PEN Blog Archives

The Threat of Coronavirus for Lung Cancer Patients

March 22, 2020/in Lung Cancer, PEN Blog /by PEN Editorial Staff

With the novel coronavirus rapidly spreading across the U.S, anxiety amongst those who are in the higher risk category is rising up. And with good reason, as there are many things that remain uncertain in regards to what the future hold for the medical system and especially for those who rely on it for reasons other than COVID-19.

While not everyone will get sick, just like in the case of influenza, there are people who are definitely more at risk of developing serious complications. People who are older, especially those who are over 70 and people with underlying health conditions, such as chronic lung diseases, cardiovascular diseases, diabetes, and cancer appear to be at higher risk for major complications. That includes admission to intensive care and even death. A recent study designed to understand the effects of COVID19 in relation to underlying diseases, analyzed 1590 cases in China, out of which patients with a history of cancer. Out of the group, 5 patients had lung cancer, 4 had received chemotherapy within the past month and 12 were cancer survivors with only routine follow-ups.

By comparison with non-cancer patients, the study observed that they were more susceptible to have severe complications that required invasive ventilation or led to death, with 7 (or 39%) out of the total 18 patients with a cancer history ending up in intensive care. However, the study also noted that patients with lung cancer did not have a higher probability of developing severe complications than patients with other types of cancer. Patients with cancer are in a high group risk because of their systemic immunosuppressive state that is caused by treatments such as chemotherapy. This is because, in the scenario that a cancer patient gets infected with COVID-19, the organs are practically getting attacked on two fronts rendering the body too weak to fight for maintaining a proper function of vital organs. Despite the fact that the novel coronavirus is labeled as an acute respiratory syndrome, it seems that more deaths have been caused by multiple organ dysfunction than respiratory failure.

Dealing With Viral Infections While Undergoing Chemotherapy

For those currently undergoing chemotherapy, radiation, immunotherapies or any other active treatment for cancer, the risks of severe complications in case of getting infected with the novel coronavirus are very real. But these risks extend even beyond the period of active treatment, as the effects of these therapies don’t finish with the last round. These therapies are associated with reduced immunity and not just that, as they are very invasive. While chemotherapy kills cancer cells and it’s essential in battling cancer, it can also damage healthy cells, weaken the heart muscles, it can interfere with the body’s ability to produce healthy blood platelets as well as red and white blood cells and it can harm the kidneys.

People have already been advised to isolate at home and avoid contact with others as much as possible, but what happens with those who need to go to hospitals in order to receive the much-needed treatment? Their risk of getting infected is likely to increase. Dealing with infections while undergoing chemotherapy can lead to a potentially life-threatening complication called sepsis (an overwhelming body response to an infection that can cause tissue damage and organ failure) as your immune system is damaged and the number of white blood cells is very reduced, making it impossible to fight infection. The highest risk for infections is in the period after a chemotherapy session, between 7-12 days, when your white blood cells are extremely low and the body is extremely fragile. This period varies depending on which chemotherapy drug you are being treated with.

There are also a few other risk factors that could make it more possible to develop a severe reaction to an infection while white blood cell count is low:

If you are 65 or older
If you have lost weight in a short time
If you have another condition aside from cancer, such as diabetes, high blood pressure, liver or kidney disease or bronchitis
If you have a type of cancer that affects blood or lymph nodes, such as leukemia
If your cancer has spread to more parts of your body
If the chemotherapy you are receiving is strong or combined with other treatments such as radiation, as this may kill even more blood cells making your immune system weaker for a longer time therefore, impossible to fight infection

How Should You and Your Caretaker Protect from COVID-19

It’s extremely important that if you develop any symptoms that resemble the ones of COVID-19, to call your doctor as soon as possible. But as it can be extremely dangerous for patients with a cancer history or chemotherapy to catch any kind of viral infection, you should try as much as you can to respect the recommendations of doctors and other health officials, especially considering how fast the virus is spreading.

Family is very important and avoiding them is a difficult task, but if someone in your household is sick or presenting specific COVID-19 symptoms, social distancing is extremely important. Be sure to have them sleep in a separate room, wear gloves around the house and a mask, constantly disinfect some areas of the house and wash your hand regularly. It’s also extremely important that if you need to go to the hospital for treatment, to not bring a sick family member with you.

Caregivers should be extra careful when it comes to hygiene and take all the necessary actions to protect cancer patients. Constantly follow the CDC guidelines on how to protect from the novel coronavirus and try to avoid any contact in case you start developing symptoms.

Tips for Immunity Boost During COVID-19 Pandemic

In terms of what you can do to help better your immune system, one of the first things you can do is make sure you get enough sleep. Sleep deprivation can severely suppress the immune system, so at least 6 (but ideally 8) hours of sleep a night can be vital.

Exercise can also help boost the immune system. Since going outside is not a good idea right now, you can try some yoga exercises or something that will get your heart pumping. Good nutrition is also very important, as 70 to 80 percent of our immune system is in the gastrointestinal tract and it’s directly impacted by what we eat. A balanced diet with fruits and vegetables is one of the best measures you can take to help your immune system.

About The Author

Gregory A. Cade is the main attorney at Environmental Litigation Group P.C, a law firm dedicated to helping cancer victims who have developed the disease as a result of occupational exposure to toxic chemicals recover rightful compensation from those who put them at risk.

PEN-Powered Activity Guide

Thyroid Cancer Empowerment Lead

March 16, 2020/in Carly Flumer, PEN Blog, Thyroid Cancer, Thyroid Cancer Blog ND, Thyroid Cancer Newly Diagnosed /by Carly Flumer

The drip-drip-dripping of the sink in the radiology room echoed loudly in my brain as I waited for the pathologist. I just had a biopsy done for two spots on my neck—one suspected to be cancerous. “A nodule,” my primary care physician had previously explained at my annual physical. The radiologist had comforted me, casually saying, “I wouldn’t worry, though. There’s only a ten to fifteen percent chance.”

In just a few minutes, I would be given my fate.

In January 2017, I was diagnosed with thyroid cancer. I met my surgeon five months later. “What you have is called a papillarycarcinoma,” he said. “Doesn’t cancer come from tumors?” I thought. I looked up some terms in the National Cancer Institute’s Dictionary of Cancer

Nodule – A growth or lump that may be malignant (cancer) or benign (not cancer)
Carcinoma – cancer that begins in the skin or in tissues that line or cover internal organs
Tumor – an abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumors may be benign (not cancer) or malignant (cancer). Also called neoplasm.

The dictionary helped, but why weren’t these words explained to me by the doctors? It sounded like all the terms were being used interchangeably, and my brain was already feeling corrupted by the diagnosis—I was struggling to comprehend my diagnosis.

My bewilderment grew as I tried to understand how the thyroid hormones, T3 and T4, worked together with thyroglobulin (a biomarker), and the pituitary gland located in the brain. I understood what hypothyroidism vs. hyperthyroidism meant, but only because I knew the symptoms of each, and would be able to tell my doctor if I was experiencing any of them.

I was told by multiple doctors that I had the “good” type of cancer, and I felt hopeless and quite stupid for asking them to repeat what they had just said, or for asking them to explain a term or biological process in a different way.

Coincidentally, I had just started my fourth month of graduate school in a program focused on health communication—one of my first classes was writing for health communicators. That’s where I learned that, as of 2003, when the U.S. Department of Education measured health literacy of various populations across the country

Only 53% had intermediate health literacy, or “having the skills necessary to perform moderately challenging activities.”
12% had proficient health literacy, or “skills necessary to perform more complex and challenging literacy activities.”
Which means that more than 40% of the population is only able to understand the basics of their health.

