Getting A Second Opinion From A Rural Location?

From a Town Meeting in September 2016, Janet Freeman-Daily interviews a panel of cancer experts about how patients in rural or remote locations can get second or multidisciplinary opinions from larger facilities or academic institutes. The panel includes the following experts:

  • Nisha Monhindra, MD Assistant Professor of Medicine, Hematology/Oncology Division, Feinberg School of Medicine Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • D. Ross Camidge, MD, PhD, Director Thoracic Oncology Clinical and Clinical Research Programs University of Colorado Denver
  • David D. Odell, MD, MMSc, Assistant Professor, Thoracic Surgery Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • Timothy J. Kruser, MD, Assistant Professor, Radiation Oncology Robert H. Lurie Comprehensive Cancer Center of Northwestern University

Check out the full video below to hear all the experts advice.

 

Getting A Second Opinion From A Rural Location? from Patient Empowerment Network on Vimeo.

Liquid Biopsy Is the New Frontier in Cancer Diagnosis

When my husband was diagnosed with very early stage prostate cancer, it was determined that the best course of action was “watchful waiting” – that is, monitoring the cancer at six month intervals using biopsies of the prostate. It sounded reasonable.

What was not mentioned was the excruciating ordeal of prostate biopsy. Each time he went in for one, it took all day because of the side effects of blood clotting and Amy Grayblocking of the urethra. This led to catheterization as well as pain. After his third one he said, “Let’s just cut the damn prostate out. It’s gotta be better than these biopsies.”

Wouldn’t it be great to have the same information gleaned from a drop of blood?

Thanks to Dr. Dennis Lo, a researcher in Hong Kong, this technology may soon be available. He developed a technique called the “liquid biopsy,” which has shown great success in detecting liver and other cancers before they are symptomatic. He does this with a gene sequencing machine that analyzes the DNA in a person’s blood. Since dying cancer cells shed their DNA into the blood stream, a liquid biopsy can detect the presence of a cancer on a cellular level. This technology is already being used in China as part of prenatal monitoring, as the fetus sheds cells into the mother’s bloodstream during pregnancy.

Early detection of cancer has been behind the great improvement in cancer treatment over the last few decades. For example, one of the main reasons for the decline in colorectal cancer is the more frequent use of colonoscopies. For greater efficacy in early detection, liquid biopsy is being looked at with great interest by American researchers and companies as well. Eric Topol, a professor of genomics at the Scripps Research Institute, stated that this technology, will become the “stethoscope for the next 200 years.” A San Diego company, Illumina, which builds fast gene-sequencing machines, is excited about the market potential of as much as $40 billion. It manufactures these devices, some of which are as small as a cell phone, and the devices could be used in clinical trials very shortly.

The liquid biopsy is not a one-size-fits-all cancer detection system. As each cancer has unique DNA markers, part of the research is to identify those markers and apply them specifically.

As far as my husband is concerned, the day cannot come too soon when a liquid biopsy is available for his type of prostate cancer. Luckily his cancer seems to be in remission, and his biopsy schedule has been reduced. Perhaps by the next rodeo, he’ll be able to have a blood draw and call it a day.

 

The Benefits and Pitfalls of Blogging About Your Illness

In his book, The Wounded Storyteller, Arthur Frank, Professor Emeritus of Sociology at the University of Calgary, writes that when we are ill we are wounded not just in body, but in voice. He describes how illness can radically alter how a person relates to the world and how we need to find a way to restore our fractured identity. When I was diagnosed with breast cancer over a decade ago, writing a blog, Journeying Beyond Breast Cancer, helped me express myself, reconnect to a new sense of self, and find my voice again.

