Empowered Patient Archives

Qualifying for Disability Benefits with Cancer

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Have you been diagnosed with cancer? If so, you might be eligible for financial aid. If so, the Social Security Administration (SSA) might be able to help. The SSA offers monthly financial resources for people with serious illnesses who are unable to work. While a cancer diagnosis does not automatically qualify, thousands of people with cancer are eligible for assistance.

Medically Qualifying for Disability

The SSA will refer to its own medical guide, known colloquially as the Blue Book, when you apply for disability benefits with cancer. The Blue Book contains details on exactly what medical results you’ll need for cancer to qualify. Cancer has different qualifying criteria depending on your specific diagnosis, so there’s no way to know if you’ll qualify without first consulting the Blue Book. Here are a couple of examples on how to qualify:

Prostate Cancer

Prostate cancer is one of the most commonly diagnosed forms of cancer, but the good news it’s highly treatable. Because of how receptive prostate cancer is to treatment, the criteria for qualification for prostate cancer are challenging to meet.

You will qualify for disability benefits with prostate cancer if your cancer has progressed or returned despite one round of anticancer therapy (usually three months’ hormonal therapy or chemotherapy will qualify), OR

Your cancer has spread to an internal organ, OR you have small-cell prostate cancer

Prostate cancer usually has to be Stage IV to qualify, but again, if your cancer has returned despite treatment you may still qualify at a lower stage.

Esophageal Cancer

Esophageal cancer is typically aggressive and challenging to treat, so you’ll actually qualify for Social Security disability benefits with just a diagnosis. Other forms of cancer that qualify with only a diagnosis include:

  • Acute Leukemia
  • Gallbladder cancer
  • Brain Cancer (malignant, not benign tumors)
  • Inflammatory Breast Cancer
  • Liver Cancer
  • Pancreatic Cancer
  • Salivary and Sinonasal Cancers
  • Thyroid Cancer

The entire Blue Book is available online, so you can review the cancer listings with your oncologist to determine if you’ll meet a listing. Typically, if you can meet any one of the following criteria you’ll qualify:

  1. Your cancer is inoperable or untreatable
  2. Your cancer is Stage IV
  3. Your cancer returned despite treatment

Starting Your Application

Applying for benefits is a tedious process, but fortunately you can complete the entire application from the comfort of your own home. Apply online at the SSA’s website—you can even save your progress to be completed at a later date.

If you’d prefer, you can also apply in person at your closest Social Security office. There are over 1,300 offices located across the country. You can schedule an appointment to apply in person by calling the SSA toll free at 1-800-772-1213.

Once approved, you can spend your monthly benefits on medical bills and upcoming treatments, childcare, housing for your family during treatment, food or utility bills, or any other daily living expenses.

Additional Resource:

Social Security Administration: https://www.ssa.gov

Social Security Disability Evaluation: https://www.ssa.gov/disability/professionals/bluebook/

Qualifying Criteria: https://www.disability-benefits-help.org/resources/medical-evidence

The Blue Book: https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm

Social Security Disability Application: https://www.ssa.gov/applyfordisability/

Social Security Offices Locator: https://secure.ssa.gov/ICON/main.jsp

Bills Social Security Can Cover: https://www.disability-benefits-help.org/blog/bills-social-security-disability-benefits-cover

This article was provided by Disability Benefits Help (www.disability-benefits-help.org), an independent resource dedicated to helping people across the country receive the disability benefits they need. For more information, feel free to reach out to our team at help@ssd-help.org.

Living With Two Cancers

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My story with cancer started in 2008 when I was diagnosed with Multiple Myeloma. I was fortunate to have a primary care physician who noted abnormalities in routine blood work and sent me to a hematologist oncologist. At the time of diagnosis I was at the MGUS stage, precursor to active Myeloma, and was monitored every 6 weeks. During that time I switched to a Myeloma specialist in the health system where I was employed as a PT. I also hit the internet to learn more about this cancer that I had never heard of. BIG MISTAKE! The published survival rates at the time were 2 years. I wasn’t ready to hear that so I stopped reading.

Over the next year I pretty much refused to own the fact that I had a cancer diagnosis. I wasn’t being treated, might never be treated and felt ok except for fatigue. That all came to a screeching halt one day when I had extreme pain in my left arm and suddenly couldn’t lift my arm. I went to the ER and was diagnosed with a pathological fracture of my left humerus, upper arm. I saw my specialist the next day and began treatment immediately since I now officially had active Myeloma.

