Cholangiocarcinoma

Hopefully, you have been fortunate enough to never have heard the word “cholangiocarcinoma” come from the lips of a doctor or a loved one. Unfortunately, I cannot say the same… 

What in the world is Cholangiocarcinoma?

Cholangiocarcinoma is a rare cancer, which is also known as cancer of the bile duct. The ducts of the liver and duct of the gallbladder come together to form the common bile duct.  The gallbladder is connected to the liver.  Cholangiocarcinoma (bile duct cancer)  is not only rare, it has a terrible prognosis, rapidly progresses, and is often caught in advanced stages.

The American Cancer Society reports that approximately 8,000 people are diagnosed with cholangiocarcinoma each year in the United States. To put that into perspective; breast cancer, which is one of the most common types of cancer is expected to have over 325,000 new cases diagnosed this year in the United States.  Many studies report the median survival rate of cholangiocarcinoma to be about 6 months depending on the location and extension.  So in summary, it’s a pretty awful, horrible, horrible, horrible diagnosis.

The Challenge of Rare Disorders

One challenge with rare disorders, such as cholangiocarcinoma is that there is typically less data on different treatment options and there are few providers who are experienced with treating the disorder. It is so rare that several doctors have not heard of this form of cancer.

A True Story…

Always Ask Your Questions

If there is one thing I recommend, it is to ALWAYS ask your questions!  My previously healthy brother who is also my very best friend was diagnosed on MRI with cholangiocarcinoma at the young age of 41 years old (the average age of diagnosis is 71 y.o.). 

On the day of diagnosis, I entered his hospital room and saw tears streaming down his face, as a medical intern informed him of the diagnosis, telling him that the prognosis was poor and nothing could be done and she anticipated a few months left. I was shocked at the delivery of this news by the intern. I asked for a surgical consult to evaluate if surgery would be an option, and my brother agreed he would like to have a surgeon’s input. The intern again informed us that surgery would not be an option, so there was no point. I continued to insist that we would like to hear that opinion from the surgery team themselves. 

My brother (like most people) had no idea what the difference between an intern, attending physician, or specialist was. (To learn more about these titles, read our blog: PA, NP, MD, DO, Resident, Fellow…How Are These Titles Different? ) Knowing that the doctor was an intern and it was the end of July, I knew that the intern had just started her training at the hospital (typically interns start their internship on July 1st). I found this to be out of her scope of practice, to share such news to a patient without asking for a surgeon’s input, especially after the patient/family’s request. The intern may have not realized so early in her career the negative impact her briskness on the situation may have caused in, this case, my brother’s life. Finally, I asked if she would bring our request for a surgical evaluation to her attending physician. The intern agreed to this, and that day my brother was evaluated by a surgeon, who stated that based on the imaging, he was confident he could remove the entire tumor surgically.  One week later my brother underwent a successful 13-hour surgery.   Fast forward to 3 years later…I just finished having dinner with my brother, sister-in-law, and their 4 children. My brother is healthy and living his life to his fullest with a great quality of life.  That one question made a world of difference!

The Moral of The Story

The moral of the story is NEVER hesitate to ask your questions. Regardless of whether it is an intern, attending, or even an oncology specialist; ask your questions. If what you hear does not seem right, ask again, and get more information and opinions. It may very well be that you will get the same answer from 2 or 3 healthcare providers, but that will just help confirm that you are making the right decision. Healthcare providers each have their own way of practicing and one doctor may have a different medication or surgical technique that the other doesn’t practice.  This is important when looking at any medical issue, but ESPECIALLY important when it comes to cancer. Nonetheless, a RARE CANCER. 

Private Patient Advocate

As private patient advocates, Pathway Patient Advocates can help you navigate and support you through this challenging journey.  Thankfully, more recently, there have been wonderful advances in cholangiocarcinoma and great resources available. I have found the Cholangiocarcinoma Foundation to be an excellent resource for patients.  

Call Pathway Patient Advocates today (248) 247-8552.  We want to help you!   