It only gets worse for people living in poverty, the elderly, and racial minorities.

So how can we create health literacy equality among all populations?

The answer lies with patient advocacy and patient empowerment.

The doctor-patient relationship has changed significantly—for the better. Where once a patient relied on their doctor for information, to learn about a condition or a symptom, today, patients are finding this information online—and bringing their knowledge to appointments. They’re asking questions about their health and treatment paths. Some are even looking for answers about things that the doctor may not have heard of…yet!

As a health care professional, are you:

Using terms that are patient-friendly or that are at grade level?
Using pictures or diagrams to simplify complex concepts?
Asking questions to make sure patients understand your instructions?
Explaining test results, documents, brochures, etc.?

Most importantly, are you taking the time to listen to the patient’s concerns, and addressing them in a clear, understandable manner?

When doctors and health care providers take time to engage with them, patients feel more empowered to take charge of their health, and to become their own advocates. When the fearful become fearless is when real change happens.

Carly Flumer

Carly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University in Health Communication and received her Bachelor’s from George Mason University in Health Administration and Policy. While being diagnosed with the “C” word at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her health outcome, she looks to advocate for other cancer patients through education, research, and health literacy.

How to Separate Coronavirus Fact from Fiction

March 13, 2020/in PEN Blog /by Health Content Collective

It’s Patient Empowerment Network’s (PEN) mission to improve health literacy, by helping you find credible health sources and make the best decisions for you and your loved ones.

The coronavirus (COVID-19) has officially been declared a pandemic by the World Health Organization (WHO) and it has created a frenzy of information. Details about the virus are spreading rapidly from every news outlet and being discussed worldwide.

Misinformation can lead to panic and fear, while credible information can help allay your fears. But, how can you identify trustworthy information? Let’s review steps to recognize quality sources to help reduce anxiety during this confusing time.

The Problem? Too Much Information Spreading Too Quickly.

Referred to as an “infodemic” by the World Health Organization, it is an over-abundance of information – some accurate and some not – that makes it hard for people to find trustworthy sources and reliable guidance when they need it.

Basic Tips on Identifying Credible Information:

Visit Sites Ending in .org or .gov: These sites typically have a rigorous review process and the information is usually reliable.
- .org usually indicates that this is a non-profit organization or advocacy group
- .gov indicates that the website is a government organization
Practice Social Media Distancing: Information shared on social media may not always be accurate and you should always make sure that the source is credible before you spread misinformation or take advice.
Ask Your Doctor: It’s best to consult with your doctor about what you’ve learned online. Information you read online is never a substitute for medical advice.
Check Sources: Cross-reference information you receive with credible sources, such as the Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO).
- Be leery of the information found on opinion-based websites, especially ones that don’t cite the sources of its information.
Use Good Judgement: Just as you would in the real world, be cautious of sites making bold claims about curing your health condition and/or sharing home remedies. These unverified home remedies can be dangerous, and in some cases, deadly.

So, what sites and social media sources can you trust?

The Centers for Disease Control and Prevention (CDC) has detailed information about steps to control the spread and is updated frequently. This should be your go-to source of information about the coronavirus.
The National Institutes of Health (NIH) and the World Health Organization (WHO) are trusted sources, providing in-depth and more global information about the virus.
Visit your medical center website to stay informed about their procedures and how it may affect your care.
Use your patient portal to communicate with your medical team.
Well-established medical centers have created information pages with details specific to cancer patients.
- Visit the Moffitt Cancer Center website to review their information on protecting against Coronavirus, particularly the section called “I have cancer. Am I at increased risk of contracting COVID-19?”
- MD Anderson Cancer Center has detailed information about Coronavirus precautions, including a Frequently-Asked-Questions (FAQ) guide.

Have Questions for Your Doctor? Missing an Appointment? Consider Telemedicine.

Telemedicine is the practice of medicine via technology to get care from a distance. Your healthcare professional can be in one location and use a video-chat technology (i.e. Skype, Zoom, etc.) to deliver care remotely. Given these uncertain times, more medical centers maybe offering this option to prevent further spread of the virus. The benefits of a virtual office visit include:

Patients can receive guidance about whether they need to be seen or tested instead of showing up unannounced at an emergency room or doctor’s office.
Those that are high risk for a serious illness can choose to visit the doctor virtually for a routine check in with a specialist or a primary care doctor.
Avoiding crowded waiting rooms and the risk for infection.

To see what’s available to you, reach out to your doctor either via your Patient Portal or phone and follow your medical center closely via the web or social media. It’s likely they will be working to raise awareness of this option when it becomes available to patients. The bottom line: if you can avoid visiting an emergency room or hospital, take advantage.

Protect Yourself and Others

There are many tried and true methods for preventing the spread and contraction of illness, such as washing your hands often, avoiding touching your face, and keeping frequently touched surfaces disinfected. For more tips and details on prevention, visit the CDC Website here: https://www.cdc.gov/coronavirus/2019-ncov/about/prevention.html.

Key Takeaways

Health Content Collective

Health Content Collective was founded by Thea Burris and Jamie Machala, and provides communications services to the healthcare community. Health Content Collective has fostered long-term relationships with numerous academic medical centers, key opinion leaders, and advocacy groups. Coupled with more than 30 years of involvement in healthcare education & marketing, we have a comprehensive and specialized understanding of the unique needs of the medical and patient communities.

Removing Barriers to a Successful Patient-Provider Relationship #patientchat Highlights

March 13, 2020/in Empowered Patient Chats, PEN Blog /by Kara Rayburn

Last week, we hosted an Empowered #patientchat on “Removing Barriers to a Successful Patient-Provider Relationship”. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Holistic Medicine

“Equified Partnership”

Keys to a Good Patient-Provider Relationship

Full Chat

A Look at Leukemia

March 10, 2020/in Acute Myeloid Leukemia, AML Newly Diagnosed, Chronic Lymphocytic Leukemia, PEN Blog /by Kara Rayburn

What is Leukemia?

As with many other cancers, leukemia is not a singular disease. There are many types of leukemia, and while it is a common childhood cancer, leukemia actually occurs more often in older adults. Leukemia is the most common cancer in people under the age of 15, but it is most likely to affect people who are 55 or older. There are more than 60,000 cases of adult leukemia diagnosed each year, and it is more common among men than women.

Leukemia is a broad term that describes cancer of the blood or bone marrow. It starts when the DNA of developing blood cells are damaged and the bone marrow makes abnormal cells. The abnormal blood cells are the leukemia cells which grow and divide uncontrollably. Unlike healthy cells that follow a life cycle, the leukemia cells don’t die when they are supposed to so they continue to build up, eventually overcrowding the blood. They crowd out normal white blood cells, red blood cells, and platelets so those normal cells can’t grow and function. Eventually, there are more cancer cells than healthy cells in the blood. The type of leukemia is determined based on which blood cells are affected by the abnormal cells. Leukemia usually affects the white blood cells, called leukocytes, but can occur in other blood cells. There are four main types of leukemia: chronic, acute, lymphocytic, and myelogenous.

Leukemia that grows slowly is called chronic leukemia. The cancer cells form very slowly so the body can also continue to form healthy cells, but over time the cancer cells continue to grow and the leukemia worsens.

Acute leukemia grows very quickly and gets worse really fast. It has been identified as the most rapidly progressing cancer, and it can develop and grow in a matter of days or weeks.

Lymphocytic leukemia forms in the part of the bone marrow that makes lymphocytes, which are white blood cells that are also immune cells. Chronic lymphocytic leukemia (CLL) is most common in older adults and makes up about 25 percent of adult leukemia cases. It is more common in men than women and is very rare in children. Acute lymphoblastic leukemia (ALL) also affects older adults, but children younger than five have the highest risk of developing it.

