NHL Newly Diagnosed Archives

Your NHL diagnosis is just a starting point. Even though the path ahead may seem unclear or even insurmountable, armed with knowledge you can take control.

Let us help you become empowered to understand your diagnosis, to confidently ask questions, and to identify providers that are the best fit for you.

More resources for Non-Hodgkin Lymphoma (NHL)Newly Diagnosed from Patient Empowerment Network.

How to Weigh Up the Benefits and Risks of Treatment…and Why It’s Important That You Do

Do clinicians have accurate expectations of the benefits and harms of treatments and screening tests?

new study in JAMA Internal Medicine concludes not. In a systematic review of 48 studies (13 011 clinicians), the researchers found that clinicians rarely had accurate expectations of benefits or harms, more often underestimating harms and overestimated benefits. Among the findings, obstetricians and neurologists underestimated the risk of birth defects from anti-epileptic drugs and GPs overestimated the benefit of prostate cancer screening. Transplant surgeons were biased towards an inaccurately low estimate of graft failure and all types of doctors were unaware of the risk of radiation exposure from imaging.

What do these findings mean for patients? Inaccurate clinician expectations of the benefits and harms of interventions can profoundly influence decision making and the standard of care patients receive. Patient activist, blogger, and author of the upcoming book “Heart Sisters: A Survivor’s Take on Women and Heart Disease” (Johns Hopkins University Press, November 2017), Carolyn Thomas, believes this to be “a consistently systemic issue for patients, too: most believe medical interventions will help more/harm less than they actually do”. It’s a wake-up call for patients who have a critical role to play in understanding and weighing up benefits and risks for ourselves, in order to get better treatment. And it’s a further reminder of the importance of shared decision making to reach a healthcare choice together, as opposed to clinicians making decisions on behalf of patients.

However, understanding the risks associated with a treatment is not necessarily straight-forward. The challenge for busy clinicians is that there isn’t always the time to read and digest the latest research to inform their practice. Medical commentator, physician, and cancer survivor, Elaine Schattner, believes that because medical knowledge changes so rapidly it’s hard for clinicians to keep pace. “This may be especially true in oncology,” she points out, “as patients become expert in their own conditions and needs, they may prefer to look up information on their own, and share their findings with their physicians.”

A lengthy article published this month in ProPublica, examines what it calls “an epidemic of unnecessary and unhelpful treatment” requested by patients and delivered by doctors, even after current research contradicts its practice. “It is distressingly ordinary for patients to get treatments that research has shown are ineffective or even dangerous”, writes David Epstein. “Some procedures are implemented based on studies that did not prove whether they really worked in the first place. Others were initially supported by evidence but then were contradicted by better evidence, and yet these procedures have remained the standards of care for years, or decades.” Epstein points to a 2013 study which examined all 363 articles published in The New England Journal of Medicine over a decade — 2001 through 2010 — that tested a current clinical practice. Their results, published in the Mayo Clinic Proceedings, found 146 studies that proved or strongly suggested that a current standard practice either had no benefit at all or was inferior to the practice it replaced. Of course, this is not to say that myriad treatments don’t indeed improve and save lives, but it’s important to ask questions and do your own research before making a decision on which treatment is the best for you.

Start by asking your doctor to explain all the treatment options open to you, including what would happen if you do nothing. Recognise that all treatments are inevitably associated with some risk of possible harm. Ask your doctor to quantify that risk beyond a purely descriptive term, such as “low risk” (what your doctor considers a small and acceptable risk may be unacceptable to you). Next, do your own research. In order to make an informed decision, you will need to gather reliable information on which to base your choice. Fully exploring the risks and benefits of treatment involves doing your own evidence-based research (using evidence from medical studies that have looked at what happens to many thousands of people with your condition). In a previous article, I shared with you some helpful guidelines for assessing medical information. Most media reports about the benefits of treatments present risk results as relative risk reductions rather than absolute risk reductions, so you will need to understand the difference. Absolute risk of a disease is your risk of developing the disease over a time period. We all have absolute risks of developing various diseases such as heart disease, cancer, stroke, etc. Relative risk is used to compare the risk in two different groups of people. For example, research has shown that smokers have a higher risk of developing heart disease compared to non-smokers. Ask your doctor to differentiate between absolute and relative risk. Check out the NNT website which provides non-biased summaries of evidence-based medicine. “NNT” stands for a statistical concept called the “Number-Needed-to-Treat” – as in “How many patients need to be treated with a drug or procedure for one patient to get the hoped-for benefit?” The core value of the NNT is its straightforward communication of the science that can help us understand the likelihood that a patient will be helped, harmed, or unaffected by a treatment. It provides a measurement of the impact of a medicine or therapy by estimating the number of patients that need to be treated in order to have an impact on one person. Because we know that not everyone is helped by a medicine or intervention — some benefit, some are harmed, and some are unaffected, the NNT tells us how many of each.