HOW TO PREPARE FOR MANAGING YOUR HEALTH DURING ANOTHER LOCKDOWN

It is no secret that coronavirus cases are on the rise again. In a time of such uncertainty, how can you be best prepared to ensure your health does not suffer during this time? How can you ensure that you have all the tools you need to manage your needs if the country goes back on lockdown? Preparation and proactivity are key. Here are some things you can do now to be prepared so that you can continue the path to your best health.

Telemedicine

Almost all healthcare providers are utilizing telemedicine during this pandemic. Many organizations have transitioned strictly to virtual visits to protect themselves and their patients. If the country goes on lockdown, telemedicine will likely be the only option for routine care. It is important to speak to your physicians about their telemedicine options. Contact your healthcare providers to find out which platforms they use for telemedicine visits. If you need to download any applications or software, create usernames for portals, or receive education on how to connect with your providers virtually, get it done now.

Prescriptions

Can you imagine running out of medication that you take daily for a chronic condition and not being able to reach your provider for a refill? With the potential for closures and staffing shortages, it is important to have all the prescriptions you need ahead of time. Connect with your providers to ensure that your prescriptions have an adequate number of refills in the event you are unable to reach your providers for any period of time. Don’t wait until the last minute or until it is too late.

Appointments

Be proactive and make your appointments for routine care ahead of time. Do you see your nephrologist monthly? Do you see your cardiologist quarterly? Are you due for your annual physical with your primary care physician soon? If you already know that these appointments are upcoming, get them scheduled now! Do not let your health suffer by waiting and not being able to see or speak with your providers. If your appointments are already made, you can always move them or change them to virtual visits if that becomes necessary.   

Pathway Patient Advocates can help manage all your medical needs and coordinate your care. Call today 248-247-8552!

October is Breast Cancer Awareness Month

The American Cancer Association reports that aside from skin cancer, breast cancer is the most common cancer in American women. In 2020, over 325,000 new cases of breast cancer in the US are expected to be diagnosed in women.   In the U.S.,1 of every 8 women are diagnosed with breast cancer.  Breast cancer does not only affect women. Unfortunately, men can also develop breast cancer. 

Despite breast cancer being so common, and its widespread awareness, the diagnosis hits just as hard when it occurs.  A  cancer diagnosis is an unexpected brick for the patient and their loved ones.  Some have described it as, “suddenly throwing your entire life into unorganized chaos.”

First Steps

Fortunately, because breast cancer is well known, there are a variety of healthcare providers that specialize in breast cancer, as well as various treatment options available. Each case is unique, and different management options are available for each person. It is important to choose a specialist that is experienced with your type of breast cancer. 

Finding the Best Care

Your cancer management checklist should include finding a specialist that you are confident and comfortable with.  This patient-provider relationship might not occur with the first provider you meet and that is okay.  It is a great idea to get a second (or third or 4th opinion) if you feel like you just don’t feel comfortable with your provider or agree with the recommendations.  This is true at the start of your journey and any point during the process.  

How Do You Know That You Have Found The Best Provider For You?

  • You trust your healthcare provider
  • You feel like your healthcare provider has your best intention always
  • You are able to contact your healthcare provider or team anytime with questions or concerns
  • You can discuss a detailed plan together and you comfortable proceeding
  • You can ask all your questions and get them addressed
  • You do not feel as if you are being blown-off or ever feel inadequate or nervous to ask questions
  • Your overall quality of life is a top priority
  • You are provided with supporting resources and tools to assist you

The above are important considerations when searching for a breast cancer specialist.  Several centers have an entire breast cancer team that is available to help.

My Breast Cancer Centers Has A Team Which Includes A Patient Advocate, So Why Would I Benefit From a Private Patient Advocate?

This is an excellent question and one frequently asked.  Breast cancer center teams, including nurse navigators or patient advocates can be an excellent asset to a patient diagnosed with cancer.  However, there are additional benefits that a private patient advocate can offer.

Benefits of a Private Patient Advocate

Non-bias

A private patient advocate is not affiliated with a specific hospital or insurance system, therefore they provide biased assistance with just one focus: You, the patient.  If you are not happy with your care or considering alternative treatment or second opinions, a private patient advocate can research and help navigate the best additional opinions.