I responded well to treatment and went on to have an autologous stem cell transplant (ASCT) 9 months later. This led to a complete response and almost 3 years with no treatment until I relapsed. I began treatment again with the same drugs that had worked so well before and again had a good response. I continued with this for almost 4 more years until one day in October 2016 all hell broke loose. I was in my oncologist’s office for a regular appointment waiting for him to come into the examining room when I crashed. I was rushed across the street to the ER where I was admitted. A few days later, after many tests, I was diagnosed with Acute Lymphoblastic Leukemia, ALL.

I spent the next month in the hospital receiving induction chemotherapy for the ALL and the next 6 months for consolidation therapy. During those months of treatment for the ALL I relapsed again for the Myeloma. After I completed my ALL treatment, that’s now in remission, and recovered from that chemo, I began treatment with one of the monoclonal antibodies for the Myeloma. Now, 8 months later, I feel about the best I have in years and my blood levels are all in the normal range.

Although I’ve gone through a lot, especially since being diagnosed with the ALL, I continue to enjoy and live my life. I worked 6 more years after my diagnosis with Myeloma. I specialized in treating people with cancer as a PT. My cancer diagnosis brought me closer to my patients since they knew that I understood what they were going through. I continued to travel to Europe to teach, attend conferences and for pleasure. After my retirement I  have also been volunteering for the American Cancer Society and been very active as a board member and program chair of my local Myeloma support group.

Encouraging others who have been diagnosed with cancer has been a mission of mine for many years. Now, as a person with two blood cancers, I find that that helps others, but also me. With the treatments that are now available to us, we often can live fairly normal and long lives. Who would have thought that I would still be here when I was diagnosed 10 years ago? I attribute that to the wonderful medical care I have received from my oncologist and his team, the research that has led to more effective treatments and to the support of my friends and family. But, most of all, is my own self education about my cancers and my relationship with my oncologist. I believe that being an active partner in my care has been extremely important. I look forward to continuing to enjoy those things in life that are important to me.

Nancy Stewart
Multiple Myeloma 2008
Acute Lymphoblastic Leukemia 2016

Introducing Claire Snyman: An Empowered Patient

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“Change is the only constant” rings true in my life.

In 2010, I was diagnosed with a rare non-malignant brain tumor after the onset of vertigo and migraines. My son was only four at the time. During my patient journey, I had differing opinions and changes in treatment from the standard of care and realized a few important things. How critical it was to partner with my medical team, how important it was to be active in my health care and be my own advocate and how important it was to keep asking and get a second (or third) opinion if needed.

I started keeping track of all my medical records, educated myself on my condition so I could have informed discussions with my medical team, made a list of questions before each appointment and started to manage my medications and appointments – it was like a full time job!

In 2012, I became acutely ill with vertigo and migraines. I knew something was wrong even after the specialists and the ER doctor sent me home. Because I was active in my health care and educated about my condition, I kept asking questions. It was finally confirmed that my brain tumor had doubled in size. My brain was swollen and I needed brain surgery to survive. I am forever grateful that my husband and I kept on asking questions – it saved my life.

This experience highlighted the importance to me of being your own advocate, putting your health in your own hands and not being a passive participant in your health care. It’s also important to connect, communicate and collaborate with your medical team – in the interests of a better outcome.

After my recovery, I looked for various ways to use my patient journey constructively.

– I co-authored a collaborative study between patients and neurosurgeons at Johns Hopkins University to help increase collaboration between patients and health care teams and get more information in the public domain.

–  I am passionate about inspiring people to put their health in their own hands, having personally seen the impact it can make to a person’s life.  I developed The TEAM Approach for Empowering patients  (Track, Educate, Ask, Manage) – a simple and easy-to-remember tool to help individual’s transition to being an active participant in their health care.

I recently spoke at TEDxStanleyPark 2018 on “Your health is in your hands” and how it might save your life – hoping this message will activate others to become proactive in their health care.

I’m a firm believer than when something in life is no longer an option, when a door closes, another door opens. It may be different to what you expected, but if you are open to looking for it – you will find it. That is definitely true for this chapter in my life!

Negotiating Cancer: Tips From One Who’s Done It

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Editor’s Note: This blog was written by Stefanie Joho, an advocate, speaker, and colon cancer survivor, for The Washington Post. You can see the original blog here.

At the age of 24, after two surgeries and two aggressive rounds of chemotherapy failed to cure me, my oncologist sent me home to die. When I was first diagnosed with colon cancer in 2013, I’d never even heard the word immunotherapy. I didn’t know that my doctors wouldn’t have all the answers. I thought clinical trials were last-ditch efforts rather than treatments that save countless lives. I didn’t know that a treatment geared to fighting my specific type of cancer and the genetic components of my tumor would go on to potentially offer tens of thousands of patients a revolutionary new path to surviving cancer in 2017.