You may also want to hear about what other people with your condition have chosen to do and what their experience has been. But remember that just because something has/hasn’t worked for someone else, it doesn’t mean it will/won’t work for you. Orthopedic surgeon, Dr Nicholas DiNubile, recommends patients ask their doctors, “If this were you, or one of your immediate family members, what would you do and/or recommend?” While this may be useful, you must ultimately decide what benefits and risks are important to you. Can you tolerate the side-effects? Are you happy with the way the treatment is administered? Would you find it stressful to live with the risk of any serious side effects, even if the risk is small? What matters is whether you think that the benefits outweigh the risk of any side effects. Everyone is different. The treatment recommended for you may not be the best treatment for your particular lifestyle. Being an advocate for your own health care involves asking lots of questions, doing your own research, and making your preferences known to your doctor. By doing this, you will be better informed and in a stronger position to get the treatment that is right for you.


Related Reading
Clinicians’ Expectations of Treatments, Screening, and Test Benefit and Harm
The three questions that every patient should ask their doctor
Strategies to help patients understand risks

ePatient Virtual Courses

The ePatient virtual classrooms are designed to empower patients in all their healthcare matters.

ePatient 101

ePatient101: How to be an Empowered Patient, is an online course for anyone interested in becoming an empowered patient, empowered caregiver, or patient advocate. Through this online course taught by Alex Barfuss, you will learn:

  • The meaning of the term “ePatient”
  • Why being an ePatient is so important in today’s healthcare system
  • How you can save time and money and get better overall value from your health care providers
  • How to advocate for yourself
  • Tools, tips and best practices to help manage your or your loved one’s chronic disease

Caregiver 101

Caregiver 101 is full of useful tools for caregivers and taught by Caregiving.com founder, Denise Brown. By taking this course, you will learn:

  • How the carer/caree relationship can be a health relationship
  • How to find balance
  • How to find more time for your self
  • How to ask for support
  • Tips, tools, and tactics to be a better carer/caree
  • Curated links and resources
  • Videos
  • Knowledge quizzes
  • Support from a community of caregivers at cargiving.com

Chronic Lymphocytic Leukemia (CLL) 101

We are excited to be partnering up with Intake.me to bring you CLL 101. We wanted anyone struggling with a recent CLL diagnosis to become empowered through knowledge and support. By taking this course, you will receive:

  • An overview of CLL
  • Facts about CLL
  • Curated links and resources
  • Videos
  • Knowledge quizzes
  • Printable checklists with questions to ask your doctor
  • Why you should immediately get a second, expert opinion
  • Tips on building your healthcare team, and how your local doctor can work with a CLL expert to provide the best treatment
  • Where to find the latest CLL research, clinical trials, and other treatment options
  • Ability to ask questions from other CLL 101 students

These courses are part of the Intake.me experience and are free to everyone. You can sign up be clicking one of the buttons below. Enjoy!

Mobile Doctor’s Appointments? Do They Work?

Dr. On Demand Dashboard

Dr. On Demand Dashboard

Hate the doctor’s office and don’t want to go to Urgent Care or the E.R.? There’s an app for that. Doctor On Demand is a mobile application that allows you to have a video appointment with a doctor from your own home. On their website they claim, “At Doctor On Demand we provide fast, easy and cost-effective access to some of the best doctors, psychologists, and other healthcare providers in the country. Our patients can have Video Visits with these providers on their smartphone or computers at any time of day.” Recently a friend of mine used this app for the first time because of a strange lump in her armpit, so I decided to sit in to see what it was all about and if it can actually replace an in-person visit.