Experienced Personalized Care

A private patient advocate who is experienced with cancer patients is aware of what struggles that often occur and can assist you. A private patient advocate offers more personalized focus on you and assisting with resources, appointments, and more. A private patient advocate will keep your care organized and help ensure things don’t fall through the cracks and avoid medical errors.

Insurance and Billing

Insurance and billing issues can often lead to frustration and can be very time consuming, which is the last thing that someone dealing with cancer needs. A Private Patient Advocate takes that frustration and worries away from you. She can obtain insurance approval, follow-up on denials, submit appeals, organizes, and manage bills.

When Is The Best Time To Hire A Private Patient Advocate?

Honestly, anytime during the journey, a private patient advocate can organize and help navigate the path and help remove worry and frustration.  Cancer is difficult enough, let a private patient advocate help you along the way; so that you have more time to relax and carry out the things in life that you enjoy.

Contact Pathway Patient Advocates today. (248) 247-8552

We are here for YOU!

Rare Disorder or Misdiagnosed?How a Private Patient Advocate Can Help

Perhaps you are given a diagnosis that just doesn’t seem right for you. Perhaps your symptoms don’t add up to what your healthcare provider told you. Or…perhaps you were diagnosed with a rare disease and not offered much treatment or management plan.  If this sounds like you or someone you know, then continue reading…

Sadly, this happens all too often.  Why? Well, there are many reasons that can be guilty of the cause. For one, science is an art, and doctors and other healthcare providers use examination and tests to lead to a diagnosis that best fits the puzzle. Sometimes the answer is not exactly black and white. Every human is unique and many times so are their symptoms. “Textbook presentation” is not always the case. 

Secondly, the demands of today’s fast-paced healthcare system leave little time for healthcare providers to spend hours investigating each patient’s unique case to figure out the best outcome.  Unfortunately, office visits are often crunched into 15 minutes or fewer timeframes, patients are squeezed in last-minute, perhaps double-booked, and then to top it off, the COVID-19 global pandemic occurs. Even when healthcare providers want to dedicate the extra time to dig deep into your specific case, the healthcare system logistics makes it nearly impossible.  While some hospitals do have scheduled meetings where challenging cases are discussed among specialists, this does not happen in all hospitals, and especially rare in primary care offices. While patients may be referred when necessary to the appropriate specialists in the area of need, this does not always happen.

The complexity of medicine is another reason that misdiagnosis occurs or rare disorders go inadequately managed. There are constant ongoing advances in technology and research and new diagnosis being discovered.  It is impossible for every healthcare provider to keep up with each and every advancement.

How it affects you, the patient

Despite the many reasons why people get misdiagnosed or undermanaged, the end results are essentially the same.  The patient is often left with feelings of defeat, exasperation, exhaustion, abandonment, anhedonia, and depression.  Any one of these alone is a horrible feeling.

So what do you do?? This is where a private patient advocate can help.

What is a Private Patient Advocate?

A private patient advocate is an experienced healthcare professional that provides unbiased assistance to help navigate your path to better health and achieve your personal goals. A private patient advocate does not work for an insurance company or hospital; therefore their first priority is you.    

How can a Private Patient Advocate help in a situation of misdiagnosis or rare diagnosis?

A private patient advocate can help in several ways.  To highlight just a few:

Finding the right care

At Pathway Patient Advocates you have access to not 1 but 2 patient advocates; therefore your advocates are experienced not only in the medical aspect of healthcare but also the administrative side including insurance and billing.  The experienced patient advocates can help you locate providers and resources that can help address your specific situation best as well in the most cost-efficient way for you.

Experienced

It is important to find a private patient advocate that has experience in advocating for patients who have been misdiagnosed or have a rare disorder.  Advocates with this experience, may have already had clients similar to you and have increased knowledge of the situation.  

Saving time and money

With an atypical diagnosis, time is of the essence. Often the sooner you can find a proper diagnosis and good management plan, the better chance you will have in managing symptoms, treatment, and quality of life.  A private patient advocate can efficiently help you find the resources that you need, as they have the process and tools required to do so. This, in the end, will save you both money and more importantly time. 