Throughout her life, the writer Virginia Woolf maintained that her work was incomplete until it was shared with readers. And I think this is also true of being part of a blogging community. When we share our writing, someone else has heard our voice. Someone else cares and understands. So often, illness causes us to feel isolated and cut off from others. Blogging is a way for us to find a shared sense of connection and community.

the-benefits-and-pitfalls-of-blogging-about-your-illnessYet sharing our story online is not without its pitfalls; the most obvious of which is a loss of privacy. You should consider how revealing your medical history online might have an impact on your family and professional circumstances. How will your employer, co-workers, or other family members view you? Do you risk being over-identified with your illness? For me, disclosure of my own story has evolved from initial anonymity to a point where I now choose to share more openly. However, the degree to which I share information still depends on the space where I share it and the degree of trust I have with the people I share with (for instance I consider my blog a safe space to tell my story, but I am more cautious on Twitter). But what happens if that safe space is violated and our expectations of trust are shattered? When our words are taken out of context or used for a purpose we didn’t intend? Is information shared publicly implicitly available to everyone just because it is in the public domain? What are the ethics of research that includes collecting and analyzing patient stories or observing online behaviour without individuals knowing they are being included in research? In an age when technology has outpaced the ethical underpinnings of research and the culture surrounding privacy has changed profoundly, these are questions we need to find answers to.

Although we understand that what we share online is in the public domain, we nevertheless trust each other to maintain a collective sense of privacy, which includes not having our words reproduced without our knowledge or taken out of context. The issue of maintaining privacy in the public domain was brought into sharp focus two years ago when blogger Lisa Adams became the subject of an online debate. Adams, who blogged and tweeted about her experience of living with end-stage cancer, came to the attention of two journalists who strongly criticised what they called “Adams dying out loud.” Their opinions ignited a firestorm of debate about the public disclosure of illness, and the sharing of personal choices surrounding treatment and death and dying.

Illness makes us vulnerable and learning to navigate the digital landscape while also managing our vulnerability is a skill that we need to master if we are to protect ourselves online. Think carefully about what the process of online disclosure entails. Weigh up what you expect to gain from it and what implications sharing this information might have on your career or family life. If you are a parent or carer who writes about a patient, do you have their permission to share this information? In the case of writing about a child, what future effect might this have on one who cannot give consent or understand the significance of their story being shared so widely?

People have always gathered together to share what they know about health and illness, hoping to help and learn from others. What’s new is that we now have the ability to expand the reach of our conversations at internet speed and at internet scale. What happens in real life happens on line, but faster. This has many benefits, but it also means there is a higher potential for unintended consequences when we have less control over who sees our stories. It’s a good idea to periodically review the privacy settings on your social media accounts to decide if you are comfortable with the level of control you have over the information you share. Ask yourself, if your intended audience were sitting in front of you now, how comfortable would you feel sharing this information? How do you think you’ll feel after sharing it? Are you ready for feedback (positive or negative)? Remember sharing your story online doesn’t have to be all or nothing. Go slowly at the beginning, allow trust to build over time, and share only when you feel ready to do so.

Above all, be courageous in sharing your story. I am filled with gratitude for those who bravely blazed the trail in opening the discussion and decreasing the isolation connected with serious illness. I continue to be in awe of the connections and communities forged in the digital space and I look forward to seeing how this will evolve over time.

 

 

Thanks to Social Media, Rare Progress on Rare Diseases

This post was written by Meredith Salisbury for Techonomy.com and was originally published on July, 26, 2016.

Rare DiseaseSolving any disease is hard, but solving rare disease is a special kind of torture. Take everything that must be accomplished with any old disease—What causes it? Under what circumstances? Who does it affect? How can we prevent it or cure it?—and then toss in a scarcity of cases. When doctors don’t see enough patients with the same condition, just recognizing that there are commonalities between them is a major challenge. How do you put together a useful clinical trial with a few hundred patients when there might only be 50 people in the world with a particular disease?

That’s why any advance in how we identify and treat rare disease is cause for celebration. Recently, social media has been a big part of many of those advances. Patients with these diseases are for the first time able to reach across geographic and cultural borders to band together, giving critical mass to efforts like fundraising and clinical trial enrollment that might otherwise wither away. The same technology that lets us fund glowing plants or find fellow cake-decorating enthusiasts may turn out to be the weapon that takes down many rare diseases.

Corrie Painter was on the path to earning her PhD in biochemistry when she was diagnosed with angiosarcoma, a rare form of cancer inside the blood vessels that affects just a few hundred people globally each year. Fewer than a third of patients diagnosed with angiosarcoma will be alive five years later. Six years later, Painter has beaten the odds—but when she speaks about life immediately after diagnosis, one of the things she remembers most is searching online for other patients fighting the same disease. Most of the people she tracked down in these searches had already succumbed to the cancer. Rare disease is tremendously isolating, and patients like Painter learn quickly that few people can truly understand their story.

