tortilla and top with slaw.

History of Avocado

Experts believe that avocados – from the Persea americana tree – originated almost 10,000 years ago in the South Central state of Mexico called Puebla. And researchers think that domestication of the avocado tree to grow avocados occurred around 5,000 years ago. Along with its value as a food source, avocados were also prized for their perceived ability to provide mythological powers in ancient Aztec culture. Avocados were later introduced in the 1500s to the people of Europe by Spanish explorers who encountered them in North America, Central America, and South America.

Medical Properties of Avocado

Avocados are packed with vitamins, minerals, antioxidants, fiber, and healthy fats – including vitamin K, folate, vitamin C, vitamin B5, vitamin B6, vitamin E, potassium, monosaturated fatty acids, lutein, and zeaxanthin. The oleic acid contained in monosaturated fatty acids in avocados are linked to lower inflammation in the body and positive effects on genes associated with cancer, and potassium supplied by avocados is connected with reduced blood pressure. Avocados are touted for being heart-healthy with studies linking them to reduced cholesterol and triglyceride levels. The fiber supplied by avocados – with 75 percent being insoluble fiber – aids in maintaining a healthy digestive system. Even the fat contained in avocados assists in the body’s absorption of fat-soluble vitamins like vitamin A, vitamin D, vitamin E, and vitamin K and with antioxidants like carotenoids. The carotenoids of zeaxanthijn and lutein in avocados have been connected to reduction in degeneration of eyesight and lower rates of cataracts. Avocados also contain glutathione, which aids in function of a healthy immune system.

Surprising Facts About Avocado

An average size avocado contains 9 grams of fiber, which is the most among all fruits. Avocados actually belong to the same plant family as cinnamon – Lauraceae, commonly known as laurels. Avocados contain more potassium than bananas – weighing in at 975 milligrams per avocado compared to 544 milligrams of potassium per banana. Avocados were known as alligator pears in the U.S. until the U.S. Department of Agriculture renamed them as avocados. The summer of 2017 was especially memorable in the history of the avocado when over 3 million avocado toast photos were uploaded daily to Instagram.


See all recipes from the Cook & Learn series here.

Lo que necesita saber antes de elegir un tratamiento contra el cáncer

Lo que necesita saber antes de elegir un tratamiento contra el cáncer from Patient Empowerment Network on Vimeo.


Dr. Jones:

Hola, Soy Doctor Jones y soy oncólogo y investigador. Me especializo en el cuidado y tratamiento de pacientes con cáncer.

Hoy, vamos a hablar sobre los pasos para acceder una atención personalizada y la mejor terapia para tu cáncer específico, y eso empieza con algo que se llama las pruebas del biomarcador.

Antes de empezar, quiero recordarte que este video tiene la intención de ayudar a educar a los pacientes de cáncer y sus seres queridos y no debería ser un reemplazo por consejo de su médico.

Empecemos con lo básico. Como si no hubiera dos huellas dactilares son exactamente iguales, no hay dos cánceres de pacientes son exactamente iguales. Por ejemplo, conozcamos a Louis, y otro paciente mío, Ben.

Los dos tienen el mismo tipo de cancer y fueron diagnosticados a casi el mismo tiempo. Pero cuando se ve de cerca, sus canceres se ven muy diferentes. y por lo tanto se deben de tratar diferentemente.

Podemos mirar más cuidadosamente al tipo de cáncer utilizando pruebas de biomarcadores, que busca mutaciones genéticas específicas, proteínas, anormalidades cromosómicas, y/u otros cambios moleculares que sean únicos a la enfermedad del individuo.

A veces llamado pruebas genéticas o pruebas genómicos. Las pruebas de biomarcadores pueden ser administrados a través de varias maneras. Como a través de un examen de sangre o un biopsia. Como se administran las pruebas dependerá de tu situación especifica.

Los resultados podrían ayudar a tu equipo de atención medico  entender como tu cáncer pueda comportarse y ayudar a planear el tratamiento, y pueda indicar si una terapia dirigida puede ser apropiada para ti. Mientras decidiendo si las pruebas de biomarcadores sean necesarias tu medico también tomará en consideración la fase de tu cáncer en el momento del diagnosis.

Louis:

Cierto. Mis resultados de las pruebas de biomarcadores mostraron que tenia una mutación especifica de gene y que mi cáncer pueda responder  bien a terapia dirigida.