Personal Support

With a private patient advocate, you are not going through this challenge alone.  A private patient advocate is here for you to walk side-by-side and assist you through your path. Even if you are fortunate enough to have family or friends by your side, it is comforting to know that you have your very own private patient advocate with you looking out for your best interest.

Call Pathway Patient Advocates today, you won’t be disappointed. We are here for you: (248) 247-8552

PA, NP, MD, DO, Resident, Fellow…how are these titles different?

Years ago a person wearing a white coat in a hospital or medical office was a doctor…plain and simple.  Well…this is no longer the case.  As if the healthcare system isn’t confusing enough, providers with various acronyms all wear white coats. So how do you know who is who, and what exactly do they all do?  

Lets first start with the commonly known title: doctor:

A doctor, also known as a physician, is a person that holds a medical degree after completing medical school. After medical school, most doctors also complete various amount of years of residency, where they continue to train under a seasoned doctor. The number of years of residency varies based on the specialty that they choose. In addition, they may also complete a fellowship.

MD versus DO

In many ways, MD and DO are the same. 

The MD title is given to a doctor who has completed allopathic medical school.  DO is given to a doctor who has completed an osteopathic medical school.  The main difference in the training is while MD focuses on treating specific conditions with medications;  DO training focus on whole-body healing.  In practice, these doctors work together in the same facilities, and both hold the qualifications for practicing medicine.

Resident Physician

A resident is an aspiring doctor (MD or DO) that has completed medical school and currently practicing under supervised training to gain experience in the field. The residency program varies based on the specialty. 

Intern

You may have heard a medical professional being referred to as an intern.  An intern is typically a first-year resident. An intern has successfully completed medical school and now practicing under the supervision of a physician. After the internship, the provider enters residency.

Fellow

A fellowship training program is required for a physician to practice as a specialist. For example, surgical oncology. During fellowship, the “Fellow Physician” closely trains under the specialty physician.  The length of fellowship varies based on specialty. 

Physician Assistant (PA)

A Physician Assistant, sometimes also called a Physician Extender or Advanced Practice Provider. A Physician Assistant is a medical professional who has successfully graduated from a Physician Assistant Studies Program and completed board certification.  Physician Assistants hold at a minimum a masters of science degree and some also have a Doctorate or Ph.D. degree. A Physician Assistant can diagnose illnesses, develop and manage treatment plans, and prescribe medications.  They can also perform procedures and work in specialty practice areas such as surgery, emergency medicine, pediatrics, critical care medicine, and psychiatry. Physician Assistants can be a person’s primary healthcare provider.

Nurse Practitioner (NP)

A Nurse Practitioner, also known as an Advanced Practice Nurses, or APN.  A nurse practitioner is a registered nurse who has gained additional training in a specialty area.  Nurse Practitioners hold a master’s degree in nursing and board certification in their specific specialty.  Nurse practitioners can diagnose, treat, and prescribe medications.  They can be a person’s primary healthcare provider. Nurse practitioners can also hold a Doctorate of Nursing degrees. 

A Common Mission

Whether you see a healthcare provider whose badge reads MD, DO, PA, NP, fellow, intern, or resident…they all share one common goal.  The goal of these professions is to provide patients with the best possible care and quality of life.  

Childhood Cancer

September is Childhood Cancer Awareness Month.  Being a parent can be a wonderful experience yet exhausting and challenging.  If your child becomes ill with cancer, the challenge becomes overwhelming.  Things can change overnight, and as a parent or caregiver of that child, you may often feel lost and defeated.  While you want to focus all your attention to this unexpected news, life around you still continues. Other children and family members still need to be cared for, bills still come and you still need to eat, sleep, and care for yourself so that you can best care for others.   

Stressful and Overwhelming Situation

It’s a stressful situation that is both physically and emotionally exhausting.  As a parent, you want what’s best for your child, especially during a situation like this.  This is where a private patient advocate can help.

How can a Private Patient Advocate help with Childhood Cancer?