Because I’m one of the very few lucky ones who looked into the abyss and made it out on the other side, I feel it is my duty to speak up and share some of the critical things that I have learned in what is now a new era in cancer care. Because a disease that should have killed me instead launched my career in patient advocacy.

[‘This is not the end’: Experimental therapy that targets genes gives cancer patients hope]

First and foremost, it is important to remember that every cancer is unique. Your journey will be different from mine. Your cancer is yours and yours alone. So think of the following points as “road signs.” They’re ones that I wish someone had shown me when I felt lost, with nowhere else to turn. The goal of this guide is to potentially help shape your thinking as you become an active participant in saving your life. More than anything, I hope it prompts you to question the presumption of cancer care for nearly a century.

1. The more we know, the more we can fight for our lives. 

We look to doctors in their white coats to be the experts — partly because, in a moment of such despair, we want to be able to look to someone to just give us the answers. But you should know that you will not find that person in anyone but yourself.

In the beginning of my cancer journey, I felt intimidated by my doctors and made several decisions that I now regret. I walked into appointments and agreed to everything instantaneously, without even considering a second opinion. As my cancer kept coming back and the treatments kept failing, I decided that the only chance I had to make it out alive would be to become an active participant on my journey. I would have to educate myself. I scoured the Internet. I became an “expert” not only in my specific disease, but also in the current cancer landscape.

I’m in no way encouraging you to become your own doctor and understand all the science. And I’m certainly not encouraging you to take everything you read on the Internet as fact. But in 2017, with the amount of accessibility to information, I’m encouraging you to seek it out. Never take anything at face value or trust blindly. Make informed decisions, not decisions based on fear. Walk into appointments with your doctors as an equal, not as a passive bystander. Being an informed cancer patient today is a full-time job. As with any job, that means learning new skill sets and finding the resources needed to succeed.

2. Asking questions is not making trouble. 

You will often be made to feel that being a “good patient” means not asking questions. But do not be afraid to speak up. Your life quite literally depends on it. Come into every appointment with a prepared list. If possible, bring someone with you who can take notes. If you are confused about something, ask. If you think of it later, write it down. Remember: You’re the one whose needs are paramount. You’re the one who is fighting for your life. Make every thought, concern and feeling heard. If it isn’t received the first time, say it as many times as necessary.

If you begin to develop a symptom from a treatment side effect or from the cancer itself, understand that it is the system’s job to help you get relief. If your doctors aren’t taking you seriously, do not believe their judgment over yours. And if you feel that your physician doesn’t understand or listen to you, then perhaps it’s time to seek one out who will. In my opinion, an individual who does not have empathy is not a physician.

3. No two cancers are the same. Become an expert in YOUR cancer. 

No two cancers are the same. Increasingly, knowledge of such individual variation is being shown to lead to more effective treatments. Ask your physicians and understand every type of genetic testing available to you. The more granular you can get about the specifics of your disease, the more you will maximize your chances of identifying the best possible treatment for your “personal” tumor. (Discovering the genetic biomarker of my cancer saved my life.) Continue to expand your resources so that you can be an expert in your own cancer.

4. Take note of EVERY potential side effect. Report everything. 

The incredible advances in cancer treatments have created a new set of challenges for clinicians, especially in how to identify the side effects. Given that these are new treatments, your doctors are not as practiced with them as they are with chemotherapy and radiation.

For example, immunotherapy is entirely different from traditional treatment. The former utilizes the patient’s own immune system, whereas the latter aims to attack only the cancer cells. Early recognition and proper management of side effects can make the difference between life and death.

Don’t hold back a single concern from your doctor and care team. Even if you think it sounds minuscule or irrelevant, your oncologist needs to know everything to best care for you. Listen to your body. Observe and report any changes.

5. Clinical trials are not a last-resort option.

The lines of treatment are rapidly changing, and, more often than not, getting access to cutting-edge treatments entails enrolling in a clinical trial. There’s an unfortunate misconception that clinical trials are reserved for those who have exhausted all other options. In reality, trials can actually offer access to the most individualized cancer treatment. And in fact, immunotherapy is more and more becoming the first line of treatment — and even being used before surgery to prevent relapses.

And just as individual patients can’t tackle their disease by themselves, we all ultimately must help one another by sharing and participating in clinical trials. Only 4 percent of cancer patients are currently enrolled in studies. Explore trials at cancer centers with a lot of experience in the type of therapy being tested. See if you have options outside of what has been standard of care for 70-plus years.