Doctor Jones, ¿puede explicar como la terapia dirigida es diferente al quimio?

Dr. Jones:

Buena pregunta. A través de los últimos años, las investigaciones han avanzado rápidamente en desarrollar terapias dirigidas. Lo cual ha dado paso para opciones mas efectivas y mejores resultados para los pacientes.

La quimioterapia sigue siendo una herramienta importante para el tratamiento de cáncer. Y trabaja a través de afectar la habilidad que tiene una cedula de cáncer para dividir y crecer. Y ya que las cedulas de cáncer típicamente crecen mas rápidas que las cedulas normales, la quimioterapia tiene mas probabilidad de matar a las células de cáncer.

La terapia dirigida, por otro lado, trabaja bloqueando mutaciones especificas, y previniendo que las cedulas de cáncer puedan crecer y dividirse.

Estas terapias más nuevas están actualmente siendo utilizadas para tratar muchos canceres de sangre, y a su vez canceres de tumores solidos. Mientras consideras los tratamientos es importante tener toda la información sobre tu diagnosis, incluyendo los resultados de los exámenes de biomarcadores para que puedas discutir tus opciones de tratamiento y metas con tu equipo de atención medica.

Louis:

Exactamente. Doctor Jones me hizo sentir que tenia una voz en mi decisión de tratamiento. Discutimos cosas como  efectos secundarios posibles, como se ve el curso de tratamiento, y como puede afectar a mi estilo de vida.

Cuando te reúnes con tu equipo de atención medica, insiste que te respondan todas tus preguntas. Acuérdate, esto es tu vida, y es importante que te sientes cómodo y incluido cuando este tomando decisiones de salud.

Dr. Jones:

Y si no te sientes que tu voz está siendo escuchada, pueda que sea el momento para considerar una segunda o tercera opinión de un doctor que especializa en el tipo de cáncer que tienes.

Así que, ¿cómo puedes utilizar esta información para acceder tratamiento personalizado?

Primer, recuerda, no hay dos canceres iguales. Lo que pueda funcionar para el cáncer de otro,puede que no funcione para ti.

Después, asegúrate preguntar si la prueba del biomarcador es apropiado para tu diagnosis. Luego, discuta todos tus resultados de las pruebas con tu proveedor, antes de tomar una decisión de tratamiento, y pregunta si se necesitará repetir las pruebas a través del tiempo, para identificar biomarcadores adicionales.

Lo que escoges para tu tratamiento debe ser una decisión compartida con tu equipo de atención medica. Discuta cuales son tus opciones y metas de tratamiento con tu doctor.

Y por ultimo, pero no menos importante, es importante preguntar si una terapia dirigida o un ensayo clínico puede  ser apropiado para ti. Los ensayos clínicos puedan proveer acceso a nuevos tratamientos prometedoras.

Louis:

Todos son buenos puntos, Doctor Jones. Esperemos que puedas poner a trabajar esta información para ti. Visite powerfulpatients.org para aprender más consejos de como abogar para ti mismo.

Dr. Jones:

Gracias por estar con nosotros hoy.

Is There Value in Seeking a Second Opinion?


Is There Value in Seeking a Second Opinion from Patient Empowerment Network on Vimeo.

Empowered myeloma patients, Honora Miller and Barry Marcus, share the importance of getting a second opinion and how to navigate if you are reluctant to ask for another physician to review your case.


Transcript

Barry Marcus:

I sought out a second opinion right after my initial diagnosis, I knew very little about multiple myeloma when I was first diagnosed, and as I just mentioned, I didn’t have a lot of confidence in the doctors in my initial HMO, so I wanted to make sure just for myself and for the future, whether what they were proposing as a treatment plan made sense for me, and so I did seek out a second opinion and I was so glad that I did. It did give me a little bit more confidence in what the initial HMO was proposing because the doctor that I saw, said, Yeah, this is the correct thing to do for you. Now, since I’ve been with the same oncologist now for a number of years, I have gotten second opinions on things that he’s told me I wanted to do, and I did have to overcome my initial reluctance to do that for kind of fear of hurting his feelings or thinking that maybe he wouldn’t like me as much after that, but in speaking with many of the infusion nurses, they say it’s quite common and the doctors don’t mind at all, and it’s really something that I need to do to feel like I’m getting the best course of treatment.