Before

First thing you do is download the app, create an account, and fill out your health and insurance information. Then, you are given the option to choose a specific doctor or specific time. If you chose the specific time route, you are assigned a doctor. My friend chose a specific time and told me that it was a very easy, user-friendly process. To prepare for the appointment, you fill out all your symptoms and take pictures of your problem (if applicable) to have on hand. I asked my friend why they chose Doctor On Demand over a traditional doctor, Urgent Care, or E.R., and she said this way she won’t have to waste time stuck in a doctor’s office, could be seen quicker, and the appointment times worked better with her work schedule. However, she was hesitant because the doctor would not be able to feel or see the issue in person, which may affect the diagnosis.

During

Once your call begins, the doctor begins by reviewing your chart before coming on camera. Next, the doctor comes on camera and asks to explain the problem and the symptoms she was having. The appointment is set up like a FaceTime call. The doctor assigned to my friend was very friendly and attentive. This when those photos you took beforehand are useful because then she asked my friend to upload the photos for her to look at.

After

After the issue was thoroughly explained, the doctor was unable to diagnose what was going on without further testing. She did explain the several possibilities of what could be occurring and what tests may be needed. However, in the end the doctor did recommend that my friend go see a doctor in-person to get an accurate diagnosis.

Overall

In conclusion, my friend was reassured that it didn’t require immediate attention and that she shouldn’t worry. She also felt better and more relax about the few days it would be before she could be seen by a doctor. She and I would both recommend using Dr. On Demand, especially for the simpler alignments, such as colds, because the doctors are able to write prescriptions to your local pharmacy saving you the time wasted in a waiting room. My friend had this to say about her overall experience:

“This was a quick solution to put my mind at ease that something more serious was not going on before I was able to schedule an in-person doctor’s appointment”

15 Tips To Get the Most From Your Doctor’s Visit

beautyHave you ever had the experience of leaving the doctor’s office wishing you had remembered to ask a certain question? Or have you left it until the very end to tell your doctor about the real reason for your visit? These so-called “doorknob” questions – bringing up an important concern just as you are leaving the office – can mean your doctor won’t have time to adequately address your concerns. When the average time it takes for a doctor’s visit is fifteen minutes, it’s easy to feel rushed and forget what you wanted to say, or to leave an appointment unsure of the information you have heard. But with a little advance preparation you can learn how to make the most of those fifteen minutes. Follow these fifteen tips to become a more empowered and engaged partner in your own health – and the health of those you care for.

1. When you call to make your appointment, explain clearly why you need to see the doctor. Let the receptionist know how much time you will need to schedule for the visit. If you have any special needs, such as wheelchair access or interpretive needs, let the office know in advance.

2. Be sure to that where you make your appointment accepts your insurance. You can call or go online to your insurance website to see a directory of in-network providers.

3. If this is your first visit to a new physician, gather together any past medical records and family medical history to take along with you.  If you’re seeing other doctors and have information they’ve provided, bring this along too.

4. Write down a list of your symptoms before the visit. It’s a good idea to keep a diary so you can chart your symptoms over time. Include details of the type of symptoms you are experiencing, when these symptoms began, and what makes them better or worse.

Use this common medical mnemonic to guide you.

(O)-P-Q-R-S-T

  • Pain (“Where does it hurt?”)
  • Quality (“What does it feel like?”)
  • Radiation (“Does it move anywhere?”)
  • Scale (“How bad is it? How much does it affect you?”)
  • Timing (“When did it start? How long does it last? Does it come and go? Is it gradual or sudden in onset? What makes it better or worse?”)
  • Other (“Any other symptoms?”)

5. Set the agenda at the start of your visit. Did you know that a patient has an average of 23 seconds to state their concerns before a physician interrupts? According to an article published in The Journal of the American Medical Association, only 28% of doctors know their patient’s full spectrum of concerns before they begin to focus on one particular concern, and once the conversation is focused, the likelihood of returning to other concerns is only 8%. Doctors have a limited amount of time for office visits. In order to use their time wisely they usually set the agenda and control the visit as much as possible. To avoid this happening to you, prepare in advance the top two or three concerns you want to raise with your doctor. Are you looking for a diagnosis? Do you need a new treatment plan or a modification of an existing plan? Are you looking for help with feelings of fatigue or depression? Don’t forget to describe your emotional state and any personal circumstances which may influence your physical health. Write down your main concerns so you are ready to verbalize them clearly at the beginning of  your visit.

