How Stress Can Play a Role at the Time of a Cancer Diagnosis
How Stress Can Play a Role at the Time of a Cancer Diagnosis from Patient Empowerment Network on Vimeo.
MPN Network Managers Jeff and Summer share how they’ve overcome and continue to overcome the stresses that follow a cancer diagnosis.
Although, surprised at the time of her diagnosis Summer remained positive. As a care partner at the time of diagnosis, Jeff was fearful because he knew very little about myelofibrosis. To counteract this stress, he armored hisself with knowledge from various resources. Both Jeff and Summer use their hobbies as an outlet whether it’s nature photography or teaching improv classes to further relieve stress.
Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.
What You Need to Know Before Choosing a Cancer Treatment
What You Need to Know Before Choosing a Cancer Treatment from Patient Empowerment Network on Vimeo.
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What steps could help you and your doctor decide on the best treatment path for your specific cancer? This animated video explains how identification of unique features of a specific cancer through biomarker testing could impact prognosis, treatment decisions and enable patients to get the best, most personalized cancer care.
If you are viewing this from outside of the US, please be aware that availability of personalized care and therapy may differ in each country. Please consult with your local healthcare provider for more information.
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TRANSCRIPT:
Dr. Jones:
Hi! I’m Dr. Jones and I’m an oncologist and researcher. I specialize in the care and treatment of patients with cancer.
Today we’re going to talk about the steps to accessing personalized care and the best therapy for YOUR specific cancer. And that begins with something called biomarker testing.
Before we start, I want to remind you that this video is intended to help educate cancer patients and their loved ones and shouldn’t be a replacement for advice from your doctor.
Let’s start with the basics–just like no two fingerprints are exactly alike, no two patients’ cancers are exactly the same. For instance, let’s meet Louis and another patient of mine, Ben. They both have the same type of cancer and were diagnosed around the same time–but when looked at up close, their cancers look very different. And, therefore, should be treated differently.
We can look more closely at the cancer type using biomarker testing, which checks for specific gene mutations, proteins, chromosomal abnormalities and/or other molecular changes that are unique to an individual’s disease.
Sometimes called molecular testing or genomic testing, biomarker testing can be administered in a number of ways, such as via a blood test or biopsy. The way testing is administered will depend on YOUR specific situation.
The results could help your healthcare team understand how your cancer may behave and to help plan treatment. And, it may indicate whether targeted therapy might be right for you. When deciding whether biomarker testing is necessary, your doctor will also take into consideration the stage of your cancer at diagnosis.
Louis:
Right! My biomarker testing results showed that I had a specific gene mutation and that my cancer may respond well to targeted therapy.
Dr. Jones, Can you explain how targeted therapy is different than chemo?
Dr. Jones:
Great question! Over the past several years, research has advanced quickly in developing targeted therapies, which has led to more effective options and better outcomes for patients.
Chemotherapy is still an important tool for cancer treatment, and it works by affecting a cancer cell’s ability to divide and grow. And, since cancer cells typically grow faster than normal cells, chemotherapy is more likely to kill cancer cells.
Targeted therapy, on the other hand, works by blocking specific mutations and preventing cancer cells from growing and dividing.
These newer therapies are currently being used to treat many blood cancers as well as solid tumor cancers. As you consider treatments, it’s important to have all of the information about your diagnosis, including biomarker testing results, so that you can discuss your treatment options and goals WITH your healthcare team.
Louis:
Exactly–Dr. Jones made me feel that I had a voice in my treatment decision. We discussed things like potential side effects, what the course of treatment looks like and how it may affect my lifestyle.
When meeting with your healthcare team, insist that all of your questions are answered. Remember, this is YOUR life and it’s important that you feel comfortable and included when making care decisions.
Dr. Jones:
And, if you don’t feel your voice is being heard, it may be time to consider a second—or third—opinion from a doctor who specializes in the type of cancer you have.
So how can you use this information to access personalized treatment?
First, remember, no two cancers are the same. What might be right for someone else’s cancer may not work for you.
Next! Be sure to ask if biomarker testing is appropriate for your diagnosis. Then, discuss all test results with your provider before making a treatment decision. And ask whether testing will need to be repeated over time to identify additional biomarkers.
Your treatment choice should be a shared decision with your healthcare team. Discuss what your options and treatment goals are with your doctor.