Honora Miller:

I have found too that in speaking with people that same reluctance around not wanting to hurt feelings, but indeed the doctors themselves, I’ve have talked about it directly with my doctor, it’s so common at a practice. It’s just part of their world. Of course, we don’t know that and we’re trying to be sensitive, but they’re not concerned about it at all. In fact, even changing doctors, they don’t even blink at it because they’ve got so many patients that they don’t concern themselves when you decided to move on to a different doctor, ’cause I have changed doctors when I didn’t feel like it was the right fit, oncologists, and that has been a really good thing to do when I didn’t feel comfortable.

When I didn’t feel, I guess it was as a result of COVID, it kind of gave me like another lens to look at my relationship with my doctor and my comfort level, ’cause I’ve had several oncologists, several of them have moved on. Once I realized, okay, this is living with myeloma during COVID, do I feel comfortable with this oncologist being my doctor that I was realizing, no, okay, I need to switch doctors till I feel comfortable, and I did get a referral within the same practice of a different oncologist, and I’m so happy that I did that, ’cause it makes all the difference.

We communicate much more easily, and I feel like if anything goes on with COVID, like I could rely on him to make some good decisions around my health.

Barry Marcus:

One of the things that I’ve come to realize is that treating myeloma is just as much an art as it is a science, and there is no one-size-fits all for any patient, and if I get a suggestion from a second doctor, I bring it back to my primary oncologist, he’s been very accepting of it and willing to consider making some changes maybe that I got from seeking out a second opinion. So, I feel like I’ve been fortunate in that.


Read the Full PEN-Powered Activity Guide VI

How Does COVID-19 Create Sleep Issues for Cancer Patients?

Are you having sleep problems during the COVID-19 pandemic? A recent Swiss study showed that people’s sleeping hours are more regular during the global crisis, but self-reported sleep quality has decreased, according to Science Daily. Besides that, some groups like cancer patients are more likely to experience sleep deprivation during such challenging times.

There are several factors that might affect the sleep quality of people diagnosed with cancer. They include the diagnosis, cancer treatments, medical bills, and an uncertain future. Stress and anxiety due to coronavirus disease can also cause a disruption of everyday schedules. Sleep disorders themselves can worsen cancer symptoms, which creates a vicious cycle.

Cancer Survivors and Sleep Disorders

Getting a good night’s sleep can already be tough for cancer patients. Studies show that over three-quarters of people with severe disease have sleeping problems, according to the Cancer Treatment Centers of America.

The good news is today’s scientists and physicians have a better understanding than in the past about how sleep works and how to improve sleep quality.

Sleep provides many health benefits for overall physical, mental, and emotional health. This is especially true for people battling severe diseases like cancer. For example, it can boost your body’s immune system, which makes it more effective at fighting off cancer cells.

On the other hand, lack of sleep can have the opposite effect. This can weaken the immune system and slow down recovery from sickness or injury. Serious sleeping disorders can also create an imbalance of the cell-impacting hormones cortisol (stress hormone), and melatonin (sleep hormone).

Sleep: Its Influence on People Living with Cancer (video)

Other Effects

Besides affecting cancer cells and tumors, poor sleep can also have other negative effects related to:

  • Obesity
  • Diabetes
  • Heart disease
  • Heart attack/stroke
  • Mental health
  • Sleep

One theory is that melatonin might be the root cause that affects these health conditions and episodes. However, more research is needed. The body normally produces more melatonin at night as it gets dark outdoors and the human body winds down for rest and repair.

COVID-19 and Sleep Problems

Fun Fact: The acronym COVID-19 stands for corona (CO), virus (VI), disease (D), and 2019 (19). There are various possible factors related to the global epidemic that might affect people’s sleep, even if they haven’t tested positive for respiratory disease:

Anxiety, Stress, and Depression

The ongoing COVID-19 outbreak has become a global financial crisis that could cost the United States alone $16 trillion, according to the Los Angeles Times.

Quarantines, layoffs/furloughs, and school closures have caused stressful situations for people, and it’s even worse for those with severe diseases like cancer.

Even indirect factors like COVID updates have created more stress and duress. This is why it’s important to avoid reading or watching daily news after 7 PM or so. Negative news can affect your psyche and make it tougher to doze off at bedtime. A better option is good news.