In the doctor-patient relationship, patients must understand that they are partners of science and as big a part of the cure as doctors. Without us, and our willingness to participate, medical advances would not exist. I will always feel a tremendous sense of pride for participating in a study that will save many thousands of people’s lives.

6. Cancer is not just a physical disease. 

It is critical throughout your journey to address the mental, emotional and spiritual aspects of this disease. Seek help, support and healing from other places, too. There are many schools of thought about why people become ill and what can be done to help them recover. It’s important to maintain your anchor in generally accepted medical principles, but don’t be afraid to look further up- and downstream to see if other currents of healing can add value for you and your care team.

As only one example among many, learning about nutrition made me feel as though I were actively fighting and doing something every single day to help my body heal.

7. Hope is a lifeline.

Don’t let anyone ever take that away from you. I believe in hope. Period. It saves lives. When your mind tells you that it’s over, the body has no reason to keep fighting. If you find yourself drifting in that direction, remember: “You haven’t failed the treatments; the treatments have failed you.”

Of course, doctors must tell their patients the difficult truth. But the specific words used to deliver such news matter. If your doctor is unable to provide you with hope or encouragement to keep fighting, find the hope and strength from within yourself and the loved ones around you.

8. None of this can be done alone. 

This might sound overwhelming. But with great power comes great responsibility. You are powerful, but you are not superhuman. Know your limits, and respect those limits.

Cancer is not a journey that you can navigate alone. The people and professionals with whom you surround yourself will alter the course of your journey. They will lend you strength when you feel you simply have nothing left to give.

If you physically or emotionally cannot actively advocate for yourself, then ask someone to be your advocate. When things were particularly bleak, my younger sister, Jess, often had to speak up for me. She knew what my doubts were, what my concerns were and what was important to me. She became my voice when I didn’t have one.

Create a health-care team that listens to you and cares about you and includes you in every aspect of your decision-making process.

Lastly, and so very importantly: Connect with others in the community. As much as your loved ones will do everything in their power to be there for you, they simply will not be able to understand the complexities of what you are grappling with on a daily basis. Making friends with other cancer patients (even through social media) enabled me to share the fears and anxieties that I was too ashamed or embarrassed to talk about with those who weren’t confronting their own mortality. I could speak openly about my side effects, the changes taking place in my body, my isolation. I could utter the words, “I’m ready to give up,” without the looming guilt associated with saying that to loved ones.

It certainly doesn’t have to be about only cancer, all of the time, but knowing that this kind of support exists is healing. It makes you feel understood.

Empowered Patient Nejat

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Nejat is a 28-year student majoring in public health who attended our digital sherpa™ technology training workshop in Philadelphia, PA. After she shared her inspiring story with us, I asked if I could interview her to share her story of empowerment with you.

Kara: Why did you decide to study public health?

Nejat: I really decided to apply for public health because I wanted to do nursing but felt that I couldn’t get in. I never thought I would end up loving public health so much. It really helped me understand so much of my health. It really taught me how to advocate for myself. I am planning to apply for nursing school soon.

Kara: How and when were you first diagnosed?

Nejat: I was sick in January of 2017, the doctor told me that I shouldn’t have came to the emergency room for stomach pain.  He didn’t give me a CT scan, he tried to prescribe something for pain but I left after being upset. I had emergency surgery in March 2017 after I got sick in the morning and couldn’t stop throwing up. They told me I had a half cyst and half mass. Which measured about 17cm in my stomach The mass had immature germ cells which was considered cancerous.  I started chemo July due to being put on surveillance so when it started regrowing chemo therapy was the second step. I did 12 weeks straight of chemo. B.E.P was the regimen.

Kara: What does being an empowered patient mean to you?

Nejat: It means to go to the doctors office and know exactly what is wrong with you. To understand the options of treatments available. To request a second opinion and feel like you have a choice. To take control of your health and healing.

Kara: How did you know that you needed to advocate for yourself?

Nejat: I never liked not knowing what was wrong with me. I would research and read forums day and night. When doctors tried to plan according to what they felt best I always tried to understand it so I could figure out if it was best for them or me. Most doctors would tell me things off of research. During chemo most of what I experience was different than what they seen in research. I felt like if I never opened my mouth and spoke often. Those 12 weeks would have really been worse. Each new word I went back and googled the definition. Each symptoms I looked up. I dictated what I wanted and I can say it worked great in the end. I am on the road to recovery

Kara: How do you navigate advocating for yourself?

Nejat: I ask for options. I google everything, I look at forums. I join and ask questions.

Kara: Do you think that it is important to find a doctor that you feel comfortable?