Myelogenous leukemia forms in the bone marrow cells that produce blood cells, rather than forming in the actual blood cells. Chronic myelogenous leukemia (CML) accounts for about 15 percent of all leukemia cases in the United States. CML develops mostly in adults and is very rare in children. Acute myelogenous leukemia (AML) is a rare cancer that develops quickly with symptoms of fever, difficulty breathing, and pain in the joints. It can be caused by environmental factors, and develops more often in adults than children, and more often in men than women.

There are also several less common types of leukemia. Most of these types are chronic, and each year in the United States, about 6,000 cases of these less common leukemias are diagnosed.

Chronic myelomonocytic leukemia (CMML) develops from myeloid cells.
Juvenile myelomonocytic leukemia (JMML) is typically found in very young children and is another type of myeloid leukemia.
Acute promyelocytic leukemia (APL) is a subtype of AML.
Hairy cell leukemia is slow growing, chronic, and makes too many B cells that appear hairy wen viewed under a microscope.

Leukemia Possible Risk Factors

There are several risk factors linked to leukemia. There are environmental factors and genetic reasons why some people might develop leukemia. Some of the factors can be controlled while others can not. Age, smoking history, and exposure to hazardous chemicals are all possible risk factors. Other risk factors may include exposure to chemicals or medical treatments, personal health history, and family history. Some of the possible risk factors need more study to determine a definite link to leukemia, but being aware of your potential risk is important.

If you were exposed to chemotherapy or radiation therapy for another cancer you have a higher chance of getting leukemia later in life. Also, children who took medications to suppress their immune systems, such as after an organ transplant, may develop leukemia. Exposure to chemicals such as benzene and formaldehyde, often found in cleaning products, hair dyes, and embalming fluid, may also increase your risk of developing leukemia. Smoking and exposure to workplace chemicals like gasoline, diesel and pesticides could also be a risk factor.

There are several syndromes, conditions, and genetic disorders that can also increase leukemia risk. Li-Fraumeni syndrome, a hereditary disorder, is linked to leukemia, and children with Down syndrome have a two to three percent increased risk of developing acute myeloid or acute lymphocytic leukemia. Other genetic disorders that increase leukemia risk are Fanconi anemia, and dyskeratosis congenita (DKC). The inherited immune system conditions ataxia-telangiectasia, Bloom syndrome, Schwachmai-Diamond syndrome, and Wiskott-Aldrich syndrome also increase the risk of leukemia. Risk is also increased in patients with a history of blood disorders such as myelodysplastic syndrome, myeloproliferative neoplasm, and aplastic anemia. There are also viruses, such as the human T-lymphotropic virus (HTLV-1), linked to leukemia.

Family history can also play a role in the development of leukemia. Having a sibling with leukemia is a risk factor, and having an identical twin with leukemia gives you a one in five chance of developing it yourself.

Preventing Leukemia

There are no known ways to prevent leukemia; however, being aware of risk factors and attempting to reduce them could help. Studies have linked leukemia to smoking and obesity, so quitting smoking and having a healthy body weight could help prevent leukemia. In addition, avoiding heavy exposure to dangerous chemicals might decrease your risk.

Signs and Symptoms

There are no reliable early screening methods for leukemia and, especially in chronic leukemia, the symptoms may not be very noticeable early on. Symptoms such as fatigue and fever may not be alarming at first, and could be mistakenly attributed to other causes. Acute leukemia symptoms come on faster and are typically more noticeable. All types of leukemia can have similar symptoms, but the symptoms each individual patient has can help determine the type of leukemia. Any symptoms should be checked by a doctor.

The most common symptoms of leukemia are:

Extreme fatigue that doesn’t respond to a good night sleep
Enlarged lymph nodes that are swollen and tender as a result of leukemia cells building up
Unexplained fever higher than 101 degrees that occurs frequently or lasts more than three weeks with no explanation
Night sweats that can also occur during the day, and can drench the sheets through to the mattress
Bruising and excess bleeding such as frequent nose bleeds caused by poor blood clotting which is also a symptom
Poor blood clotting is apparent when small red or purple spots, called petechiae, appear
Abdominal pain occurs when white blood cells accumulate in the liver or spleen
Bone and joint pain usually occurs in the hips or sternum where there is a lot of bone marrow that is being crowded by abnormal cells
Headaches and other neurological symptoms such as seizures, dizziness, visual changes, nausea, vomiting can occur due to leukemia cells in the fluid around the brain and spinal cord
Unintentional weight loss of five percent or more of your body weight in 12 months or less. Weight loss can sometimes be a result of having a swollen liver or spleen which can lead to loss of appetite
Frequent infections occur because white blood cells aren’t working properly to fight infections
Anemia, or iron deficiency, occurs when there is a lack of hemoglobin in the blood to transport iron in the body. Iron deficiency can cause labored breathing and pale skin. Symptoms of anemia are nausea, fever, chills, night sweats, flu-like symptoms, weight loss, bone pain, and tiredness

Complications from Leukemia

Leukemia can cause several serious complications due to the nature of the disease and treatment. Complications such as life-threatening infections can occur when white blood cells are damaged or reduced. When white blood cells aren’t fully functioning, the body can’t properly fight infections, so any infections a leukemia patient gets, such as urinary tract infections or pneumonia, can become very serious. Low platelet counts make bleeding in areas such as the brain, the lungs, and the stomach or intestines very dangerous, while high white blood cell counts can cause leukemia cells to spill over from the blood into other organs possibly causing respiratory failure, stroke, or heart attack.

There are other complications that are related to specific types of leukemia. Notably, the development of secondary cancers and blood cancers are more likely in CLL patients. Another complication of CLL is called a Richter transformation in which the cells can transform into an aggressive form of lymphoma. Kidney failure can be a treatment-related complication of AML or ALL.

Leukemia Diagnosis

Leukemia can’t be diagnosed based solely on symptoms, but if leukemia is suspected, in a general exam, the doctor will look for an enlarged spleen or liver and take a blood sample. Further diagnostic testing may include a bone marrow test where a long needle is used to extract marrow from the center of a bone (usually the hip). The bone marrow test will help determine if the patient has leukemia and the type of leukemia.

Staging Leukemia

Staging is used to identify the size and location of cancer in the body. Typically cancers have four stages with Stage I usually indicating the cancer is in one location and is not very large. Stage IV indicates the cancer has grown large and spread far from the original location. Most leukemias aren’t usually staged because they are in the blood and therefore have already spread throughout the body. Instead, leukemia can be considered untreated, active, in remission, or recurrent. The exception is CLL, which can spread through the lymph nodes or the blood or bone marrow, so it does have three stages.

Treatment

The earlier treatment starts for leukemia, the better chance of remission. However, thanks to some exceptional advancements in leukemia treatment medications, doctors are often able to take the time they need to come up with the best treatment plan for each individual with leukemia, even in cases of acute leukemia if life-threatening complications are not present. When coming up with a treatment plan, doctors consider the patient’s age, overall health, and most importantly, the type of leukemia the patient has.

Leukemia treatment options vary for each type of cancer:

Watchful Waiting is used when treatment for slower growing leukemias, such as CLL, may not be necessary;

Chemotherapy is the primary treatment for AML, and sometimes a bone marrow transplant is needed;

Targeted therapies are medications that are tyrosine kinase inhibitors which target cancer cells, but don’t affect healthy cells. Targeted therapies have less side effects. Many CML patients have a gene mutation that responds very well to targeted therapy;

Interferon therapy is a drug that acts similar to a naturally occurring immune response which slows and then stops the leukemia cells. This therapy can cause severe side effects;

Radiation therapy is often used in ALL to kill bone marrow tissue before a transplant is done;

Surgery to remove the spleen may be necessary, depending on the type of leukemia;

Stem cell transplant is effective in treating CML and is usually more successful in younger patients. After chemotherapy or radiation or both are used to destroy the bone marrow, new stem cells are implanted into the bone marrow so noncancerous cells can grow.