Disrupted Daily Doings

The “new normal” during the ongoing pandemic might affect the quality of sleep. More stay-at-home time can cause wholesale schedules in daily schedules. That, in turn, can result in a sedentary lifestyle of sitting down and fewer gym workouts. This can negatively affect sleep unlike the option to make the right selection of mattress.

Blue Light

Studies show that blue light from sources like computer monitors, mobile devices, and fluorescent light bulbs can disrupt people’s sleep patterns.

Besides that factor, people might have more screen time during quarantines and lockdowns as they use their PCs/Macs, tablets, and smartphones to get COVID updates

and interact with friends and family. This can increase the risk of tossing and turning due to insomnia.

COVID-19, Sleep, and Cancer: It’s Complicated

As noted, several factors can negatively affect the sleep quality of cancer patients. When you add factors like a worldwide pandemic to the mix, this situation becomes ultra-complex.

Coronavirus and Sleep

The ongoing COVID-19 crisis isn’t just about the contagious virus itself, which makes it a whole lot more serious than a sleepless night when counting sheep and a warm glass of milk doesn’t seem to work.

Here’s the problem. Your ability to fall asleep and stay asleep during a pandemic probably isn’t related to the respiratory condition itself. Instead, it’s the effects of everyday life that have been turned upside-down because of the virus.

The effects of a global pandemic can include different factors related to work, school, and home. People can also experience emotional problems like worry, anxiety, and depression. Besides affecting your sleep schedule, it can even negatively impact your general health. So it’s a double-whammy.

COVID-19: The Importance of Sleep (video)

Stress and Sleep

While taking steps like picking a comfortable mattress can help you sleep like a baby, stress can have the opposite effect. In fact, insomnia can affect your ability to fall asleep and stay asleep, according to the Cleveland Clinic.

Stress triggered by stress hormones like cortisol can affect various biological processes, including sleep. If you’ve already received a cancer diagnosis, then a viral pandemic can make the situation even worse.

Pandemics and Sleep

The current pandemic can increase stressors and create an uncertain future due to the disruption of everyday life. This is due to extraordinary changes to daily life, including social distancing, virtual work, and home-schooling.

More Sleep for Cancer Patients During COVID Quarantines

Cancer survivors can take some basic steps to get more shut-eye during the current quarantines/lockdowns:

Sleep-friendly Environment

Dark, quiet, and cool rooms can all help to help cancer patients get a good night’s sleep during a global pandemic. It’s important to create a sleep-inducing environment that can help you fall asleep, and then cycle through the five sleep stages multiple times. If you dream you’re probably in ‘deep sleep.”

There are various steps you can take:

  • Minimize artificial lighting with options like night lights and dimmer switches
  • Clear your mind of everything and focus on falling asleep
  • End all daily news consumption before 7 PM
  • Use heavy curtains and blinds to block outside light
  • Avoid heavy meals, exercise, and caffeine/alcohol close to bedtime
  • Ditch all thoughts about the current COVID-19 pandemic
  • Use aromatherapy through sprays, diffusers, and massages at bedtime
  • Delay dealing with personal problems until the next day
  • Eliminate loud sounds and use sleep aids like noise machines
  • Do meditation, yoga, or light exercise to prepare for bedtime
  • Use self-mantras to help you doze off when your mind races
  • Lower the thermostat to about 65°F (18°C) to promote quality sleep

Conclusion

Dealing with the year-long COVID-19 pandemic can be tough enough. The predicament becomes even tougher for cancer patients who must also handle disease-related issues like cancer diagnosis, symptoms, and treatments. That’s why it’s so important for survivors to take steps to stay calm, boost their immune system, and get a good night’s sleep. Sleeping well can help you fight the coronavirus while you battle cancer.

Helpful Oral Care Tips For Cancer Patients

Around 80% of individuals undergoing myeloablative chemotherapy experience oral complications and conditions, according to professor in cancer and palliative care, Munikumar Ramasamy Venkatasalu. It is crucial for individuals with cancer and their caretakers to know how to sufficiently address conditions that may occur in all areas of health. In this case, it helps to know several helpful oral care tips to help patients maintain proper oral health.