At Pathway Patient Advocates, we are Private Patient Advocates; therefore we are not affiliated with any physician, hospital, or insurance company.  We provide unbiased assistance in navigating the health care system.  A patient advocate can help you find the best care and resources for your child, in addition to saving you hours of time; which you can instead spend those hours with your child and loved ones.  A patient advocate can help clarify things that don’t seem to make sense, as well as help review medical records and obtain necessary appointments in a timely fashion.  A patient advocate will keep your records organized and help coordinate your child’s care to prevent medical errors. 

With multiple medical appointments, insurance and billing often becomes chaotic and takes hours of telephone calls discussing coverage approval and unexpected medical charges.  With a Patient Advocate, you can eliminate that time, and have the Patient Advocate take care of it in an organized and timely manner.

A Patient Advocate can provide you with additional resources to help you and your child have the best possible care, quality of life, and experience during this difficult time.

When is it best to hire a Patient Advocate?

Now is the time!  Whether your child was just diagnosed, diagnosed years ago, or has an uncertain diagnosis, we can help.  We also stay with you for as long as you need us. We are someone that is here when you are frustrated and feel like you have no one else to call.  We are always here to listen and to help.

Reach out to us to learn more.  We would love to talk to you and tell you how we can help.  It’s not only our job, it’s our passion.

(248) 247-8552

PathwayPA.com

Is it Okay to Change Oncologists?

The short answer;  ABSOLUTELY!

A cancer diagnosis hits patients and loved ones like a brick. Most often you are unfamiliar with the ins and outs of the diagnosis, especially initially.  Cancer management is time-sensitive and you may feel rushed to make life-altering decisions while trying to cope with the emotional aspects and everything else.  You likely at some point have felt a degree of depression, anxiety, and a feeling of uncertainty. Hopefully, you or your loved one have started-off the path of managing the diagnosis with an oncologist and team that you feel comfortable with and have the utmost trust for. 

However, sometimes further into the process, things change and patients and loved ones often feel “stuck.” Just like in any relationship, people’s demeanor, personality, and trust level can change. As a patient, you should feel comfortable getting a second opinion at ANY point of your care. I have seen several patients not seek a second opinion, because they felt inadequately competent in the field and didn’t want to “overstep”.  Remember this is YOUR life.   You should always feel welcome to ask questions and feel comfortable with the plan and care that you receive. Each person has a different experience.  You may have received a great referral from a friend about an oncologist, but your experience was very different. And that is ok!

In my opinion, a good oncologist (or any healthcare provider), should encourage, or at the very least be okay with a patient getting a second opinion. Of course, medicine is a business, but the first priority should ALWAYS  be the quality of life, health, and success of the patient; not an oncologist’s reputation or monetary gain.  

I once had a very reputable oncologist tell a client and myself that he “ is only willing to be the captain of the ship and nothing else”.  This was in regard to requesting if he would be willing to assist in managing care locally, for my client who was currently part of an out-of-state clinical trail.  Definitely NOT the answer my client was looking for.

As a patient, it is very important that you feel confident in your choice of oncologist.  And if that changes, a second opinion is almost always an available option. You may have a second opinion that is exactly the same as your current treatment. In that case, it may help confirm that your current management plan is appropriate for you.  Or it may be the same treatment, but you feel more comfortable asking questions to a new provider, etc.

Don’t be afraid to obtain that second opinion.  Pathway Patient Advocates is here to help you navigate through it all.  Contact us (248) 247-8552.

Do you have a Medical Bill?

Has your insurance company ever denied any of your claims? Have you received bills stating you’re responsible for the full cost of services rendered? Have you ever been told after receiving care, imaging, or lab work that it is not covered because the services were not necessary?

Most of us have encountered rejected medical claims. Many times, we may not know why or how a claim was rejected, but we pay anyway because we got a bill. The good news is, you do not always have to pay! After finding out why your claim was rejected, you always have a chance to appeal the rejection in hopes that the insurance company overturns their decision. This may result in them paying the claim so that you are not stuck with the bill!