And, last, but not least, it’s important to inquire about whether a targeted therapy, or a clinical trial, might be appropriate for you. Clinical trials may provide access to promising new treatments.
Louis:
All great points, Dr. Jones! We hope you can put this information to work for you. Visit powerfulpatients.org to learn more tips for advocating for yourself.
Dr. Jones:
Thanks for joining us today.
This program is supported by Blueprint Medicines, and through generous donations from people like you.
Communicating About Cancer: A Brief Guide to Telling People Who Care
Getting a cancer diagnosis can easily be the most terrifying, heart-wrenching experiences one has in their lifetime. Everything from different treatment options (if you’re lucky), to financing, and maintaining quality of life suddenly are in full force front and center. It can be hard to know who to turn to if you’re not directed to a support group (of which there are many), and especially how to tell loved ones and co-workers. The choice is yours, of course, in whom you wish to tell and when – there is no right or wrong answer. (However, I and many others have found that having a caregiver to help manage appointments, billing, etc. can help).
Should you choose to tell others, here are some tips that I have read and/or heard from other cancer patients/survivors as well as some I have found personally helpful:
Kids:
- It depends on the age – using simpler terms with younger kids (8 and under) may be more helpful, while older kids and teens can understand more detail. For example, saying that you’re sick and you’re getting the best care from a team of doctors who really want to help you get better
- According to the American Cancer Society, children need to know the basics, including:
- The name of the cancer
- The specific body part(s) of where it is
- How it’ll be treated
- How their own lives will be affected
- Think of a list of questions ahead of time that you think they may ask and jot down answers, such as how the cancer happened (that it’s not anyone’s fault), if it’s contagious, and/or if it’ll be fatal
- Make sure that they know you are open to talking about it at any time. You can also perform check-ins with each other to monitor feelings
Family and friends:
- Select a group of people, including immediate family and close friends
- Divulge information only you feel comfortable sharing. Maybe it’s the basics, as mentioned above, or more detailed information
- Prepare for different reactions, including sadness, anger, frustration, depression, anxiety, compassion, and support
- Also prepare for people to not feel comfortable and feel as if they’re helpless. A cancer diagnosis is a heavy weight to bear, and not everyone will feel like the have the capacity to help as much as they want to
- As the patient, tell them how you’re looking for support (ex. what are your needs during this time, including physical, emotional, mental). Guiding members of your support system to get your needs met may help them feel more at ease and able to help
Work:
- Telling a supervisor/manager may be one of the hardest tasks for fear of discrimination
- However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
- Actual disability
- A perceived history of disability
- A misperception of current disability
- History of disability
- The ADA also:
- Protects eligible cancer survivors from discrimination in the workplace
- Requires eligible employers to make “reasonable accommodations” to allow employees to function properly on the job
- Ensure that employers must treat all employees equally
- The Family and Medical Leave Act (FMLA) also gives you the right to take time off due to illness without losing your job
- However, an employee must have worked for his or her employer for at least 12 months, including at least 1,250 hours during the most recent 12 months in order to qualify. The law applies to workers at all government agencies and schools nationwide as well as those at private companies with 50 or more employees within a 75-mile radius
- The Federal Rehabilitation Act prohibits employers from discriminating against employees because they have cancer
- However, this act applies only to employees of the federal government, as well as private and public employers who receive public funds
- However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
Sources:
- https://www.cancer.org/treatment/children-and-cancer/when-a-family-member-has-cancer/dealing-with-diagnosis/how-to-tell-children.html
- https://www.cancerandcareers.org/en/at-work/legal-and-financial/cancer-and-the-ada-fmla
- https://www.nccn.org/patients/resources/life_with_cancer/talk_to_children.aspx#:~:text=Tell%20your%20children%20how%20much,when%20they%20normally%20see%20you.