Treatment for acute leukemia can take up to two years. It is usually done in phases. In the first phase the goal is to use chemotherapy for several weeks to kill the cancer cells and put the patient in remission. The second phase is designed to kill any remaining cancer cells using chemotherapy or stem cell transplant or both. The treatments and their side effects can be pretty harsh for older patients so researchers have been focusing on finding targeted therapies for acute leukemia, which have fewer side effects. Researchers are also hoping CAR T-cell therapy, which uses the patient’s own immune system to treat cancer, could be an eventual replacement for stem cell replacement therapy in older ALL patients. AML is more aggressive and often harder to treat, but several new targeted medications have been approved to treat AML. Researchers continue to look at other targeted therapy options and other drugs for AML.

In some cases of chronic leukemia, a stem cell transplant might be required, but the main treatment is oral medications that patients will probably take for the rest of their lives. Some research is investigating whether or not patients could potentially stop taking the medications at a certain point.

CML treatments have really advanced and there are now several drugs that target the abnormal protein that causes CML. Thanks to these targeted medications CML patients now have a close to normal life expectancy and a 90 percent five-year survival rate. Clinical trials are looking at using targeted therapies to treat CLL as well and CAR T-cell therapies are also being considered for CLL treatment.

Recovery and Survival

Leukemia represents 3.5 percent of all new cancer cases in the United States, and it is the seventh leading cause of cancer death. The outlook for leukemia patients depends on which type of leukemia they have, their overall health, and their age. Leukemia is more likely to be fatal in older patients. The average age of those who die from leukemia is 75. However, the many advances in treatment options and medications, such as targeted therapies, have created a better prognosis for many. Leukemia has a 62.7 percent five-year survival rate, and some people with leukemia can now achieve complete remission.

Sources

Felman, Adam. “What to Know About Leukemia” Medical News Today, medically reviewed August 28, 2019, https://www.medicalnewstoday.com/articles/142595. Accessed March 9, 2020.

Raymaakers, Karen. “Symptoms of Leukemia” Verywell Health, medically reviewed November 1, 2019, https://www.verywellhealth.com/leukemia-signs-and-symptoms-2252435. Accessed March 9, 2020.

“Adult Leukemia: What You Need to Know” Dana-Farber Cancer Institute, updated December 5, 2019, https://blog.dana-farber.org/insight/2019/11/adult-leukemia-five-things-you-need-to-know/. Accessed March 9, 2020.

Wang, Eunice. “How Fast Does Leukemia Develop” Roswell Park Comprehensive Cancer Center, October 4, 2018, https://www.roswellpark.org/cancertalk/201810/how-fast-does-leukemia-develop. Accessed March 9, 2020.

“Reducing Your Risk for Leukemia” Canadian Cancer Society, https://www.cancer.ca/en/cancer-information/cancer-type/leukemia/risks/reducing-your-risk/?region=on. Accessed March 9, 2020.

“Risk Factors for Leukemia” Canadian Cancer Society, https://www.cancer.ca/en/cancer-information/cancer-type/leukemia/risks/?region=on. Accessed March 9, 2020.

Stöppler, Melissa Conrad. “Leukemia” MedicineNet, medically reviewed September 11, 2019, https://www.medicinenet.com/leukemia/article.htm. Accessed March 9, 2020.

“Leukemia Screening” Moffitt Cancer Center, https://moffitt.org/cancers/leukemia/diagnosis/screening/. Accessed March 9, 2020.

“Leukemia — Patient Version” National Cancer Institute, https://www.cancer.gov/types/leukemia. Accessed March 9, 2020.

“Cancer Stat Facts — Leukemia” National Cancer Institute Surveillance, Epidemiology, and End Results Program, https://seer.cancer.gov/statfacts/html/leuks.html. Accessed March 9, 2020.

“Advances in Leukemia Research” National Cancer Institute, June 25, 2019,https://www.cancer.gov/types/leukemia/research. Accessed March 9, 2020.

In this moment

March 9, 2020/in GNYC Treatment and Clinical Trials, GYNC Blog ND, GYNC Blog TC, GYNC Blog WN, GYNC Blog WPS, GYNC Newly Diagnosed, GYNC What's Next, GYNC Whole Patient Support, Gynecological Cancers, Patient Stories, PEN Blog, Uncategorized, Women Patient Stories /by Cissy White

“Is there a pressure to be positive all the time?” my friend Kathy asked.

It’s a good question. I said, “No,” and then “Yes,” and added in a “Maybe.”

But it’s not a simple yes, no, or maybe. It’s actually Yes-No-Maybe all at the same time. My kid is on Facebook and so is my family. My friends are on Facebook and they want the best or at least to know I’m not suffering. I’m aware of that and of them. But that doesn’t mean I show up fake or put on fronts. I don’t.

The pressure to be positive isn’t external. I am safe to be real with SO MANY people and that luxury is a gift beyond measure. The desire to be positive comes from within but it’s not motivated by pressure. It’s real. In general, I ACTUALLY FEEL positive.

And also, when my oncologist asks how my partner or daughter are doing, I say:

“Well, I’m cranky, lethargic, have chemo-brain, and obsessed with recurrence so that’s fun for them…”

That’s also real.

Real is positive.

So, when people say I’m strong, a rock star, a warrior, and a fighter, I can’t say I feel I am any of those things. My day to day to life has been changed and though I feel 100% half-ass as a mom, partner, friend, relative, and employee – I also know I’m doing the best I can.

I don’t even have much time to think of how I’m doing because I’m so busy doing, if that makes sense.

It’s like I woke up after surgery standing in the middle of a highway I didn’t drive myself on. The focus is dodging the cars going 75 m.p.h. on my left and right while feeling groggy and confused. When I manage to make it to the sidewalk or the rest area, the relief I feel is real. I’m happy to be alive and out of danger. It’s a genuine and consuming experience. I’m relieved any time I’m not in the road and also aware I could be dropped back on that highway in another minute, day, week, or year.

That’s the complexity and reality of living with cancer (#ovarian, high-grade serious, stage 3) that, even when it’s effectively treated, still recurs 75% to 85% of the time. To have no evidence of disease isn’t the type of blessing I’ve been in the habit of counting.

For decades, I have had the luxury of physical wellness and had never stayed overnight in a hospital. Health isn’t something I take for granted anymore but that doesn’t make me a warrior as much as it makes me someone changed by cancer more than by choice.

I used to think people were sick with cancer, and either mounted a “successful” fight and returned to living or lost “the fight” and died. It seemed either/or and as those were the two extreme outcomes.

I knew my mother HAD cervical cancer in her early 20’s and survived. I knew that my Nana and her two siblings had cancer in their 60’s, and did not. They died.

I know cancer is always a full-on fight for the person with cancer and those that live with and love them (us), but fights are won or lost and that is the problem with the “fight cancer” narrative. It’s way too simplistic for the complexity of cancer, cancer treatment, cancer survivorship, palliative care, and grief.

It omits the vast amounts of time that many of us live with cancer. We live with it in active form, or in remission, or in fear of recurrence, and sometimes with recurrence after recurrence. That way of living may last one or two years or one or two decades. We may have years we seem to be “winning” the fight and years we seem to be “losing.”