Understand Common Oral Complications

Cancer patients often have a high risk of developing oral complications, as radiation therapy can cause direct damage and break down to salivary glands and oral tissue, according to the National Cancer Institute. Understanding some of the more common oral complications like fibrosis, tooth decay, and periodontitis can help you to spot any early symptoms so they can be nipped in the bud before they become exacerbated with time. Requesting a list of oral complications and their common symptoms from a dentist can help keep information fresh and easily accessible.

Schedule Veneer Cleaning Every Six Months

Veneers are often seen as a good option for cancer patients who have struggled with oral complications. However, just because a person has veneers, it does not mean that they are immune to cavities and gum disease. While veneers — especially porcelain ones — can last an average of 15 to 20 years, proper care and regular cleaning sessions can ensure they last longer. So for those with veneers, scheduling a cleaning session every six months is a must. A cleaning appointment also gives a dental professional an opportunity to give their client an update on the current state of their oral health.

Eat Bone-Building Foods

A good way to keep up a patient’s oral health and stave off any chemotherapy side effects is by ingesting more bone-building foods, according to Cancer.net. Eating more foods that increase the presence of Vitamin D and calcium help keep jaws and teeth strong. Some of the foods that help make bones strong are dairy products and cruciferous vegetables. Other good bone-building foods are nuts like almonds and pecans, as they are a good source of magnesium and phosphorus. Seeds like chia, pumpkin and flaxseed are also good sources of calcium, fiber and omega-3 fatty acids. So not only will a patient’s oral health improve, but other aspects of their health will be boosted as well.

Maintain Brushing And Flossing Every Day

Naturally, the best way to keep oral health up is by relying on good habits like brushing your teeth at least twice a day and flossing regularly. It is recommended that a patient’s toothbrush be soaked in warm water to help soften any bristles to avoid bruising gums that have become sensitive because of radiation therapy. Ask a dentist for special instructions on how to brush and floss to lower the risk of bleeding gums and infection.

Oral health is crucial to general health and overall quality of life. Therefore, cancer patients and their caregivers must be proactive in ensuring that good habits are maintained in order to keep away negative conditions. It is also recommended to keep in touch with the patient’s primary physician and dentist so that they may be able to catch any complications before they fully set in.

Cancer Awareness Calendar 2021

January

Cervical Cancer Awareness Month

Blood Donor Month


February

National Cancer Prevention Month

Gallbladder and Bile Duct Cancer Awareness Month

World Cancer Day (February 4, 2021)

National Donor Day (February 14, 2021)

Rare Disease Day (February 28, 2021)


March

Colorectal Cancer Awareness Month

International Women’s Day (March 8, 2021)

Triple-Negative Breast Cancer Day (March 3, 2021)

Kidney Cancer Awareness Month

Multiple Myeloma Awareness Month

Anal Cancer Awareness Day (March 21, 2021)


April

National Cancer Control Month

Esophageal Cancer Awareness Month

Minority Cancer Awareness Month

Minority Health Month

National Oral, Head, and Neck Cancer Awareness Week (April 11-17, 2021)

Testicular Cancer Awareness Month

World Health Day (April 7, 2021)


May

Bladder Cancer Awareness Month

Brain Tumor Awareness Month

Cancer Research Month

Clinical Trial Awareness Week

Melanoma and Skin Cancer Awareness Month

Melanoma Monday (May 3, 2021)

Women’s Check-up Day (May 10, 2021)

Women’s Health Week (May 9−15, 2021)

Skin Cancer Detection and Prevention Month


June

Cancer Survivors Month

Cancer Survivors Day (June 6, 2021)

Men’s Health Week (June 14−20, 2021)


July

UV Safety Awareness Month

Sarcoma and Bone Cancer Awareness Month


 August

Summer Sun Safety Month

World Lung Cancer Day (August 1, 2021)


September

Childhood Cancer Awareness Month

Uterine Cancer Awareness Month

Gynecologic Cancer Awareness Month

Blood Cancer Awareness Month

MPN Awareness Day (September 9, 2021)

Ovarian Cancer Awareness Month

Prostate Cancer Awareness Month

Take a Loved One to the Doctor Day (September 21, 2021)

Thyroid Cancer Awareness Month


October

Breast Cancer Awareness Month

National Mammography Day (October 15, 2021)

Liver Cancer Awareness Month


November

Lung Cancer Awareness Month

National Family Caregiver Month

Carcinoid Cancer Awareness Month

Neuroendocrine Tumor (NET) Awareness Day (November 10, 2021)

Pancreatic Cancer Awareness Month

Stomach Cancer Awareness Month

INSIST! Lung Cancer | Resource Guide

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Download This Guide

Should You Have Prostate Cancer Genetic Testing?