Today, the angiosarcoma community is vibrant and connected, due in large part to Painter’s efforts. She helped put together a Facebook group for patients or people interested in the disease; it now has more than 2,000 members. At a moment’s notice, they can offer advice to fellow patients, share the latest research news, agree to participate in trials, and more. Painter also cofounded a nonprofit, Angiosarcoma Awareness, that coordinates fundraising for the disease. By gathering the small world of people affected by angiosarcoma, she has made possible what no individual could do alone: raised significant amounts of money on a regular basis to accelerate research into the disease and potential treatments.

As the opportunity for building rare disease communities through social media becomes evident, many people are following the same path. Sonia Vallabh was diagnosed at age 27 with a genetic mutation that makes it a virtual certainty she will develop the same rare prion disease that killed her mother. She and her husband, Eric Minikel, launched a blog and a nonprofit called the Prion Alliance to spur fundraising efforts and provide a source of relevant news and updates for other patients with a range of prion diseases. In 2014, Techonomy covered the remarkable identification of the first several patients with a newly discovered disease; many of those patients were found after the first patient’s parents blogged about the unexpected diagnosis.

To be sure, advocacy groups successfully built rare disease communities long before social media existed. One organization, Genetic Alliance, has been particularly important in assisting rare disease foundations by providing much-needed resources and training in patient advocacy, clinical trials, and more. But as genome sequencing is used to solve more and more medical mystery cases, the rate at which rare diseases are being discovered is increasing.

These new diseases—seen in a single patient, or maybe a few patients—require every tool available to establish communities and resources for supporting patients and developing treatments. As more people sign up for consumer genomic services or online genealogy platforms that allow for connecting with other users, this kind of progress might occur even faster. Rare disease research has long been hobbled by the lack of funding from government agencies with broad mandates. As patients build real communities and organize their efforts, there is good reason to believe that many of these diseases can eventually be targeted and overcome.


Salisbury, Meredith. “Thanks to Social Media, Rare Progress on Rare Diseases – Techonomy.” Techonomy. N.p., 26 July 2016. Web. 18 Oct. 2016. <http://techonomy.com/2016/07/for-rare-diseases-social-media-can-achieve-rare-results/>.

Finding The Right Oncologist For You

finding-the-right-oncologist-for-youWhen you put your life in someone else’s hands, you need to feel completely comfortable and confident with that person – especially when that person is your oncologist. How do you go about finding the right one for you?

One of the best ways to find an oncologist is through referrals from people you trust, such as your primary care physician, family, friends, local hospitals or your insurance company. Many insurance plans allow their members to search doctors by name or specialty. The American Society of Clinical Oncology (ASCO) provides a free, searchable database of ASCO member oncologists. These doctors opt to make their information available to the public.

Other medical associations offering searchable databases:

Once you have collected and written down a few possible oncologists’ names, remember to ask yourself these three questions:

What are their credentials?

Board certification is one of the most important factors you should consider when choosing an oncologist. It assures you that the doctor has the necessary training, skills, and experience to provide healthcare in oncology. Additionally, choose a doctor that treats your specific type of cancer and has related experience with that disease. The more experience the doctor has with a certain cancer, the better your outcome will likely be. Your doctor’s hospital is your hospital, so don’t forget to research the quality of care offered at that location as well.

What blend of traits are important to you?

Languages spoken, gender, and education may be important to you. You may also have strong feelings about personality and bedside manner. Some people want their doctors to have a business-like manner, while others value a doctor who can help with their emotional health as well as their medical needs. Whatever your preferences, the most important thing is finding an oncologist with whom you are comfortable.

What is their communication style?

Choose a doctor that values and respects your questions and answers you in a way that you can understand. Clarity and candor are highly important characteristics for a doctor. Make sure that your doctor values both shared decision-making and the best available clinical evidence, as well as your personal values and preferences throughout your treatment.