But winning and losing is far too simplistic. Some live and have loss. Some die and should be counted as winners.

I’d never known some fight the same cancer repeatedly, or “beat” it before getting another kind and another and another. I didn’t know that people cancer can be a lifelong disease and that some kinds are genetic time bombs in our bodies and families that can put us at risk even if we never smoked.

I didn’t know that one can have or five surgeries, that the side effects can start at the head (loss of hair, headaches, chemo brain, no nose hair, dry mouth, hearing loss), for example, and go all the way to the feet with lymph edema, joint pain, neuropathy, and that all the organs in between can be impacted as well.

I didn’t know that most cancer side effects are not from cancer but the treatments to fight, eradicate, and prevent more cancer.

I didn’t know that in addition to chemo, one might contend with liver or kidney issues, with high or low blood pressure, with changes to the way heart beats, the digestive symptom works.

I didn’t know that cancer surgery might include a hysterectomy and removing some or several organs, lymph nodes and body parts I’d never heard of. I didn’t know how it’s impossible to know what is from cancer, chemo, menopause or the piles of pills one is prescribed.

I didn’t know how much the body can endure and still keep going. I didn’t know I’d have a body that would have to learn and know all that I was mostly ignorant about -even though cancer is a disease not unknown to my own family members.

I am still learning and knowing and going. I hope what I learn keeps others from having to have first-hand knowledge of the cancer experience.

And even as I say that I know the ways I’ve been changed are not all bad, hard, or grueling.

I didn’t know that at, even in the midst of being consumed by all things basic bodily functioning (breathing, heart beating, eating, pooping, sleeping, and staying alive), one can also be grateful, satisfied, and appreciate life and loved ones.

I know it now and feel grateful daily.

Five months after my diagnosis, I’m what’s called NED (No Evident Disease). It means that after surgery, and then 5 rounds of chemo, a carbo/taxol combination every 3 weeks, there is no sign of ovarian cancer. My CA 125, a cancer marker in the blood, is back to normal. Things are looking better today and I’m grateful, optimistic, relieved, but also know that my life is forever changed, and I’ll never be out of the woods.

Despite my NED status, my chances of being alive in 10 years are 15%.

Despite my NED status, my chances of being alive in five years are less than 30%.

Did you know 70% of those with ovarian cancer die within five years of being diagnosed?

I’m not a statistic, but a person – still, it’s hard not to do the calculations.

5 years from my diagnosis I’ll be 57, and my daughter 21.
5 years from my diagnosis, my partner will be 62.
Will we get to retire together, ever? Will I get 5 years?

It’s hard not to wonder if some or all of those five years are what most would consider “good” years and how I will manage well no matter what? And how my loved ones will fare…

So I focus on moments, days, and now.

My new mantra remains, “In this moment….”

It’s how I approach all of my days.

I do think and worry about the future, and even plan for the worst while also planning for the best. Because the best is always possible.

What if, I’m the 15% and live for 10 or more years? What if I make it to 62? What if a new way to detect, manage, or treat ovarian cancer is discovered? What if I discover some synergy in remedies and medicines not yet combined?

Maybe I will see my kid graduate college or start a career. Maybe I’ll help her shop for furniture in a new apartment. No one knows the future. No one guaranteed more than now.

Maybe I’ll get to go to Europe with my partner, elope and return married, or stay forever engaged.

Maybe I’ll attend a mother-daughter yoga retreat with friends like I’ve always wanted to do.

Maybe I’ll spend a month at a cabin writing and eating good food with my besties?

Maybe I’ll be able to be there for my family members and friends the way they have been there for me?

Maybe I’ll get to walk my dog at the same beach and park, with my guy, my brother and sister-in-law, and our dogs and kids?

I don’t know how much time I’ll get or what life holds.

I know when my Nana died in her mid 60’s it seemed way too soon. I know that now, if I make it to my mid 60’s, it will be miraculous.

I don’t put as much into my retirement savings.

I think more about how to spend time, and money, now.

These are not negative thoughts they are the thoughts of someone contending with cancer and wide awake while pondering my own mortality.

“You won’t die of this,” some have said. “Cancer won’t kill you.”

But no one knows that for sure. It’s not an assurance the oncologists offer.

People mean well when they say such things but I no longer bite my tongue when I hear these words.

I say, “I might die of this,” (and I think, but don’t say, and you may as well).

I do remind people that we are all going to die and few of us will get to choose the time or place or method. It’s not wrong to acknowledge mortality. It’s not depressing and it does not mean one is giving up. I want to be responsible, and quickly, as I don’t have the luxury to be as reflective as I used to be because cancer is all-consuming.

I’ve barely had a moment to reflect on the past five months never mind the last five decades. I am trying to stay on top of the bare minimum requirements of being alive. I can’t yet keep up with emails or phone calls or visits. Projects and goals and plans of all kinds have shifted, paused, halted, or been abandoned.

My energy is now a resource I have to monitor and preserve. My will is not something I can endlessly tap into or call upon to motor me and keep me motivated. There’s no resource I have yet to tap into or call upon. Each day, I must consciously and repeatedly work to fill the well. And now, when friends and family who work while sick, I no longer think they are tough or strong. I think of how we routinely punish and ignore our bodies. I notice how often we run on fumes, require more of ourselves than we have as though we will never tire out.

I think of all those who must or feel they must keep going no matter what, without pause or rest, oblivious to the toll it will take or of those who have systems that can’t fight their germs. And I think of employers who sometimes require it because they offer no paid time off.

I used to run myself ragged. I used to say, “I’m digging deep, into my bone marrow if I have to.” I wasn’t being literal.

Now, when my iron and my platelets go low, I think of my old words in new ways. Now, even my bone marrow isn’t what is used to be.

I’m entirely who I always was and completely different.

It’s both.

I am more and less of who I was.

My life and days are simple and structured now and also heavy, layered, and complex. Who and what fills my day, by choice and not by choice, is radically different.

Cancer changed my life. That’s irrefutable and will be whether I live or die in the sooner or in the later.

I speak with and interact with doctors, nurses, life insurance and disability insurance and pharmacists more. I spend more money on supplements, clean eating, and make more time to walk, exercise, and sleep. There’s so much less I am capable of.

But sometimes, even without hair, I feel totally like myself.

Sometimes, like this week, my daughter caught me in the middle of life, reading a book, petting the cat, on my bed in my heated infrared sauna blanket. I was relaxed and at ease.

I shared this photo and someone commented on how my “cat scan” was quite feline, – the image brought a whole new meaning to the “cat scan” image.

I laughed and laughed and laughed. I’m still laughing.

In this moment, in many moments, I’m humbled by the enormity of all things cancer and being alive. That’s real. That’s there. It can be intense.

But also, in this moment, I’m laughing.

And laughing, it turns out, is my favorite way to live.

Cissy White

When not recovering or coping with her recent ovarian cancer diagnosis, chemo brain, and the other treatment-related side effects, Christine “Cissy” White works as Community Manager of the Parenting with ACEs community on ACEs Connection and blogs at www.healwritenow.com. White has been published in The Boston Globe, Spirituality and Health, Ms. Magazine, The Mighty, To Write Love on Her Arms, Elephant Journal, the Center for Health Journalism, and ACEs Too High. She is the 2019 recipient of the Touching Trauma at Its Heart Award, given by the Attachment Trauma Network for her work advocating on behalf of families coping with traumatic stress from developmental trauma. White has led Parenting with ACEs, Parenting After Trauma, and Writing to Heal workshops and speaks passionately about the need for first-person perspectives and the power of lived expertise. Her survivor-led advocacy has been written about in The Atlantic, Huffington Post, and The Mighty.