Nejat: Yes! I had a doctor tell me she had to do surgery which didn’t align with what my other doctor told me. I told her no and went to a different doctor which gave me options. I felt that she didn’t hear my voice. She didn’t give me options. Yes I’m sick but let me feel I still have a little control of my decisions.

Kara: How has managing your condition affected your daily life as a college student?

Nejat: It starts with your mind set. I have been positive through out my journey. I am determined to not let my hardships be the reason I fail. I have my bad and good days but I try to keep pushing. I am still in school and a few months away from graduation. Though I’m still recovery I’m pushing. I do acupuncture to help my neuropathy and vitamin C to heal rebuild my body.

Kara: What are your tips to help someone become an empowered patient?

Nejat: Start with thinking positive you can make your journey less stressful with thinking positive always look for second opinions if you can. Trust how you feel and never look at cancer as if it’s the end keep fighting.

Wondering how YOU can advance MPN research?

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September is Blood Cancer Awareness Month and we’ve spent the month focusing on ways you can become a more empowered patient. If you missed our recent webinar: What YOU can do to advance MPN Research, the replay is now available. As always, we’d love to hear from you about ways you’ve empowered yourself!

Clinical Trials – Patients ARE Heard in the Process

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Editor’s Note: After a long and resilient battle with primary peritoneal cancer, Roberta Aberle, 53, of Auroro, CO passed away on November 1, 2017 with her husband David Oine at her side. Even as she battled her own cancer, Roberta was a tireless advocate for patient care, hoping to improve the lives of others also fighting life-threatening illnesses. She will be greatly missed by all who knew her.

Bravo to Patient Empowerment Network for providing cancer patients the program series,  Clinical Trial Mythbusters. [NOTE: Segment #3 to be broadcast Sept 6th, 2017 – see program link to register concluding this blog].

Without access to this type of content, how else would patients like me know the value or merits of participating in a clinical trial? Especially a patient like me, who worked in an academic medical facility, recruiting patients for clinical trials for a different medical speciality before my cancer diagnosis. Even I did not have a fundamental understanding of the benefits for me and my diagnosis.

I did have a fundamental understanding of my dire cancer prognosis however. It was as grim as our worst fears. The best option of care presented in that initial oncology consultation was palliative and comfort care measures for my remaining months. I was deemed inoperable due to the extent and metastatic spread of my disease. Even front line chemotherapy was portrayed as uncertain for my rare cancer form, Primary Peritoneal Carcinomatosis (PPC). At least, no evidence-based medicine with a large population of survivors, longevity to discern average duration of progression free disease, let alone, studied in depth enough to provide statistics with any degree of confidence.

The topic of clinical trials was brought up by me, not my oncologist. His response, “Clinical trial enrollment and acceptance can be a lengthy process.” In the subtext, all I heard is that he thought I would be dead before I was enrolled.

However, what my Oncologist didn’t know was that death not an option for me. Not only had I underwent a total hysterectomy due to my history of uterine growths and familial risk factors, including the BRCA1 mutation and extensive extended family cancer; I had already lost one sister to early onset ovarian cancer.  I aso had a second sister who had ceased treatment due to unmanageable side effects from two forms of breast cancer. I knew our family could not withstand another devastating loss to cancer. My parents are elderly and the grief from having lost one daughter with another hanging in the balance if remission would come; adding myself to the mix just seemed another cruelty to hard to deliver.

Fortunately ~ something went right for me early in the process. I was fast-tracked within ten days into a clinical trial, and my treatment started within two weeks. It was a Phase 3 clinical trial of combination therapy including a platinum-based chemo https://www.drugs.com/mtm/carboplatin.html

a second anti-neoplastic chemo

https://www.drugs.com/taxol.html

and a VEG-F inhibitor

https://www.drugs.com/avastin.html

all proven to work effectively together, but with a power boost, a new to market oral agent called a PARP inhibitor.

https://www.drugs.com/drug-class/parp-inhibitors.html

The beauty and greatest appeal of this particular clinical trial, and is a constant in many trials available to cancer patients today; is it fell into a Phase 3 or higher, did NOT include a placebo arm and was comprised of all known, effective agents. The purpose of the study was to identify in what frequency and dosage all worked best, not whether they would have efficacy. I knew what was being tested, which drugs were incorporated and what outcome (dose, frequency parameters defined) was expected. I was impressed at the degree of information captured, analyzed and monitored throughout my clinical trial. Never once feeling at risk of an adverse event or my identity compromised. nor, never once did I feel I did not have the power to suspend my participation if I felt any risks.