Should You Have Prostate Cancer Genetic Testing? from Patient Empowerment Network on Vimeo.

Should you ask for prostate cancer genetic testing? Dr. Nima Sharifi discusses prostate cancer genetics and shares his perspective on how testing can help ensure the best care for a patient.

Dr. Nima Sharifi is Director of the Genitourinary (GU) Malignancies Research Center at the Cleveland Clinic. Learn more here.

See more from The Pro-Active Prostate Cancer Patient Toolkit

Related Resources

Prostate Cancer Treatment Decisions: How Do Genetic Test Results Impact Your Options?

Prostate Cancer Treatment Decisions: How Do Genetic Test Results Impact Your Options?

Targeted Prostate Cancer Therapies vs. Chemotherapy: What’s the Difference?

Prostate Cancer Staging: What Patients Should Know

 


Transcript:

Dr. Sharifi:

I think it’s okay when you’re speaking with your physician to say that you’re concerned about the genetics of prostate cancer. You can ask about personalized medicine treatment options, and whether genetic testing would make a difference for treatments.

 

And you can also bring up the concern about family members, and that there may be an inherited or heritable component of cancer that could be passed down, for example, from one generation to the next and that could be shared among siblings. I think there’s nothing wrong with bringing that up. And I would suggest that if that’s a concern, that a man does bring that up with their physician.                                   

 

So, it turns out that there are certain germline mutations that can predispose to several different types of cancers.

 

For example, these BRCA mutations can predispose to developing prostate and perhaps more aggressive prostate cancer, but they can also predispose to developing breast cancer. So, if you look, for example, at members of a family who are related, you may see that certain cancers may develop in multiple family members. So, if you see that that – If you look at your family history and you see that that is the case, then you may want to think about genetic testing and perhaps to see a genetic counselor to talk about getting tested.

The Warrior in Me Saved My Life

After experiencing increasing fatigue over the course of several years, I started to miss gatherings with friends and family and got to the point of taking one day off a month from work to sleep all day. This was unlike me as I was always very involved with professional and volunteer activities and had a very full schedule including parenting my young son with my spouse. After a lingering cold evolved into bronchitis, I began to explore what was wrong with the assistance of my primary care provider (PCP). I had mild persistent anemia, but nothing to warrant the degree of extreme fatigue that I was experiencing. She (my PCP) was very tolerant of my various Google-induced ideas, graciously accepting some to follow up with tests and others to set aside. 

After eleven months, a test showed that I had elevated M-proteins and my PCP sent me to a hematologist/oncologist who after greeting me reviewed several years’ worth of labs and then turned to tell me to come back in six months. She did not examine me. She did not ask me about my symptoms. She prepared to usher exit the room. I felt that I could not leave her office without her understanding how significantly the fatigue was impacting my daily life. This is when the inner warrior in me said NO! I did not move from my chair. I told her, “Nope. Now is the time that I need to tell you about my symptoms.” (Now this was somewhat uncomfortable for me because I have been well-trained to be polite and professional with doctors, but I had had enough. My New York elbows were coming out!) 

I read from a list that I had prepared detailing what I had been able to do prior to feeling unwell and what I could do now. As I went down the list for several minutes, she looked at her watch in a disgruntled manner, finally asking me “What do you want?” I told her that I wanted to feel well. I did not feel well and believed that something was wrong. I wanted her to do more tests. She agreed and also sent me out to schedule an appointment in six months. One week later at 8 AM as I was on my way out to work, SHE called me to tell me that she had scheduled a bone marrow biopsy (BMB) for the next day. I cleared my calendar. The BMB results confirmed that I had stage 2 Myeloma with more than 80 percent involvement in my bone marrow. My husband and I learned of this on the day before Thanksgiving. We were both in shock. We had so much to learn and at that point had no idea how much this diagnosis was going to change our lives. 

After a quick success of additional tests scheduled STAT, I started chemotherapy within two weeks. Getting a diagnosis took A LOT of persistence and determination when specialists minimized what I knew about my body — that something significant was wrong. And it was. Today is five years to the day of that diagnosis and I still wonder whether I would be diagnosed today if I had not INSISTED upon further testing. To her credit, the oncologist/hematologist did eventually acknowledge that I was right to press her to do more tests and that it was through my self-advocacy that I achieved a diagnosis.