Once you have found a doctor that meets all the above criteria, ask him or her for an introductory phone call before scheduling an appointment. You should interview your potential oncologist the same way you would interview a lawyer or an accountant. Don’t be afraid to set-up introductory calls or appointments with a few oncologists for comparison. You may also want to consider the size of your doctor’s staff and accessibility to clinical trials.

Alongside considering size of practice, clinical trials or proximity to home, make certain that your new oncologist is someone you can work closely with and trust. Your new doctor will become the most valuable member of your cancer team, so it is imperative that you choose a doctor with whom you are comfortable.


Resources:

http://www.cancer.net

https://www.healthgrades.com/explore/8-tips-for-choosing-an-oncologist

http://www.cancer.org/treatment/findingandpayingfortreatment/choosingyourtreatmentteam/choosing-a-doctor-and-a-hospital

Chronic Illness: Oh, the Stress of It All!

(Melissa is a patient, advocate, and runs her own website www.curegp.com)

Everyone must deal with stress from time to time, and that is not necessarily a bad thing. Stress can actually be beneficial when it is short-term and low-level. It can boost your energy and memory, act as a motivator, and even enhance your physical strength. But those of us with chronic illness often battle prolonged stress, with few or no breaks, and this can be quite detrimental to our health. There is a growing body of evidence that indicates this type of stress can lead to serious health issues such as heart disease, migraines, stomach problems, high blood pressure, and depression. In order to avoid, or at least minimize these possible risks and effects, it is important to know how to recognize and manage potentially harmful stress.

Coping with stress can be particularly difficult for those of us living with chronic illness because of its long-term and serious nature. It comes with additional stressors that most other people do not face, and there is rarely a respite from these. Diagnosis is often accompanied by fear, confusion, and disbelief. Some of us experience apprehension because we feel we have not been given a proper initial explanation of our condition or enough information to manage it effectively. Conversely, there is commonly an overload of information to process regarding our numerous medications and the complex medical routines we must follow. We are often shocked by the overwhelmingly difficult lifestyle changes required of us. Upon initial diagnosis, many of us are confused and upset about the nature of our illness, its causes, its symptoms, our prospects for treatments or a cure, and the measures that will be required of us to accommodate the effects of our illness. We fear what the future holds.

There are other complications that concern us as well. It can be difficult to find a doctor who can (or will) treat us, and we must sometimes interact with several different physicians who manage our care. On occasion, we receive conflicting advice and recommendations from the medical professionals providing for our treatment. In times of medical crisis, we face decisions about whether it is appropriate to treat our illness at home, see our doctor, or perhaps visit the emergency room. Many of us struggle to find medications and treatments that work for us and must determine this through trial and error. Once we find helpful medications and treatments, we may face difficulty in gaining access to them and at times must battle with insurance companies who deny us coverage or physicians who hesitate to prescribe them. It can all be pretty overwhelming.

In addition to the hardship of dealing with the day-to-day management of the actual symptoms themselves, there are long-term concerns. Severe symptoms can eventually interfere with one’s social life and even jeopardize one’s career. Friends and family members may have unrealistic expectations about what a chronically ill person is capable of, and often, we ourselves have these same unrealistic expectations. We are regularly too sick to participate in social activities, and we feel much guilt over our withdrawal from social functions and gatherings we once found enjoyable. We may begin to feel increasingly cut off and isolated from the friends and family members we once knew. If serious enough, symptoms can result in missed days of work and eventual unemployment, which can lead to monetary woes. The loneliness, seclusion, and financial strain associated with these factors act as additional stressors and make it all the more difficult for those of us who are chronically ill to cope.

Indeed, life with chronic illness can be burdensome and stressful. Nonetheless, there are methods of averting or minimizing many of the factors that contribute to our stress. For starters, we can make an effort to prevent stress from occurring in the first place by educating ourselves. Searching the Internet, reading articles, asking questions of our doctors, and seeking out others with the same condition helps provide us with insight into our illness. It minimizes the fear of the unknown that accompanies our diagnosis and gives us an idea of what to expect in terms of symptoms, treatments, possible complications, and prognosis. It helps us recognize what is “normal” for our condition and what is cause for concern and aids us in preparing for what might be coming down the road.