Pathway Patient Advocates assists with medical bill appeals

Insurance companies only know what information they receive from the billing provider. For instance, let’s say you were having chest pain and went into an urgent care center. The urgent care does a workup including a physical exam, labs, chest x-ray, and an EKG. They end up diagnosing you with the common cold. The urgent care submits a claim to your insurance company reflecting which tests were done and what the final diagnosis was. Weeks later, you receive notice from your insurance company that you are responsible for the EKG because it was not medically necessary. Of course, this was necessary due to the chest pain you were experiencing. But to the insurance, why would you need an EKG completed is you just had a common cold? You may simply file an appeal to have the insurance company reverse the denial and pay for the services in full.  

Sounds simple, right? Sometimes it is, while others are a little more difficult. Every insurance company has a different appeal process, and it is important to understand what each company requires. Many of them are confusing and require extensive documentation. Call us today if you need help filing an appeal with your insurance company!

Pathway Patient Advocates (248) 247-8552

What is a Medical Profile Summary and WHY should YOU have one?

Pathway Patient Advocates Medical Profile Summary

2020 has taught us the importance of preparing for the unexpected.
Think of it this way: You wouldn’t leave the house without a driver’s license, so why would you risk encountering an emergency without having a Medical Profile.  Let me explain more:

So what is a Medical Profile Summary?

A medical profile summary is an up-do-date organized summary that includes your pertinent medical history, contacts, and medical wishes. It is typically 1-3 pages long.  Once this is created it can be easily updated as things change.

Why is a Medical Profile Summary important?

It is important because if you are in an emergency situation, the healthcare professionals will quickly have pertinent information that they need to help care for you best. Another place it comes in handy is when going to see a new doctor or another healthcare provider. It is a great idea to give a copy of your Medical Profile Summary to a family member or friend in case of an emergency. 

What do you do with a Medical Profile Summary?

A good place for a Medical Profile Summary is in your purse/or wallet and somewhere easily accessible in your home. As mentioned, it is also a good idea to give a copy to a  family member or friend.

Doesn’t your doctor already have all this information?

Maybe.  In today’s healthcare industry, patients often see various providers at various health care facilities, hospitals, urgent care facilities, outpatient surgery centers, etc.  While technology has improved how many of these communicate and share information about joint patients; there is often information that is missed as well as a very large amount of information in an unorganized arrangement. Also not all healthcare professionals such as EMS (ambulance) have access to this information. A Medical Profile Summary is a concise brief pertinent summary. The goal is to have you as the patient be up to date on your medical profile as well as provide a more efficient way for health care providers to care for you. 

How do you obtain a Medical Profile Summary?

Pathway Patient Advocates can help.  We can create a medical Profile Summary for you as well as provide it in a format that you can easily update as needed.  Contact us to learn more.  (248) 247-8552.

HMO, PPO, ACO, PCMH, FSA, HSA… What do these all mean???

pathway patient advocates
pathway patient advocates

Most of us think that insurance coverage is confusing enough, well throwing in some more abbreviations does not make it any clearer.  These abbreviations have been around for a while, yet many of us really have no idea what they stand for, what they entail, and which ones they currently are a part of. Open enrollment will be here before we know it, so here is a brief breakdown on what these abbreviations actually mean:

HMO

Stands for Health Maintenance Organization.

If you belong to an HMO, then you are limited to receiving care from providers in that specific network.  HMO’s also put an emphasis on primary care, making the primary care provider a form of gate-keeper, requiring referrals. 

PPO

Stands for Preferred Provider Organization. 

If you belong to a PPO plan then you have the option to receive care from providers that are outside of the “preferred network,” but likely will have a higher deductible. Also, referrals are typically not needed.

FSA (flexible spending accounts) and HSA (health savings accounts) are consumer-driven plans that allow you to have more control over how you spend your money on health care.

PCMH

Stands for Patient-Centered Medical Home. 

A practice must meet certain standards to become a patient-centered medical home. This often involves bundled payments, where a fixed amount is paid per month.  One goal of PCMH is to promote more efficient care. 

ACO

Stands for Accountable Care Organization. 

This is an organization that includes, not only a primary care practice but hospital and specialty care as well.  The goal is to improve coordination by working together to provide high-quality care.

So, which plans should you have, or do you have?  Well, it depends on several factors such as your age, current health, living situation, and much more. 

We can help clarify it all. Contact us today.  [email protected]