6. If you use a self-tracking device, like a Fitbit, download your data and summarize the findings beforehand.

7. Bring a list of all medications you are currently taking, including over-the-counter medications, vitamins, herbs, or supplements. If you have a smart phone or tablet, it’s useful to take pictures of your medication and supplement labels to show the doctor.

8. During your visit, tell your doctor you would like to take notes. If you would prefer to record your notes via your smartphone, ask your doctor if it is ok to do so.

9. Medical care is a conversation. So to have influence in that conversation you have to speak up. If you don’t want the treatment your doctor recommends (or you’re not sure), it’s reasonable to ask if there are other treatment options available. Never be embarrassed to tell your doctor if you don’t understand something she has said. Sometimes doctors use medical jargon without realizing they are not explaining things in terms we understand. Repeat what the doctor has told you to be sure you understand and ask for clarification if needed

10. If you find it difficult to speak up for yourself, or you are facing a potentially challenging diagnosis, bring a friend or family member along for support. This person can also take notes and help you remember what was discussed later.

11. Always be honest with your doctor. You may not like to admit how much you drink, or smoke, or if you have stopped taking your medication because of expense or side effects, but your doctor needs to know about these and other lifestyle matters to ensure you are receiving optimum care.

12. Ask you doctor to explain any test results to you, Request a copy of the results for your own files.

13. Before you leave, be sure you understand what needs to happen next. Do you need any further diagnostic tests? When will you get the results? If you have just received a diagnosis, what are your treatment options? If you have questions or concerns later how should you contact your doctor? You can also ask if your doctor recommends any specific reading materials or websites about your condition.

14. If you have been given a prescription for a new medication, do you understand how and when the medication should be taken? Are there any side-effects, for example drowsiness, you should watch for? How will you know if the medication is working? What happens if you miss a dose?

15. After your visit, review and file your notes along with any test results or other documentation and billing you received. Schedule any follow up tests or appointments right away.

Your relationship with your doctor is one of the most important you have. Advance preparation will help you use your own time and your doctor’s time more efficiently and effectively. When people take an active role in their care, research shows they are more satisfied and do better in how well treatments work. Preparing for your doctor’s visit is an important step toward becoming a partner in your own health care and a better advocate for your health and well-being.

Day 8: Non Hodgkin Lymphoma

Editor’s NoteThis blog was originally written and posted for HealthUnlocked here.

This Christmas, we have partnered up with HealthUnlocked to participate in their 12 Days of Christmas campaign. This campaign features twelve different health and wellbeing conditions and their online communities.


Day 8: Non Hodgkin LymphomaHU day 8

Non-Hodgkin Lymphoma (also known as Non-Hodgkin’s Lymphoma, NHL, or sometimes just Lymphoma) is a cancer that starts in cells called lymphocytes (a type of white blood cell), which are part of the lymphatic system. This system – composed of lymph nodes in your neck, armpits, groin, chest, and abdomen – removes excess fluids from your body and produces immune cells. Abnormal lymphocytes become lymphoma cells, which multiply and collect in your lymph nodes. Over time, these cancerous cells impair your immune system.

NHL is one of the most common cancers in the United States, accounting for about 4% of all cancers. The average American’s risk of developing NHL during his or her lifetime is about 1 in 50 – that’s about 72,580 this year alone.

Key Facts on NHL

  • Lymphomas are divided into two categories: Hodgkin Lymphoma and Non-Hodgkin Lymphomas. About 88% if people with lymphoma have Non-Hodgkin Lymphoma
  • There are two main types: B-Cell Lymphoma or T-Cell Lymphoma – but there are about 60 subtypes
  • Overall survival at five years is more than 60%, according to the National Cancer Institute
  • NHL most often starts in the lymph nodes in the upper part of the body – in the neck or chest or under the arms
  • It can spread through the lymph system to other lymph nodes and outside the lymph nodes to the bone marrow, lungs, or liver
  • There is no known cause of NHL, but there are several factors that may increase risk, such as a weakened immune system from an inherited disease, autoimmune disease, HIV, or drugs given because of an organ transplant, and certain viruses or chemicals
  • NHL occurs more often in patients between the ages of 40 and 70

 Symptoms of NHL

  • Swollen lymph nodes and/or abdomen
  • Chest pain or pressure
  • Shortness of breath or cough
  • Fever or night sweats
  • Weight loss or fatigue
  • Low red blood cell counts

 

Join an online Non-Hodgkin’s Lymphoma community within HealthUnlocked today. Get support, help, and information from people who also have the condition.