Do Tattoos Increase The Risk Of Cancer?

March 4, 2020/in PEN Blog /by PEN Editorial Staff

Three in ten Americans have a tattoo, with younger generations being more likely than ever to get one. Many cancer survivors get tattoos to illustrate their journey, and cosmetic tattoos and decorative nipple tattoos following breast reconstructions can help people to accept their post-cancer bodies. But what if these symbols of hope are actually linked to an increased risk of causing cancer?

Ink in the lymph nodes

Very little research has been done into tattoo inks, but physicians have noted that tattooed people have lymph nodes that are colored. The lymph nodes act as a filter for the body and are important for healthy immune system function. Circumstantial evidence also suggests that pigments from tattoo inks, both organic and inorganic, travel around the body and have the potential to do damage. Studies on mice have found that deposits in lymph nodes are not a health concern, though this may not be the same for humans. Simply living longer lives than mice can lead to health concerns if ink deposits accumulate in the body and cause a problem in the long-run. However, it’s important to note that there’s currently no hard evidence to prove that tattoo inks are directly linked to an increased risk of cancer.

Tattoo ink regulation is needed

The tattoo industry has gone largely unmonitored, but now that it’s growing and tattoos are becoming more popular, there’s a need for regulation, particularly of the inks. Research shows that inks contain a wide range of chemicals and heavy metals, some of which can be toxic. Some elements included are titanium, aluminum, nickel and chromium, along with other metals. Some of these metals, along with preservatives, carriers and contaminants in tattoo inks, are known to be toxic and can potentially cause cancer. Additionally, research from the Australian government has found that 22% of all the inks they tested contained chemicals compounds that are known to cause cancer. Therefore, choosing the right ink can make a big difference, and henna tattoos can also be a good option for some people.

The bottom line

While some links have been found between cancer and tattoo inks, the evidence is largely circumstantial. As a cancer patient, getting a tattoo can be empowering and a symbol of ending or starting a new chapter in your life. Breast and nipple tattoos after mastectomies are growing in popularity too, and help women who have had breast reconstructive surgery to feel empowered and have a more natural-looking breast, which can help them to accept their journey and move on with their lives.

Knowing the potential risks is always a good idea but, based on current research, the risk is low. Getting tattoos done by professionals who have a good reputation and come recommended by others is always a good idea. Asking the artist about the inks they’re using can help you to do your own research into specific brands and make an informed decision.

Tattoos are here to stay, and while there’s currently no hard evidence to suggest that they increase the risk of cancer, there’s little reason to worry. Symbolic, decorative and cosmetic tattoos can help people to mentally heal after cancer, so there’s no reason why people should stop using them.

Health Fraud Scam – Be Aware and Careful

March 2, 2020/in PEN Blog, Uncategorized /by Ben Hartwig

Avoiding health care scams can be as simple as not signing blank forms, not providing personal information to unknown parties, and not agreeing to schemes to make money by falsifying paperwork.

Unfortunately, there is a scammer for every medical condition or concern. People who are suffering from conditions like cancer and its harsh treatment regimen may be confused and belittled by persistent phone calls or emails but there are ways to fight back.

How it Works

Healthcare fraud is a way of billing health insurers or government programs like Medicaid out of money through a system of fake, unnecessary, or inflated bills. An unscrupulous doctor may offer you cash in exchange for your signature on a permission form that will allow him to bill for fake services.

Others, including people who show up at retirement homes or senior activity centers, may offer to provide a medical “test” of some kind, whether eyesight or hearing, etc. The individual then bills your insurer or Medicaid an exorbitant amount for the useless service – or gets added to your monthly regimen of providers despite the service or monitoring not being necessary. A new wrinkle in this phishing scam are people who offer to provide a “genetic test” using a cheek swab at a healthcare fair, senior center, or other forum, and who have you fill out medical insurance information at the same time. They will then try to bill your insurance for the unnecessary “test” and may pursue you for the cost if your insurance refuses to pay.

Medical equipment, from oxygen tanks to catheters to shower chairs, may be provided by scammers who bill your healthcare insurance despite the item being either unnecessary or absurdly high-price. If you accept medical equipment, be sure it’s recommended by your regular doctor, that it’s necessary, and that you shop around for the best price rather than just signing an authorization that allows the provider to bill any amount.

Home health aides may be assigned to your home and billed to your insurance but never show up to provide a service. Keep an eye on your billing statements to be sure this sort of fraud is not showing up on your account, and call your provider if you see anything suspicious.

How to Avoid Healthcare Scams

To protect yourself from such scams use tools at your disposal, such as reverse email lookup, confirm website addresses and compare them to actual government websites you find on your own, or call your health insurance provider if you’re suspicious about a bill, a caller, or an unwanted package of medical equipment. Here are other tips to follow:

Never sign a blank healthcare or medical form that authorizes payment in exchange for a treatment (such as that described above) that was not planned and authorized by your usual medical team.
Do not accept unnecessary equipment that you did not order and do not use, like braces, apnea devices, or orthotics.
Watch your billing statements for any unauthorized charges, and report any that are unusual.
If you think a doctor is doing unnecessary tests or surgeries, get a second opinion. This can be a way to bill for services that you don’t need.
Check your billing statements to ensure that the procedures noted are exactly what you received because some scammers are able to change the name of a procedure, such as a biopsy, to collect more money.
Providers may also try to “unbundle” procedures and charge more for each step rather than a “package” price. Watch for this more expensive billing practice on your statements.

Related issues

Healthcare can be a confusing part of life to navigate, as many of us have multiple doctors, copayments, coverage issues, deductibles, drug coverage, and more to learn about. Unfortunately there is a scammer looking to work every angle and take advantage of anyone, so beware of the following healthcare related scams:

Anyone who calls to tell you it’s necessary to buy a new health insurance card or pay over the phone for a new Medicare card immediately and wants your credit card and/or social security number and personal information (you can call 1-800-MEDICARE to check the person’s identity and validity of their call before providing any information);
Confusing medical discount plans with medical insurance – discount plans are “club” like groups that claim to offer discounts on doctor visits, drugs, and medical devices but they are not the same as insurance;
If you receive Medicare you do not need additional insurance provided through the Healthcare Marketplace, and anyone who wants to charge you a fee for helping to make a decision about coverage offered through the Healthcare Marketplace is a scammer and should not be given a credit card number, bank transfer, or paid with gift cards, and
Anyone who claims to be “from the government” and threatens you with a financial penalty for not being up to date on insurance is a scammer and should not be told any personal information such as social security number (you can call the Federal Trade Commission at 1-877-382-4357 to ask about or report fraudulent schemes).

Ben Hartwig

Ben is the Director of Web Operations at InfoTracer, who takes a wide view from the whole system. He authors guides on the entire security posture, both physical and cyber. Enjoys sharing the best practices and does it the right way!