Oversight comes from many places, including national and state foundations and organizations with the 100% directive as guided by the principles set forth in the Ethical Principles and Guidelines for the Protection of Human Subjects of Research (often referred to as the Belmont Report) [https://www.hhs.gov/ohrp/]. Reviews of research are performed in accordance with the Department of Health and Human Services (HHS) regulations 45 CFR 46 (also known as the “Common Rule”) and the Food and Drug Administration (FDA) regulations 21 CFR 50 and 21 CFR 56.

https://www.fda.gov/scienceresearch/specialtopics/runningclinicaltrials/ucm155713.htm

I experienced an exceptional response on the clinical trial. My specific cancer marker fell from a pre-treatment high of nearly 3,000 (normal range value = 0 to 35) to 200 within the first six months. While I wish I could conclude this section saying I’ve since been cancer free or in remission. It was a short-lived response. I had disease progression the following year, but I never regret being on that clinical trial. In fact, still today, the PARP inhibitor component I was responsive to in my clinical trial, is still a core of my current treatment plan.

I can say with confidence, I am here as long as I have been by being receptive to clinical trials. That first trial, while ultimately not my cure, bought me time until the PARP inhibitor was approved by the Federal Drug Administration (FDA) for provisional production and release to patients failing 3 or more front-line treatments. As, unfortunately, following the clinical trial, after invasive surgery and debulking, intraperitoneal cancer, I had yet another round of disease progression. I also say with confidence, that first clinical trial was just my first bridge to conventional treatment and surgery.

I’ve played an informed game of leapfrog from clinical trial to conventional treatment to surgery, back to clinical trial and back into conventional treatment. Each clinical trial yielded powerful information about my responsiveness to alternative and combination therapies that proved integral to my next treatment plan.

The result being that I am here today to tell my tale. Six months is now 5 years and 6 months down the path of my cancer experience. A clinical trial was not – has not yet – provided my cure. But having these bridges to new options that were not available to me six months earlier, is not a back track record in my mind.

It still astounds me however, of the estimated 20 – 40% cancer patients who meet criteria for clinical trials, only 3-4% enroll.

https://www.standuptocancer.org/innovations_in_science/view/the_ins_and_outs_of_clinical_trials

I am far from considered an expert on clinical trials, have passed certification and credentialing for enrolling patients and performed data collection in my past role, but my most powerful opinion is based upon personal experience. Being afraid of being used as a guinea pig is an era far receded into the past. Today’s clinical trials are more innovative and more effective than ever. If a clinical trial buys you even 1 week or 1 month of quality time, I say it’s worth it. Even if I were a guinea pig in the process, my vote is that it would have been worthwhile. I would just have chosen to be the squeakiest among the bunch!

See us live on this topic!!

https://www.patientpower.info/event/myth-busters3

Introducing Darla Brown: An Empowered Patient

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“People with cancer who actively participate in their fight for recovery along with their physicians and healthcare professionals will improve the quality of their lives and may enhance the possibility of their recovery. Combining the will of the patient with the skill of the physician – A powerful combination.” ~ Harold Benjamin, PhD, 1982

In 2010 I became very sick. I was losing weight, had excruciating pain in my pelvis, and had extremely heavy, abnormal menstrual bleeding. I went to a doctor to get help. Unfortunately, that was just the beginning of my healthcare saga. I went through several late nights in emergency rooms (often sent away with painkillers), to more ultrasounds than I could count, to countless specialists, and yet the pain and other symptoms only worsened.

The first doctor I visited assumed the culprit was an ovarian cyst and each subsequent doctor I saw took her word for it.  I should admit something at this point in my story. Up until this point, I tended to be passive about my health care. I didn’t question diagnoses or treatments. When so many doctors agreed on my diagnosis, how could I question them? However, when I eventually became “patient active” (a term that I later learned), it actually saved my life.

One sleepless night, I woke up on the floor of my kitchen. The anemia (a result of the abnormal menstrual bleeding) had caused me to pass out while getting a glass of water and I had hit my head.  I went back to the doctor the next day and insisted more tests be done.  I implored, “Please don’t send me home again without a real diagnosis.” I demanded something be done. This was my first step to becoming an empowered patient.

Empowered patients realize that they have to make the healthcare system work for them. Through my experience I realized:

  • It is too easy to get passed around from doctor to doctor in our healthcare system. This wastes valuable time.
  • It is easy for doctors, who can be overburdened, to focus on the most squeaky wheel and forget about passive patients.
  • Had I been empowered sooner in my healthcare journey, I would have gotten to a diagnosis sooner and my cancer would not have become life threatening. My cervical cancer symptoms were actually evident from the start and yet I went undiagnosed for several months.