Least Invasive First

Dr. Winn Sams

Dr. Winn Sams

Editor’s Note: This blog was written by Winn Sams, D.C. Dr. Sams practices in Columbus, NC a small town snuggled in the foothills of the western part of the state.  A native of Charlotte, NC with a B.A. in Economics from the University of North Carolina- Chapel Hill, Dr. Sams graduated from Sherman College of Chiropractic in 2002 summa cum laude and valedictorian of her class. From her own experience where personal health directives and choices were not heard nor respected, she decided to create a site where uniqueness and diversity could be anchored in healthcare. Being a healthcare provider, she knew how important it is for the “whole” person to be not only known, but included in a plan of care. Thus, Least Invasive First was born.


Recently, my youngest daughter broke her right arm and dislocated her elbow. The ER referred her out to an orthopedist nearby. We showed up at the appointment with a lot of questions and wanting to know what our options were. The doctor entered the room, did not make eye contact with me nor my daughter’s friend, who was sitting next to me. His handshake was a mere extension of his hand to us (friend and myself), kind of like a king might do to his subjects to kiss his ring. He said he would like to order a CT scan of my daughter’s elbow and do surgery. I asked were there any other options and he said “No” and that he would be back in a few minutes. He never came back, but his nurse showed up to schedule the surgery. I was furious and let her know my dissatisfaction, clearly acknowledging that it wasn’t her fault, but we would not be coming back.

Now, you have to understand I am a Doctor of Chiropractic. I see patients every day and I would never treat anyone the way we were treated. There was no informed consent , no shared decision making in developing a treatment and no respect for who my daughter was (or us for that matter) as a unique person seeking care. EVERYONE deserves all of the above! So, we left that office and made an appointment with another Orthopedist, who was absolutely fabulous. Our experience was night and day from the first one. We felt like we were a part of creating our plan of care, throughout the whole appointment and were at peace with the planned surgery, leaving there feeling like we were in good hands.

My concern is this. When we are in pain or an emergency situation, we usually are not thinking straight. We just want someone to help us get out of pain and/or tell us what is wrong. We may accept the first Doctor that we encounter, as he/she knows more than us. As far as what a Doctor is taught in school, the knowledge of how the body works and their expertise/experience, that is true. HOWEVER,  the patient still has to be included in the whole process, otherwise, you are giving your power over to someone to do as they deem fit TO you. That is a recipe for disaster.

Data and evidence based science measure outcomes that can be repeated. That is a big help when trying to choose a plan of action, but healing and how our bodies RESPOND to said procedures or medications is not an exact science. This is where our uniqueness comes in. Some people are allergic to medications or do not need to start out with the highest dose, as their bodies may actually react unfavorably to what may be the standard practice. Some people would like to try other options first, if possible. In the best interest of all, seeing how that choice works and then moving on to more invasive choices if necessary. It is imperative that your Doctor know as much about ALL of you to make the best plan of care. But, you don’t have to back down or be ashamed of your choices if they don’t match up with your provider’s. Remember, a Doctor is only a person ( yes, just a person like you and I) who has certain training and experience in particular fields. You cannot assume that your Doctor has your best care in mind, when they don’t have a clear picture of who you are on all fronts.

So, with all of this in mind, I developed a site called Least Invasive First, www.leastinvasivefirst.org, where you can keep all of your advance health directives and info in one place, with everything digitally accessible at any time. You can upload forms and/or pictures into your profile that provide information, that in especially stressful times, you have available at the click of a button. Medications can be listed with dosage, so you can edit them as they change. You can also give your username and password information to a family member, so they have access to your information if you are unresponsive or not able to make decisions for yourself. There are a lot of creative ways that this service can be used.

Fortunately, this concept works well for the Doctor and/or hospital side too. I have interviewed many of both and all have voiced a resounding affirmation that information the patient provides would be a tremendous help. I am glad to offer a way to potentially change healthcare and it starts with you!

 

 

 

What Records Should You Bring For A Second Opinion Appointment?

From the Lung Cancer Town Meeting in September 2016, Janet Freeman-Daily interviews a panel of lung cancer experts about what are the essential records patients should bring to their appointment when getting a second opinion. 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 of the experts advice.