Driving Change: How Rare Disease Patients Can Get Involved #patientchat Highlights

February 28, 2020/in Empowered Patient Chats, PEN Blog /by Kara Rayburn

Last week, we hosted an Empowered #patientchat on “Driving Change: How Rare Disease Patients Can Get Involved” with RDMD (@rdmd). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Equality vs. Equity

Continued Discussion

Culture Change

Full Chat

Empowered! Podcast: Meet Andrea Conners

February 27, 2020/in Acute Myeloid Leukemia, AML Newly Diagnosed, AML Podcasts ND, BC Newly Diagnosed, BC Podcasts ND, Breast Cancer, Care Partner Resources, Care Partner Resources Podcasts, Chronic Lymphocytic Leukemia, CLL Newly Diagnosed, CLL Podcasts ND, FL Newly Diagnosed, Follicular Lymphoma, General Health Info, General Newly Diagnosed, General Podcast ND, GYNC Newly Diagnosed, GYNC Podcast ND, Gynecological Cancers, Head & Neck Cancer, Head & Neck Cancer Newly Diagnosed, Head & Neck Podcast ND, LC Newly Diagnosed, LC Podcasts ND, Lung Cancer, MM Newly Diagnosed, MM Podcasts ND, MPN Newly Diagnosed, MPN Podcasts ND, Multiple Myeloma, Myeloproliferative Neoplasms, NHL Newly Diagnosed, NHL Podcasts ND, Non-Hodgkin's Lymphoma, PC Newly Diagnosed, PC Resources ND, PEN Blog, SC Newly Diagnosed, SC Podcasts ND, Skin Cancer, Waldenstrom, Waldenstrom Newly Diagnosed /by Kara Rayburn

Today, we’re extremely proud to introduce our first-ever Empowered! podcast. Empowered! will bring you conversations around topics that are important to patients and care partners.

For our first episode, we meet Andrea Conners. Andrea is Patient Empowerment Network’s Executive Director. Andrea shares a little bit about herself, about PEN, and her inspiration in getting involved.

…

How Can You Best Support A Friend With Cancer?

February 26, 2020/in Adrenal Cancer, Adrenal Cancer Blog WPS, Adrenal Cancer Whole Patient Support, AML Blog WPS, Appendix Cancer, Appendix Cancer Blog WPS, Appendix Cancer Whole Patient Support, BC Blog WPS, Bone Cancer, Bone Cancer Blog WPS, Bone Cancer Whole Patient Support, Brain Cancer, Brain Cancer Blog WPS, Brain Cancer Whole Patient Support, CLL Blog WPS, Eye Cancer, Eye Cancer Blog WPS, Eye Cancer Whole Patient Support, FL Blog WPS, Follicular Lymphoma, General Blog WPS, GYNC Blog WPS, Head & Neck Blog WPS, LC Blog WPS, Marie Ennis-O'Connor, MM Blog WPS, MPN Blog WPS, NHL Blog WPS, PC Blog WPS, PEN Blog, SC Blog WPS, Waldenstrom, Waldenstrom Blog WPS /by Marie Ennis-O'Connor

What happens when someone close to you has been diagnosed with cancer?

How do you find the right words to say?

What is the best way to support them?

And how do you cope with your own emotions and feelings at the same time?

In this month’s article, I am sharing advice that comes directly from those who have personal experience of cancer – either as a patient themselves or as a friend or family member to someone with cancer. The following tips are some of the things that friends said and did that were most helpful to cancer patients at the time of diagnosis and treatment.

Firstly, acknowledge that this can be a hard time for you too

Hearing that a friend has been diagnosed with cancer may impact you in ways that you might not be prepared for. You may have many different emotions to cope with. You may feel angry, sad, and scared that this is happening to your friend. You may even find the news hard to take in and feel numb. Breast cancer survivor, Nicole McClean^[1] describes her feelings of numbness on hearing the news that her best friend was diagnosed with the same disease: “I didn’t know what to feel. I didn’t know what to say. Everything I had said to other people didn’t really apply because this was MY friend. Not a stranger that I was comforting. Not even myself that I had to give a pep talk to.”

But don’t make it about you

In the shock of hearing about a friend’s diagnosis, it can be tempting to slip into a place of dwelling on your own fears and anxieties. Nicole cautions others not to make this about themselves. “Please don’t be a friend like me. Don’t be the friend who makes the person with the diagnosis have to stop her own grieving to console you,” she says. “This is her moment. Her time to BE consoled. I don’t ever want her to feel like she needs to console me or comfort me during this time. That’s no longer her role. It is now mine.”

Just ask what’s needed

“My number one tip,” says radiation oncologist, Dr Matthew Katz (@subatomicdoc), is “just ask what you can do to help. It can be hard to predict and may vary at different times in the cancer experience.” Breast surgeon, Dr Deanna Attai (@DrAttai) agrees: “Ask the patient what do you need, ask if they just want some company to sit, listen and be present.”

Above all, advises author and advocate, Nancy Stordahl (@NancysPoint) “don’t try to be a fixer and please, avoid using platitudes. Don’t tell her she’s strong, brave or courageous. Don’t add to her burden by making her feel she must live up to some gold standard of “doing cancer right”. Let her be real. Witness her pain. Listen. Just be there.”

Listen, hear and do

“The steps to being a good friend and supporter are simple”, says Nicole, “Listen and do.” The first part is listening. “Listen to her. Or just sit with her silently. But either way, give her space where she’s comfortable sharing with you what’s in her heart without that moment becoming about you.“

John Moore (@john_chilmark), founder of Chilmark Research, echoes this when he says: “Listen, truly listen and they will open up in time to the fear they hold within – just how scary it can be at times.”

Julia, co-founder of online breast cancer support community @BCCWW agrees. “Listen and hear,” she advises, “if they have bad days let them, cancer isn’t fun times. Flip side: if they feel good, believe them.”

And it’s ok to not know what to say sometimes.

“Something that I think is helpful is for friends and family to remember that it’s okay if you don’t know what to say to the person with cancer,” explains Lisa Valentine (@HabitgratLisa), ·who blogs at habitualgratitude.com. “Show up, say “I don’t know what to say, but I am here for you.” Take it from there. Showing up and listening usually takes care of what can happen next.”

HER2 breast cancer patient, Tracy (@tracyintenbury) suggests offering to go to “chemo sessions if the person with cancer would otherwise be attending alone.” Metastatic breast cancer patient, Ilene Kaminsky (@ilenealizah) appreciated those who attended medical appointments with her “especially during the first months when everything seemed to proceed at the pace of tar, and again during critical appointments/ chemo days.”

Do what needs to be done

“Don’t ask her what she needs, just do something that she needs,” recommends Nicole. “Show up, and help out.” Chair of Cardiomyopathy, CR UK patient board and NCRI rep for kidney and bladder cancer, Alison Fielding (@alisonfielding) agrees: “Make specific offers of help such as lifts, company or chores rather than waiting to be asked.”

“Anyone who said let me know if you need anything wasn’t going to get an answer,” explains Ilene “so during difficult times, one or two of my friends would do my wash, change the sheets and put the clothes away. She’d bring me smoothies while I’d be knocked out from my pre-taxol Benadryl and knew exactly what I’d like.”

Clinical Professor of Pathology, Dr David Grenache (@ClinChemDoc), cautions following through with offers of help. “From experience: when you tell them you will do what you can to help, then follow through with that when you are asked for help. You may have to drop a high priority task but when the call for help comes. Go!”

Victoria (@terrortoria), founder and community manager of @YBCN_UK (which supports young women with breast cancer), recalls a friend who “made home made soup for me when I told her I couldn’t bring myself to eat things. She left them on my doorstep as I couldn’t bring myself to see people either for a time. It was a 90-minute round trip for her. She’d listened to how I felt and then helped me within my limits.”

This theme of cooked meals comes up again and again.

“Cook meals so the person with cancer has something warm and nutritious,” recommends Tracy. Maureen Kenny (@MaureenKenny1), a patient living with secondary breast cancer, agrees, saying “you can never go wrong with a cooked meal.”

After a long day in hospital, breast cancer patient advocate, Siobhan Feeney (@BreastDense) recalls the day she came home to find “in the porch, cooked dinner, homemade bread, marmalade and fresh eggs.” A gift she says she’ll never forget.

Alleviating the pressure of cooking and housework is a super practical way to help a friend with cancer. Sarah Connor (@sacosw), shares a story about her neighbor who “came once a week, took away a basket of dirty clothes, brought them back washed, dried, ready to put away. She didn’t know me very well. Still makes me tingle.”