- https://www.cancercare.org/publications/22-talking_to_children_when_a_loved_one_has_cancer
- https://www.cancer.gov/about-cancer/coping/adjusting-to-cancer/talk-to-children
- https://www.cancerandcareers.org/en/looking-for-work/job-search-disclosure/managing-disclosure-when-looking-for-a-job
- https://www.cancerandcareers.org/en/at-work/employers-managers
- https://www.cancerandcareers.org/en/at-work/coworkers
- https://www.cancerandcareers.org/en/looking-for-work/networking
- https://www.cancer.org/treatment/understanding-your-diagnosis/telling-others-about-your-cancer.html
- https://www.cancerhealth.com/article/tell-someone-cancer
- https://www.cancer.net/coping-with-cancer/talking-with-family-and-friends/talking-about-cancer/talking-with-someone-who-has-cancer
- https://www.cancer.net/coping-with-cancer/talking-with-family-and-friends/talking-about-cancer/talking-with-your-spouse-or-partner-about-cancer
- https://www.cancer.net/coping-with-cancer/talking-with-family-and-friends/talking-about-cancer/talking-with-teens-about-cancer
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.
Learning How to Simplify Cancer With Joe Bakhmoutski
This podcast was originally publish on WE Have Cancer by Lee on June 18, 2019 here.
Joe Bakhmoutski – WE Have Cancer
Joe Bakhmoutski was diagnosed with Testicular cancer in 2016.He founded Simplify Cancer to provide support and advice to those touched by cancer. During our conversation we discussed:
- Why he created Simplify Cancer
- How he came to be diagnosed with Testicular cancer
- How people perceive various cancers and how some are deemed “embarrassing”
- What patients can do to prepare for their first oncologist appointment and the free tool he offers on his website to assist with this.
- The book he’s writing to help men dealing with cancer.
Links Mentioned in the Show
Simplify Cancer – http://simplifycancer.com/
Understanding Your Cancer Prognosis from NCI
This video is part of NCI’s Understand Your Cancer Prognosis video series published on YouTube on Feb 14, 2018.
If you’ve been diagnosed with cancer it’s natural to wonder, “What are my chances of recovery? Can I be cured? What is the likely course of my disease?” If your cancer is advanced, you may ask, “How long do I have to live?” These are all questions about your cancer prognosis. Produced by the National Cancer Institute (NCI), “Understanding Your Cancer Prognosis” is the main video in the NCI Prognosis Video Series, which offers the perspectives of three cancer patients and their doctor, Anthony L. Back, M.D. — an oncologist who is also a national expert in doctor-patient communication. View the main video to learn key points about prognosis and how to talk about it, and to gain valuable insight from the personal ways each patient has approached questions about their future. To see the related videos and to find other helpful information about how to understand your cancer prognosis and cancer survival statistics, go to http://www.cancer.gov/prognosis.
Facing a Cancer Diagnosis: Advice From An Expert
Facing a Cancer Diagnosis: Advice From An Expert from Patient Empowerment Network on Vimeo.
Brittany DeGreef, a genetic counselor, provides essential advice for when you are facing a cancer diagnosis emphasizing that leaning on supportive friends and family is key. Download the Office Visit Planner and bring it to your next appointment here.
Brittany Degreef is a Genetic Counselor at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. More about this expert.
See More From the The Pro-Active AML Patient Toolkit
Related Resources
 Find Your Voice Resource Guide |
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 Optimize Your First Visit With Your AML Team |
Transcript:
One piece of advice I give patients who are just diagnosed with cancer – and we do frequently see patients at least once a week who were just diagnosed either that week or the week prior – is feel what you need to feel. Not every patient is going to react or cope with their diagnosis in the same way as someone next to them, even within the same family. That also goes for caregivers and relatives.
So, just because you feel like helping out a relative in a specific way, it might not be the same for your brother or sister or cousin.
So, we always tell patients that there is no wrong or right way to cope with a diagnosis of cancer. The way that you approach it is perfectly fine and there’s no right or wrong way to do that.
So, another piece of advice we always tell patients is don’t be scared to lean on your support network, whether that be family or friends, your healthcare provider, advocacy groups, never be afraid to ask for help.
And for some patients who feel like they have limited resources, usually hospitals where you’re receiving your patient care has many resources available to you, whether that be emotional, financial, spiritual, logistical. Don’t be scared to ask about those resources.
Patient Advocacy: Understanding Your Illness
The news that you, or a loved one, has a serious illness can be a terrible blow. You may be faced with an array of emotions ranging from shock to fear to anxiety. You will likely have many questions and concerns about what the coming days and months will bring, and the impact living with this illness will have on your life and the lives of your family. Although you may be reeling from the news, it’s important that you learn as much as you can about your diagnosis, its symptoms, how it may progress and what treatment options are available. In this article, you will learn which questions you should ask your healthcare team and where to find reliable and trustworthy information to become better informed about your health condition.