I was finally diagnosed with stage 2 cervical cancer and found a wonderful healthcare team at Cedars-Sinai Cancer Center. I didn’t have insurance at the time (I was too sick to work and this was before the ACA/Obamacare) but I did qualify for a California state run program called the Breast and Cervical Cancer Treatment Program (BCCTP).

By the time I actually got into treatment, the tumor had grown and had positioned itself inside my cervix so that surgery to remove it was no longer an option. Instead, I went through two months of daily external radiation, weekly internal radiation (also known as brachytherapy), and weekly chemotherapy treatments. I am so grateful that it was treatable, and I am thankful for the healthcare system that made it so. However, had I been properly diagnosed and treated earlier on, I would have required less invasive and less expensive treatments.

Since my diagnosis and recovery, I have spoken to many patients about their experiences and I am honored to be invited to share those stories and lessons in future blog posts.

17 Tips For Patient Engagement

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To kick off 2017 and new year of patient engagement and empowerment, we are showcasing 17 tips from patients, caregivers, and leaders throughout the industry. A special thanks to our partner, The Conference Forum and their Patients as Partners US program, for helping to obtain a few of these excellent testimonials. Their tips and advice are as follows.

 

1. Jack Aiello

“Patients and their care partners need to get educated about their disease and become their own best patient advocates.  The internet can be a great resource where disease specialists create videos on topics from disease overview to treatments and side effects.  And by getting 2nd and 3rd opinions from disease specialists, you put yourself in the best possible position to make good decisions with your doctor.”

2. Randy Broad

“One very important aspect of treatment, especially at the time of diagnosis, is to understand what treatment options your oncology team is recommending and why.  Many providers have ‘pathways’ which determine how a specific cancer (and stage) be treated.  Be sure to fully understand what’s behind and underneath this directive.  Many times it can be determined based upon cost, not best options currently available.”

3. Matthew Zachary

“Patients have the right to survive with dignity and quality and we deserve to be treated age-appropriately. More so, they also have the right to be made aware of the relevant support resources they are entitled to so they can get busy living. This is what it means to face cancer.”

4. Cindy Chmielewski

“Knowledge is power. Educated patients are empowered. Educate yourself. Join a support community either in-person or online; follow the #mmsm hashtag on Twitter; subscribe to disease appropriate YouTube channels, listen to webcasts/podcasts presented by patient advocacy organizations and engage in meaningful discussions with your healthcare team.

Be a partner in your care. “

5. Jennifer Ahlstrom

“Don’t be afraid to speak up. Patients who ask their doctor questions, ask for explanations and treatment rationales get better outcomes. Myeloma is a very complicated disease and there are now an incredible number of treatment options available for patients. If you don’t feel comfortable asking your doctor questions, it’s time to find another doctor, preferably a myeloma specialist who treats hundreds of myeloma patients.”

6. Marie Ennis-O’Connor

“Becoming an empowered patient means taking personal responsibility for your health. You engage with health care providers and systems in ways that are proactive, rather than reactive. You take positive steps in the direction of the care that is right for you.”

7. Scott Riccio

“Remember that YOU get to define value for your own care.  Nobody can read your mind, though, so you have to share what you value, how it impacts you, and what tradeoffs you are willing to make to get the outcomes YOU want.”

8. Andrew Schorr

“Ask your doctor questions! How can we be sure my diagnosis is 100% accurate? How much experience do you have treating this illness? Are there other tests that can help me get the most on-target treatment for my case? What are all the approved medicines for my situation? Why would you recommend one over another? What clinical trials could be right for me, whether or not you have them at this clinic/hospital?”

9. Esther Schorr

“As a care partner, it really is a time to be hopeful as the advances in cancer treatment are moving very, very fast. As it is for the patient you love, it is key to stay educated about advances in treatment options that might be right, and be actively involved in discussions about genetic testing and clinical trials.  It’s also critical to lean on your personal community…friends, family, counselors…in order to “keep it in the road” and retain realistic optimism. As more and more survivors and care partners reach out to each other and share stories, we all gain insights and perspective – and you will hopefully feel supported along the cancer journey. We are all in it together, and we are here for each other.”

10. Amy Ohm

“Caregivers need self-care to effectively care for a loved one – always make sure to put on your oxygen mask first! It can be incredibly challenging to focus on ones health with the daily demands of care-giving. Make 2017 the year you assess your own health and strive to reduce daily stress. Connecting privately with those who relate and to share experience to learn from others can help. We want you to be health in the New Year!”