We can also do our best to maintain a healthy lifestyle. (I am not suggesting we can attain perfect health; I am simply recommending doing whatever we can to be as healthy as possible given the limitations of our illnesses.) This might mean taking vitamins and supplements, exercising, making the most nutritious food/drink choices possible, getting adequate rest, and taking our medications as recommended.

In addition, we can work toward strong mental health. Rather than expecting “perfect” lives, we can focus on the good we have and be grateful for the small, joyful moments. Likewise, we can learn to manage the circumstances in our lives that can be governed and adapt to the ones beyond our command. (We may not be able to attend courses on a college campus, for example, but perhaps we can take online classes. Maybe we cannot make it to the movie theater, but we can view videos in the comfort of our own homes.) We can also forgive ourselves for our perceived shortcomings and pardon others for not acknowledging our limitations. We cannot control missing an event due to illness, but we can refuse to feel guilty and accept that we cannot “will” ourselves to be well. Our illnesses are real, and they come with genuine physical limitations.

Finally, we can learn to recognize the signs of harmful stress (i.e., mental confusion, anxiety, worry, depression, fatigue, altered sleep patterns) and seek help when we feel discouraged and defeated by joining support groups; talking to trusted friends, family members, and neighbors; or pursuing professional counseling. We can engage in pleasurable activities – such as reading, writing, listening to music, playing board games, etc. – that momentarily distract us from our debilitating symptoms. We can read encouraging books or practice relaxation techniques like yoga and meditation. We can ask loved ones for assistance or consider employing home helpers/aides to lend a hand with household chores or other tasks we have difficulty completing. Perhaps we can identify government and charitable programs (for prescription aid, low-income housing, reduced-cost medical care, and the like) that might ease our financial burdens.

We may not be able to entirely avoid the stress that results from our complicated and sometimes overwhelming circumstances, but we can learn to manage it. As chronic illness warriors, we face a constant, daunting battle against stress – but it is not one we must necessarily lose.

Importance of An Accurate Diagnosis and Exciting New Drugs For NHL

Interview with Andrew Zelenetz, MD, PhD, Medical Oncology Memorial Sloan Kettering Cancer Center

From the 14th annual International Workshop on Non-Hodgkin Lymphoma, Dr. Andrew Zelenetz was first interviewed about how it is absolutely critical to receive an accurate diagnosis. He shares that about 17% – 20% of diagnoses change in a way that effect the therapy chosen. Next, he explains some of the exciting new drugs being used to combat NHL. Watch the full videos below to hear from a NHL expert.

The Importance of An Accurate Diagnosis from Patient Empowerment Network on Vimeo.

Dr. Zelentez Shares Promising News For Lymphoma Patients from Patient Empowerment Network on Vimeo.

Interview with NHL Expert Dr. Steven Rosen

Interview with Steven Rosen, MD; Provost and Chief Scientific Officer, City of Hope

From the 14th annual International Workshop on Non-Hodgkin Lymphoma (iwNHL), Dr. Steven Rosen was interviewed about the different types, biological treatment options, and the patient’s role in Non-Hodgkin Lymphoma. Watch the full videos below to hear all of Dr. Rosen’s insight.

What Are The Types of NHL? from Patient Empowerment Network on Vimeo.

Biologic Treatment Options For Lymphoma from Patient Empowerment Network on Vimeo.

What Can Patients Do For Themselves During Treatment? from Patient Empowerment Network on Vimeo.

Importance of A Healthy Lifestyle and Diet With Cancer from Patient Empowerment Network on Vimeo.

iwNHL Conference Main Takeaways

Panel Interview with John Gribben, MD, Professor of Experimental Cancer Medicine Barts Cancer Institute, Simon Rule, MD, Professor in Hematology Plymouth University, and Owen O’Connor, MD, PhD, Professor of Medicine and Experimental Therapeutics Columbia University

From the 14th Annual International Workshop On Non-Hodgkin Lymphoma (iwNHL), Dr. Gribben leads the panel discussion alongside Dr. Rule and Dr. O’Connor about the different treatment options and the notion of “chemotherapy-free” treatments for Non-Hodgkin Lymphoma patients. Next, the panel moves on to the drugs available and some of the side effects associated with them. Watch the full video below to hear from three NHL experts.