What Records Should Your Bring For A Second Opinion Appointment? from Patient Empowerment Network on Vimeo.

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.

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

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.

Shared Decision Making: Putting the Patient At The Center of Medical Care

“Tell me and I forget. Teach me and I remember. Involve me and I learn” – Benjamin Franklin

As gravity shifts away from health care providers as the sole keeper of medical information, the importance of sharing decisions, as opposed to clinicians making decisions on behalf of patients, has been increasingly recognized. Shared decision- making (SDM) is the conversation that happens between a patient and clinician to reach a healthcare choice together. Examples include decisions about surgery, medications, self-management, and screening and diagnostic tests. While the process commonly involves a clinician and patient, other members of the health care team or friends and family members may also be invited to participate. The clinician provides current, evidence-based information about treatment options, describing their risks and benefits; and the patient expresses his or her preferences and values. It is thus a communication approach that seeks to balance clinician expertise with patient preference.

Dr Mohsin Choudry describes shared decision-making as “a way of transforming the conversation between doctors and their patients so that the thoughts, concerns and especially the preferences of individuals are placed more equally alongside the clinician’s expertise, experience and skills.” Before physicians can really know what the proper treatment is for a patient, they must understand the particular needs of their patients. This approach recognises that clinicians and patients bring different but equally important forms of expertise to the decision-making process. The clinician’s expertise is based on knowledge of the disease, likely prognosis, tests and treatment; patients are experts on how a disease impacts their daily life, and their values and preferences. For some medical decisions, there is one clearly superior treatment path (for example, acute appendicitis necessitates surgery); but for many decisions there is more than one option in which attendant risks and benefits need to be assessed. In these cases the patient’s own priorities are important in reaching a treatment decision. Patients may hold a view that one treatment option fits their lifestyle better than another. This view may be different from the clinician’s.  Shared decision-making recognises a patient’s right to make these decisions, ensuring they are fully informed about the options they face. In its definition of shared decision-making, the Informed Medical Decisions Foundation ,  a non-profit that promotes evidence-based shared decision-making, describes the model as “honoring both the provider’s expert knowledge and the patient’s right to be fully informed of all care options and the potential harms and benefits. This process provides patients with the support they need to make the best individualized care decisions, while allowing providers to feel confident in the care they prescribe.”

By explicitly recognising a patient’s right to make decisions about their care, SDM can help ensure that care is truly patient-centered. In Making Shared Decision-Making A Reality: No Decision About Me Without Me, the authors recommend that shared decision-making in the context of a clinical consultation should:

  • support patients to articulate their understanding of their condition and of what they hope treatment (or self-management support) will achieve;
  • inform patients about their condition, about the treatment or support options available, and about the benefits and risks of each;
  • ensure that patients and clinicians arrive at a decision based on mutual understanding of this information;
  • record and implement the decision reached.Screen Shot 2015-10-29 at 4.43.27 AM

The most important attribute of patient-centered care is the active engagement of patients in decisions about their care.
“No decision about me, without me” can only be realised by involving patients fully in their own care, with decisions made in partnership with clinicians, rather than by clinicians alone. This has been endorsed by the Salzburg Statement on Shared Decision Making, authored by 58 representatives from 18 countries, which states that clinicians have an ethical imperative to share important decisions with patients. Clinical encounters should always include a two-way flow of information, allowing patients to ask questions, explain their circumstances and express their preferences. Clinicians must provide high quality information, tailored to the patient’s needs and they should allow patients sufficient time to consider their options. Similarly, in Shared Decision Making: A Model for Clinical Practice, the authors argue that achieving shared decision-making depends on building a good relationship in the clinical encounter so that patients, carers and clinicians work together, in equal partnership, to make decisions and agree a care plan. According to the Mayo Clinic Shared Decision Making National Resource Center, this model involves “developing a partnership based on empathy, exchanging information about the available options, deliberating while considering the potential consequences of each one, and making a decision by consensus.” Good communication can help to build rapport, respect and trust between patients and health professionals and it is especially important when decisions are being made about treatment.