What I would hope that others would take away from this story is how essential it is to be aware of your own body and to keep advocating (again and again) for yourself with doctors even when your symptoms are minimized. I was trained to advocate for others as a social worker, but it took intentional work to give myself permission to say no to doctors at first politely and then later not so politely to demand additional testing until an outcome was achieved that explained my health issues. Be persistent. You know more about your symptoms than anyone else. Do not stop until you find out what is going on with your body.

Network Manager Program Role Description 

Who are Network Managers?

Patient Empowerment Network’s (PEN) mission is to fortify cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them with receiving the best, most personalized care available to ensure they have the best possible outcome.

PEN is a virtual community that supports patients through every step of their cancer journey. Their website, free webinars, and programs educate, then ACTIVATE cancer patients to become co-decision makers with their doctors; by knowing to ask the right questions, at the right time, empowered patients achieve better health outcomes

Established March of 2020, the Patient Empowerment Network Manager Program is made up of highly passionate empowerment ambassadors volunteering from around the country, engaging with PENs network of cancer patients and families in the digital space and serving as a direct conduit of empowerment across a growing list of therapeutic areas including CLL, AML, MPN, Lung cancer, Myeloma, Thyroid cancer, Kidney cancer and more.

Purpose:

This strong team of compassionate volunteer Network Managers does not give medical advice, instead, they help health communities adapt to the realities of living with a serious illness. PEN Network Managers pay it forward as the communities’ human bridge to survivorship as they understand first-hand the anxieties and uncertainties that come with a cancer diagnosis.

Network Managers create broader awareness of PEN’s resources within the cancer community through patient support groups, social media, expert interviews, conferences, and authored publications. Our Network Managers represent the eyes and ears around their specific network, growing and engaging with the network.  

Responsibilities:

Through various mediums, social media platforms, and content formats such as PEN’s Activity Guides, network managers develop specific messages, seek out resources, and contribute to amplifying the needs of specific health communities via guidance of an established editorial calendar. The time commitment for this role is 2-4 hours a month. Bi-weekly meetings occur at a scheduled time for Network Managers to share updates on activities and best practices for the benefit of others. Lastly, a biannual virtual network manager meeting occurs to bring all teams together for an opportunity to brainstorm on strengths and weaknesses.

Location:

  • Completely remote, you can work from anywhere! 
    • Utilize computer and webcam 

Support:

Full support received from Network Manager Coordinator, Nykema Mpama, and Executive Director, Andrea Conners.


Interested in becoming a Network Manager? Contact us at jobs@powerfulpatients.org

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Are You Prepared for Your Prostate Cancer Appointment? Expert Tips.

Are You Prepared for Your Prostate Cancer Appointment? Expert Tips. from Patient Empowerment Network on Vimeo.

Could you be better prepared for your prostate cancer appointment? Prostate cancer specialist, Dr. Alicia Morgans explains what pre-appointment tasks and helpful tools can help ensure patients get the most out of their appointments.

Dr. Alicia Morgans is an Assistant Professor of Medicine at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

See more from The Pro-Active Prostate Cancer Patient Toolkit

Related Resources

 

Seeking Optimal Prostate Cancer Care? The Importance of Partnering With A Specialist

How Does Prostate Cancer Staging Affect Treatment Approaches?

Prostate Cancer Treatment Decisions: Which Path is Best for YOU?

 


Transcript:

Dr. Alicia Morgans:

There’s not really a question that I think is missed in most appointments when I talk to men with prostate cancer, but there are many men who have a burning question, whatever it may be, and they forget to ask it when we’re in that clinical encounter.

And the advice I would have is it’s really important if you think of it as a question that’s really important to you or even just a fleeting thought, to consider keeping a notebook where you can write it down to remember what that question is. Because if you bring the notebook, even that fleeting thought that you may never think of again is something that you’ve got written down, and you can open that notebook, and you can say, “Hey, I thought this may be a silly question, but what do you think?” And I’m sure that your doctor will answer it.