NHL Cancer Expert Roundtable from Patient Empowerment Network on Vimeo.

Sajjad Iqbal

Board Member

Sajjad is a physician, pediatrician and cancer survivor.

Almost 17 years ago, Sajjad diagnosed himself with parotid cancer. After extensive surgery to remove the cancerous cells from his parotid gland, Sajjad learned that he had an extremely rare and most malignant type of parotid cancer called Salivary Duct Carcinoma.  He was given a 30% chance of surviving for 2 years.

Because of Sajjad’s medical training and his unwavering sense of hope & determination, he was no ordinary patient.  He decided to take charge of his own treatments, to learn everything he could about his diagnosis and visit multiple experts across the country. Sajjad pushed for more aggressive chemo-radiation in addition to the radiation he was already receiving in hopes of reducing his chances of recurrence. When the cancer returned four years later, he knew the correct drug to keep the cancer cells from growing while he determined the best next steps. Almost two years later, Sajjad proposed Video Assisted Thoracic Surgery after several new cancerous spots appeared in both lungs.

The cancer never returned to Sajjad’s lungs, but instead attacked his bones three years after his final lung surgery. Never one to give up, Sajjad researched his condition and proposed a treatment method for himself that stopped the progression of cancer cells. Although Sajjad is still living with, and still fighting, the cancer, he continues to defy the odds with no end in sight.  He is the longest known survivor with Salivary Duct Carcinoma.

Sajjad’s background includes a medical degree from Pakistan and residencies at New York Infirmary, St. Luke’s Hospital and New York University Medical Center.  Sajjad is now retired from active medical practice and devotes all his time to cancer patients advocacy and support.

To inspire other cancer patients, Sajjad Iqbal has chronicled his amazing cancer journey in the form of a book titled, “Swimming Upstream, My Struggle and Triumph over Cancer and Medical Establishment.”

LaWanda Byrd

Board Member

LaWanda is the Director of Volunteer Services at the Moffitt Cancer Center where she manages the daily operations of her department, including volunteer recruitment, retention, training, engagement and productivity. She is also responsible for the Pet Therapy program and Cancer Center retail operations. Prior to her work in Volunteer Services, LaWanda spent seven years in Environmental Services, dedicated to keeping patients safe through the management of 2 million square feet over multiple sites.

LaWanda’s work at the Moffitt Cancer Center is supplemented by her volunteer contributions and expert presentations. She has presented on topics ranging from Best Practices in Healthcare Environmental Services to Diversity in Healthcare Delivery at multiple summits and conferences. LaWanda has volunteered with the Association of Florida Healthcare Auxiliaries and the American College of Healthcare Executives.

LaWanda’s background includes a certification as a Diversity Professional from Cornell University. She also holds a Masters of Public Administration and a B.A. in Political Science from Michigan State as well as a Masters of Business Administration from St. Leo University.

Nancy Gatschet

Board Member

Nancy has over 35 years of leadership experience in consumer and commercial banking. Nancy holds her BA from the College of William and Mary in German, and was lucky enough to study one year at the University of Salzburg in Austria. In addition to some post-graduate work at Drexel University, she has held the Series 7, 66 and 21 financial licenses as well as life and health insurance licenses. Nancy is a lifelong volunteer, serving as cubmaster, cookie mom, Sunday School teacher, feeding the homeless, walking Town Watch, serving on the boards of several community organizations as well as the national board of the National Lung Cancer Partnership. She founded the Pennsylvania Lung Cancer Partnership raising $1.5 million in 6 years statewide. Nancy has a son serving in the Army and a daughter working on her MS in nutrition, and 1 grandchild from each. Nancy relocated to San Diego in late 2013 from Philadelphia to join her daughter here on the west coast. She lives in Point Loma with her bichon and chihuahua boys, and operates Happy Paws of San Diego, a dog walking/pet sitting business. She volunteers with Advocates for Classical Music introducing elementary school children to classical music prior to their attending a symphonic performance designed for kids, serves as Board Secretary and Vocational Chair with the La Jolla Golden Triangle Rotary, and serves on the Development Committee with LungForce (ALA).