Decision Aids

One of the most important requirements for decision-making is information. There are a number of tools available to support the process such as information sheets, DVDs, interactive websites, cates plots or options grids. Decision aids that are based on research evidence are designed to show information about different options and help patients reach an informed choice. The Mayo Clinic has been developing its own decision aids since 2005 and distributing them free of charge to other health care providers. For instance, Mayo’s Diabetes Medication Choice Decision Aid helps patients choose among the six medications commonly used to treat type-2 diabetes. Patients choose the issues that are most important to them, for example, blood sugar control or method of administration —and then work with their physicians to make comparisons among the drugs, based on the chosen criterion.

Discussing their options and preferences with health professionals enables patients to understand their choices better and feel they have made a decision which is right for them. Research studies have found that people who take part in decisions have better health outcomes (such as controlled high blood pressure) and are more likely to stick to a treatment plan, than those who do not.  A 2012 Cochrane review of 86 randomized trials found that patients who use decision aids improve their knowledge of their treatment options, have more accurate expectations of the potential benefits and risks, reach choices that accord with their values, and more actively participate in decision making. Instead of elective surgery, patients using decision aids opt for conservative options more often than those not using decision aids.

Barriers to Shared Decision-Making

Barriers to shared decision-making include poor communication, for example doctors using medical terminology which is incomprehensible to patients; lack of information and low health literacy levels. It is worth noting that not everyone wants to be involved in shared decision making with their doctors; and not every doctor wants to take the time. Some patients come from cultural backgrounds that lack a tradition of individuals making autonomous decisions. Some health professionals may think they are engaged in shared decision-making even when they are not.

Shared Decision-Making – An Ethical Imperative

With this proviso in mind, it is nevertheless clear that the tide is turning toward more active patient participation in decisions about health care. Research has shown that when patients know they have options for the best treatment, screening test, or diagnostic procedure, most of them will want to participate with their clinicians in making the choice. A systematic review of patient preferences for shared decision making indicates 71% of patients in studies after 2000 preferred sharing decision roles, compared to 50% of studies before 2000.  The most important reason for practising shared decision-making is that it is the right thing to do. The Salzburg Statement goes so far as to say it is an ethical imperative and failure to facilitate shared decision-making in the clinical encounter should be taken as evidence of poor quality care. Evidence for the benefits of shared decision-making is mounting. Providing patients with current, evidence-based information, relevant decision aids and giving them time to explore their options and work through their concerns, will help patients choose a treatment route which best suits their needs and preferences, and ultimately lead to better health outcomes for all.

How to Develop a Personal “Medical Résumé”

When people are applying for jobs, they develop a résumé. This document has all the important details regarding their work history, education, etc. Patients need a résumé too! However, patient résumés are different. Employment résumés are created to get great jobs; medical résumés are created to acquire great healthcare experiences.

In early 2007, my mother was diagnosed with Alzheimer’s Disease. My mother also had many other medical issues, including diabetes, hypertension, colon cancer and atrial fibrillation. My mother was on many medications and saw many different doctors from various health systems. It was challenging managing my mother’s care, until I developed two pieces of paper that changed everything! I created the “medical résumé.”

According to the Joint Commission, the organization that accredits healthcare organizations, the biggest cause of medical errors is botched handoffs. A handoff is a transition of care, such as going from a hospital to a rehab center. Patients could play a vital role in ensuring safe handoffs via the medical résumé. My mother experienced many handoffs, and I was able to avert many errors through the medical résumé. After my mother was handed off, I would always review my mother’s pertinent medical history and provide a copy of her medical résumé. I lost track of how many times I heard this statement, “This is a life-saving tool. I wish all patients had a medical résumé!” Healthcare organizations have volumes of information on each patient. The medical résumé helps them quickly see all the most important details.

Develop your medical résumé in the form of an electronic file. This can be accomplished easily via a word processing system. The information can be simply updated at any time. Always keep in mind the golden rule of electronic files, have a backup copy!

Below are some suggested items to include in your medical résumé. A medical résumé looks exactly like an employment résumé! I developed the look of my medical résumé based on the appearance of my business résumé. Have major headings with bullet points; just like this article! You want to make it very easy for professionals to quickly and accurately review your information. It may seem like a challenge to include all this information on just two pages. However, you’ll be very surprised as to how much information you can pack into two pages!

Contact Information

At the top of your medical résumé, include the following information:

  • Full name, address, city/state/zip, landline/cell phone numbers and email address
  • Personal data including date of birth, social security number and any patient identification numbers from your medical centers

Insurance Information

Include company names, phone numbers and account numbers.