1. Obtaining Information From Your Doctors And Healthcare Team
Having answers to your questions can help you understand your illness better and feel more in control about your treatment decisions. How much information you want is up to you. Some patients feel overwhelmed by too much information at this stage. Others say they didn’t receive enough information. While information upon first diagnosis is vitally important, you may be in shock and in a heightened emotional state which makes it difficult to fully comprehend all the information you are given. If possible, bring a trusted friend or family member to appointments with you to take notes. If this is not possible, ask your doctor if you can record the consultation so you can focus on listening, and go back and review what was said later.
Medical care is a conversation and to have influence in that conversation you have to speak up. Never be embarrassed to tell your healthcare team if you don’t understand something they’ve 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.
Some questions to ask your doctor about your diagnosis:
- What are the symptoms of this illness?
- What should you do if you notice new symptoms or if existing symptoms worsen?
- Do you need any further diagnostic tests?
- What are your treatment options?
- What are the side-effects of the recommended treatment?
- What are the benefits vs the risks?
- What happens if you do nothing?
- Are there other treatment options available?
Finally, ask your healthcare team if they can recommend further reading, support groups and other resources to help you learn more about your illness.
2. Finding Reliable Information Online
As you move along the patient journey and better understand your illness, you may want higher levels of information. However, you may find the information healthcare professionals provide has not keep pace with your increased needs. This is the point where many patients turn online to seek more information. While the Internet can be a useful source of health information, it’s important to know how to critically evaluate the information you find online. Always discuss what you find with your healthcare team and ask them to put the information into context for your particular situation.
Here are some questions to help you determine the trustworthiness of online sources of information.
- Who has produced the information?
- Does the organization have commercial interests or another reason they are promoting this information?
- Is the name of the organization and their aims in setting up the website clearly shown?
- Does the site provide contact details if you have any questions?
- Is the information on the website up to date?
- Does it cite the source of the information that is being presented?
- Does the site link with other reputable sites that give similar information?
3. Evaluating Medical News Reports
Whether it’s published in hard copy or online, medical news reports can mislead people into thinking a certain drug or treatment is the next breakthrough in a disease. As patient advocates we must learn to read beyond the headlines to filter out the good, the bad, and the questionable.
The following questions will help you evaluate the reliability of medical news reporting.
- Does the article support its claims with scientific research?
- What is the original source of the article?
- Who paid for and conducted the study?
- How many people did the research study include?
- Did the study include a control group?
- What are the study’s limitations?
- If it’s a clinical trial that is being reported on, what stage is the trial at?
Always try to read an original study (if cited) to critically evaluate the information presented. Understanding research literature is an important skill for patient advocates. For tips on how to read a research paper click on this link.
4. Learning From Peers
From helping us to uncover a diagnosis and finding the right doctors and treatments, to learning about everyday coping tips, turning to our peers can make all the difference in how we live with our illnesses. Much of this peer-to-peer learning takes place through social media discussions on patient blogs and in Facebook groups and Twitter chats. On Facebook you can connect with other patient advocates and join Facebook groups related to your disease or health condition. On Twitter you have a greater mix of patients, physicians, healthcare professionals and medical researchers coming together to discuss healthcare matters. It is becoming increasingly popular for attendees at key medical conferences, such as ASCO, to “live-tweet” sessions. You can follow along on Twitter using the conference hashtag which you should find published on the conference website. Another way to learn on Twitter is to join a Twitter chat related to your health condition. Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project.
Final Thoughts
Understanding your illness is the first step on the path to advocating for yourself and others.
Being an advocate involves asking lots of questions, conducting your own research, and making your preferences known to your healthcare team. By doing this, you will be better informed and in a stronger position to get the treatment that is right for you. If this feels overwhelming to you right now, go at your own pace, and reach out to others who have walked this path before you. There is an army of patients who are standing by, ready to share their healthcare wisdom and practical coping tips with you. Seeking their advice will help lessen the fear and isolation you may be feeling, give you a sense of shared experience and connection, and help you feel more in charge of your healthcare decisions.
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.
15 Tips To Get the Most From Your Doctor’s Visit
Have 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.
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.