Questions about “How long do I have?” or “What can I expect?” or “How is this going to end?” or “Where is this going to go?” – these are sometimes questions that are really hard to answer. But even those questions, if that’s what you’re thinking about all the time, are going to be important to at least discuss with your doctor, whether you get a concrete answer or not. That may be an ongoing conversation that you have. But if you trust your doctor, you’ll be able to ask whatever it is that you need and not feel like it’s a silly question, because there really isn’t a silly question.

My best recommendation for patients to think about as they’re preparing for their physician visit is to get an advocate; get somebody to come in with you. And if that individual can’t come in with you, perhaps that individual can be on a cell phone or on FaceTime or engaged in that visit in some way, either in person or virtually.

And to take notes or to ask for things to be printed out that explain what you discussed at your visit, because it is very challenging to take in everything that is discussed in those physician visits and memorize everything when there’s really so much going on in many cases. So, having another set of eyes and ears and having a notebook piece of paper or a printout that really catalogs what was discussed can be really, really helpful in preparing for a visit.

And the other thing is to maybe always end with “Is there anything that I didn’t ask that I should?” or “Is there anything else that I need to know?” And sometimes that will prompt the doctor to say, “Yeah, I got through this whole thing, but I meant to mention this, and I forgot.” So, always leaving that door open in case there’s anything else the doctor needs to mention, and sometimes they just need a little prompt at the end. But I think the advocate’s probably the most important part.

Seeking Optimal Prostate Cancer Care? The Importance of Partnering With a Specialist

Seeking Optimal Prostate Cancer Care? The Importance of Partnering With a Specialist from Patient Empowerment Network on Vimeo.

As prostate cancer treatment options continue to expand, it’s important to partner with a physician who is up-to-date on the latest developments. Dr. Alicia Morgans explains why patients should consider seeking a specialist and obtaining a second opinion.

Dr. Alicia Morgans is an Assistant Professor of Medicine at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.

See more from The Pro-Active Prostate Cancer Patient Toolkit

Related Resources

Three Key Steps to Take Following a Prostate Cancer Diagnosis

Are You Prepared for Your Prostate Cancer Appointment? Expert Tips

Prostate Cancer Treatment Decisions: Which Path is Best for YOU?

 


Transcript:

Dr. Alicia Morgans:

Over the last few years, prostate cancer treatment has been incredibly complicated. And I think I and many in the prostate cancer community would absolutely recommend that men with prostate cancer seek out a prostate cancer specialist to make sure that he has access to someone to get advice and medical recommendations that are going to be the most up-to-date.

It’s incredible to me that in the last few years there have actually been multiple new medications that have been approved, even some as recently as about a month and a half ago. And this landscape that we have to try to take care of men and help them live longer and feel better is constantly changing and hopefully broadening as we find more ways to take care of men with prostate cancer.

And the people that know that best are going to be specialists. And they include medical oncologists, urologists, and radiation oncologists, as well as some palliative care doctors who can really help with being specialists in pain control, constipation, appetite issues, energy issues. So, having a team of specialists is really critical. And it doesn’t necessarily mean that you need to see that specialist for every single appointment that you have for treating your prostate cancer, because many men in the United States who have prostate cancer don’t live very close to a large center where there might be a prostate cancer specialist.

Many men that I take care of actually live several hours away and come to see me once every six months or once a year or if they need advice because something has changed about their cancer. And that is completely okay, and actually, really, I think, a nice way to balance the convenience of having care close to home while still making sure that you have access to someone who is actively engaged in participating in the work to advance therapeutics and other ways of caring for prostate cancer.

Sometimes it can feel like you’re hurting feelings or potentially even offending your doctor if you say that you want to see someone else to get a second opinion or just to get another bit of advice about your cancer. But I think, and I think most doctors think, that at the end of the day part of dealing with cancer is making sure that you have the right treatment for the disease.

But part of taking care of people with cancer and dealing with cancer if you are the patient is making sure that your mind is at peace, that you have tried everything, and looked in every corner to find what you need to get the help that you really do deserve. And I think as we care for men with prostate cancer, we physicians know that we may have the answers for most but not all men, or we may not necessarily have an area of specialty in the particular issue that that man needs help with.

And so, we’re always open – I think I am. And I’m sure most doctors are, too – encouraging people, in fact, to seek second opinions if that’s what they need to either feel like they have access to the treatments that they need or to put their minds at ease. Because it really is the combination of physical care and emotional and mental care that is necessary to heal yourself while you are taking care of yourself with prostate cancer.