11. David Wallace

“It is imperative that you gain a solid understanding of your disease so you can become your own advocate.  Connecting with other knowledgeable patients via social media or online forums to learn what has worked or failed to work for them is a good start.  Understand the treatment options that are available to you.  See an MPN specialist who will work with your local hematologist.  If you are not being treated with care and respect, don’t hesitate to seek a 2nd opinion and change doctors until you receive the level of care you deserve.”

12. Carol Preston

“NEVER hesitate to ask questions.  In fact, write down your questions in advance, take them with you to your appointment and go through them one by one.  Be sure to write down the answers (or get your care partner to take notes) as a short pencil is far better than a long memory.  Better yet, record the QA on your smart phone so that you can listen later to the answers as you’ll retain only about 10% of what the doc tells you during your appointment.”

 13. T.J. Sharpe

“Patients and caregivers can be better engaged in 2017 by reaching out to their patient community and actively becoming involved in the support of fellow patients through person to person and group interaction.  Patients and their caregivers can raise the bar for everyone involved in healthcare so that the expectations of patients as a partner in their care is not just accepted, but standard and demanded by patients.”

14. Marilyn Metcalf

“Set our goals together in the New Year, and then work together on our plans and make them happen.”

15. Durhane Wong-Rieger

“Patients are basically a heterogeneous lot, coming with all types of experiences and talents, as well as desires and needs.  Some patients want to have a voice in high-level  policy and system decision-making; some want to extend a personal hand of support.  The more diverse the channels and opportunities for involvement, the more patients can take active and meaningful roles. Every person naturally wants to feel respected and empowered so it doesn’t take much to engage patients: provide a portal, support, information, acknowledgement and most important action.”

16. Deb Maskens

“Patients and caregivers get information from a wide variety of sources, from personal anecdote to television advertising to medical journals. Empowerment and engagement for patients and caregivers in 2017 needs to start by providing them with more information that is trusted, balanced, and objective. Information is power. Let’s give patients and caregivers the information they need as the first step for them to be empowered and engaged in treatment decisions that are right for them as individuals.”

17. Jeff Folloder

“Resource management.  I’m not talking about managing the funds to pay for treatment or care.  I’m talking about managing you.  I got great advice from a lady in a waiting room at MD Anderson.  She told me that every day we wake up with a bucket of energy that we can spend on anything we want and it’s gone at the end of the day.  We can spend that energy on quality things and be tired and fulfilled.  Or we can spend it on silly things like worry and regret and go to sleep tired and empty.  She’s right.  And I remember her words every day.”

How to Prepare for a Second Opinion Doctor Appointment

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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.

 

 

Can(cer) Do! – Why We Should Talk About Cancer

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I saw two productions about cancer in a 48-hour period this weekend…and went home smiling.

The first, produced at Washington, DC’s Theatre J, was called The Prostate Dialogues. It was written and acted by a very fine local raconteur, Jon Spellman. In 75 minutes – with no break – John unfurled his prostate cancer story from diagnosis to his treatment decision (surgical extraction at Johns Hopkins). Along the way, Jon peppered his experience with humor and a graphic depiction, through a normal and happy cell called “Glen,” of the development of those nasty mutated cancer cells. A five-minute description of a 20-year process. Brilliant!

Two days later, my husband and I saw a newly released movie in the U.S., “The Fault in Our Stars,” based on the best-selling, young adult book by John Green. The movie had received excellent reviews, so despite the subject matter, we went to see it. It’s about two teenagers, each with terminal cancer, who fall in love. Hazel and Augustus are doomed. We know it from the start of the movie. And yet, the film was done with grace and understatement and humor. There was no hyperbole. The acting was honest including the antics of Augustus’ now-blind-from-cancer buddy Isaac. Was it heart-breaking? Yes. Was it sometimes funny and often uplifting? Also yes.

As a nearly eight-year survivor, I expected to shed many tears at this movie. It was my non-cancer husband who welled up and forced himself not to cry in public.

Here’s the takeaway: In the U.S., we are talking about cancer! We are talking and laughing about it a lot and in the open, often with people who don’t have cancer. Cancer no longer is quietly discussed in the back room, in hush-hush tones with family and our doctors. Cancer has seeped, no, it is flowing into the mainstream consciousness. The more we learn, the less we fear. The less we fear, the more we live our lives through family, travel and work.

The mantra of my doc at MD Anderson in Houston is to “live large.” In other words, say ‘yes’ to as many opportunities and invitations as possible. If you live in the DC area, go see The Prostate Dialogues. In the U.S., cry and laugh with Hazel and Augustus at “The Fault in Our Stars.” And remember, cancer is not a dirty word. It’s a condition that we face, like Hazel and Augustus, with grace and humor, and now more than ever, in the open.