Give thoughtful gifts

From warm socks and soft blankets to body lotion and lip balm, there are many gifts you can bring a friend who is going through treatment. Beverly A. Zavaleta MD^[2], author of Braving Chemo, writes: “Each time someone sent me a gift I felt a connectedness to the giver and to the “outside world,” which was a welcome escape from the cancer world that I was living in… when I received a gift, I appreciated the time that that person took to remember me, to think of what I might need and to choose, assemble or make the gift.”

Breast cancer survivor, Karen Murray (@murraykaren) recommends practical gifts like “hand cream (skin very dry after chemo), gel for mouth ulcers (also common), some nice sweets/fruit.”

Male breast cancer survivor, Dennis Keim (@denniskeim) suggests “a jar of Aquaphor might be a nice gift. Especially if their skin is getting hammered by chemo.”

“Help the cancer patient pamper themselves,” proposes Lisa Valentine. “You know your friend or family member well enough–get them something they wouldn’t get themselves because they would think it’s extravagant–i.e. the expensive chocolate or a pedicure.” What may seem like an indulgence can also be extremely practical. “Taking me for gel nails protected my ever softening nails,” explains Ilene Kaminsky.

Although be mindful that not everyone appreciates the same things.

“I wasn’t interested in toiletries, candles. Wine gums – they mask the taste of a nasty pre-chemo antiemetic,” says Syliva (@SylviaB_). “People often think buying flowers is naff. I adored it when people bought me flowers. A couple of people bought spectacular flowering plants.” Breast cancer blogger, Sheri^[3] received the fabulous gift of a monthly subscription to in-home flower deliveries during treatment.

Help with treatment decisions

If you have already been through cancer yourself, your friend may turn to you for treatment advice. You can guide them to helpful resources and share your own experience, but ultimately the final decision is theirs alone. Sometimes you may not agree about treatment decisions. This can be hard for both of you. Try to accept this and support their decision. “I think not being critical with someone’s choices is very important. Support should not be in spite of circumstances,” says Ilene Kaminsky.

Offer compassion and kindness

Two-times breast cancer survivor and patient advocate Terri Coutee^[4] believes the best gifts you can offer a friend is compassion and kindness. “Hold a hand if you are with a friend or loved one in person,” she advises. “You don’t even have to say anything. Perhaps your warm, human touch is enough. Tell them you have no idea how they are feeling at the moment but want to support them in any way you can. Be sensitive to the fact they may only need someone to listen, not advise.”

John Hanley (@ChemoCookery) considers “small practical actions and warm, soothing, short reassuring words are perfect.” Words like “I’m going nowhere and I’ll be here shoulder to shoulder when you need me. A little note/text/card “Here for you 24/7 anytime.”A HUG, an Embrace, a hand, eye contact.”

Sara Liyanage, author of Ticking Off Breast Cancer ^[5] reminds us that “a cancer diagnosis turns your world upside down and overnight you can become scared, emotional, vulnerable and anxious. Having friends and family step up and show kindness is a lifeline which can carry you through from diagnosis to the end of treatment (and importantly, beyond).”

Treat your friend like you normally would

Researcher, Caroline Lloyd (@TheGriefGeek), cautions us not to “make it all about the cancer, they are still a person.” Writer and metastatic breast cancer patient, Julia Barnickle (@JuliaBarnickle) agrees. “I prefer to keep conversation as normal as possible for my own sake – I don’t want cancer to take over my life.”

Stage 4 melanoma patient advocate, Kay Curtin (@kaycurtin1) suggests you talk to your friend “like you would any friend. We haven’t suddenly become aliens who require a different style of language,” she points out. Sherry Reynolds (@Cascadia), whose Mom is a 15-year metastatic breast cancer patient, talks about how her mother “really appreciated it when people talked to her about regular things vs always talking about her cancer or asking how she was doing. She was living with her cancer, it wasn’t who she is.”

Know when to back off

“What I didn’t want, which is equally important, was people trying to encourage me to go anywhere or do anything,” says Syliva (@SylviaB_).“ I spent a lot of time on my sofa and felt guilty saying no to people who wanted me to go out.”

Knowing when to be there for your friend, and when to give them space isn’t always easy. but it’s an important balancing act as a good friend. In Tips for Being A Great Cancer Friend, Steve Rubin,^[6] points out that “sometimes, the overstimulation from nurses popping in, PT sessions, and all the tests/drug schedules can become so exhausting that you just want to be left alone. Other times, the loneliness kicks in and you could really use a friendly face.”

It may take time to find the right balance, so let your friend guide you. Nicole McClean shares her experience with her friend: “I haven’t spoken to her a lot. I didn’t want to become that sort of pesky, well-intentioned friend who searched for every little thing that might show how she was feeling at any particular moment. Because I know that her feelings would change from moment to moment and sometimes… sometimes it’s just too much to have someone repeatedly ask you… “how are you really feeling?” even when you know they mean well. At this point, I am letting her guide me into how much she needs me and where she wants me to be.”

At the same time, Terri Coutee advises gentle persistence: “Don’t give up if you offer help and they don’t respond. Revisit your offer to do something for them with gentle persistence. One day they may decide they need your help,” she says. Maureen Kenny recalls “a friend who texted me every time she was about to go shopping to see if I needed/wanted anything while she was out. I rarely did but I always really appreciated her asking.”

Make your support ongoing

Support is not just one and done. In the shock and drama of a crisis, friends rally round, but once the shock has worn off many disappear. True friends stick around long after the initial days, weeks and months of a cancer diagnosis. Ilene asks that friends continue to“remember birthdays, cancerversaries, and remember me on holidays. A card means a lot even to just say hi.”

Final thoughts

Many studies have found that cancer survivors with strong emotional support tend to better adjust to the changes cancer brings to their lives, have a more positive outlook, and often report a better quality of life. Research has shown that people with cancer need support from friends. You can make a big difference in the life of someone with cancer. ^[7]

“I personally loved just knowing I was cared for, says lobular breast cancer campaigner, Claire Turner (@ClaireTTweets). “A number of friends didn’t contact me or come and see me and that hurt, so simply be there in whatever way means something,” she advises.

“The truth is basic,” says Nicole McClean, “nobody wants somebody they love to go through cancer. Especially if they’ve been through it themselves. You want people you love to be spared this type of hardship. But you can’t protect them from it. You can only help them through it. Be there for them in the ways that they need.”

Tailoring your help to what your friend needs and enjoys most is the best way to be a friend to them. As four-times cancer survivor Sarah Dow (@he4dgirl) points out “the answers will surely be as varied as we are, both in life generally, our experience of cancer, and our connection with our friend.”

^[1] Nicole McClean. My Fabulous Boobies.

^[2] Beverly A. Zavaleta MD, The Best Gifts For Chemotherapy Patients

^[3] Life After Why

^[4] Terri Coutee, DiepCJourney

^[5] Sara Liyanage, “What To Do (And What Not To Do) For Someone With Breast Cancer”

^[6] Steve Rubin, The (Other) C Word

^[7] American Cancer Society, “How to Be a Friend to Someone With Cancer”

Marie Ennis-O'Connor

A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.

hcsmmonitor.com/

Disparities in Care: Equality vs. Equity #patientchat Highlights

February 14, 2020/in Empowered Patient Chats, Health Equity, PEN Blog /by Kara Rayburn

Last week, we hosted an Empowered #patientchat on “Disparities in Care: Equality vs. Equity” with Diverse Health Hub (@DHealthHub). The #patientchat community came together for an engaging discussion and shared what was their mind.