Allergies

Since allergies could be life threatening, it is important that they be listed early on in your medical résumé. I am allergic to sulfa drugs and scan dyes. I used to just mention these two items; however I found healthcare professionals wanted details. They would often ask what kind of reaction I had – a slight rash or a serious reaction that resulted in a hospitalization? I now include brief but significant details about my reactions and you should too.

Medications 

List all the medications you are taking. Do not assume that all healthcare professionals are familiar with your medications and their uses. In addition to pills, also include inhalers, injectable therapies, drops, and ointments. For each medication, include the following:

  • Medication name (be specific, don’t simply say “high blood pressure pill”)
  • Purpose of medication (for example, “used to treat Type II Diabetes”)
  • Dosage
  • Frequency (e.g., number of times taken per day)
  • Pharmacy contact information

Illnesses and Surgeries

This is a place to list significant illnesses and surgeries. You do not need to include every cold you had in your life! For each major illness or surgery, include the following:

  • Type of issue (e.g., knee replacement surgery, prostate cancer)
  • Date of issue (include month and year)
  • Treatments (e.g., surgery, radiation, specific chemo drugs, etc.)
  • Current status (mention if you are in active treatment or when treatment was completed)

Physicians

For each of your current physicians, list the following:

  • Full name (do not just say “Dr. Smith”)
  • Area of medicine (e.g., internist, oncologist, etc.)
  • Location / hospital affiliation
  • Phone number

Emergency Contacts

Include the person’s name, relationship and mobile phone number.

In addition to the personal medical résumé consider developing a family medical history document. Our family developed this type of document, which proved very useful when seeing a new healthcare professional. Also, if appropriate, have an electronic copy of Power of Attorney documents. My brother and & I were my mother’s Power of Attorney. We had an electronic file of this document and could easily print when it was requested.

Medical résumés get the job done!

How to Prepare for a Second Opinion Doctor Appointment

Expert physicians and cancer patients agree that getting a second opinion is crucial, even if you are very pleased with your primary medical team. It is your health and your life; take care of yourself!

A second opinion will help you learn more about your illness and treatment options. What you learn also will help you communicate intelligently with your medical team to get the best, most personalized care.

But doctor appointments can be scary, overwhelming and intimidating. There is the possibility of bad news and the apprehension of receiving confusing an difficult-to-understand information. Here are some tips to help you make the most of your second opinion appointment.

Prepare in advance

Plan to take a trusted friend or family member with you

This is critical. Memory retention is only 10% and less when you are stressed. You will not remember everything that is said during the appointment. You need to have someone there with you to be ‘another set of eyes and ears’. Then you can discuss key points with this other person to make sure you both heard the same information, go over options, and, if appropriate, ask for their input and opinion,

Record the conversation

Ask the doctor if you can record the conversation. Pull out your smartphone and record it! Then you can play it back at your leisure and discuss it with your family and the person who accompanied you to the appointment. You can then go over key issues, play back critical discussions and not miss anything!

By the way, many expert physicians have endorsed the idea of recording the discussion at a doctor appointment so don’t be afraid to ask!

Think of questions to ask and write them down ahead of time

No one thinks and speaks at the same time and does it effectively. And stress adds to the mix. So plan ahead and write your questions down to prepare yourself for the appointment. For example:

  • Confirmation of diagnosis
  • What are the next steps?
  • Am I eligible for a clinical trial?
  • What are my treatment options and does the second opinion doctor agree with the original treatment options?
  • What are the side effects of the treatment options?

If a clinical trial is advisable, you can ask these questions:

  • What is the purpose of the study?
  • Who is sponsoring the study, and who has reviewed and approved it?
  • What kinds of tests, medicines, surgery, or devices are involved? Are any procedures painful?
  • What are the possible risks, side effects, and benefits of taking part in the study?
  • How might this trial affect my daily life? Will I have to be in the hospital?
  • How long will the trial last?
  • Who will pay for the tests and treatments I receive?
  • Will I be reimbursed for other expenses (for example, travel and child care)?
  • Who will be in charge of my care?
  • What will happen after the trial?

Bottom line: You do not need to become a medical expert in your disease. By following the guidelines above, you can become more knowledgeable to make informed decisions about your path to improved health and quality of life.