World Cholangiocarcinoma Awareness Day is February 20th of each year.  This type of cancer is especially dear to my heart, as my brother, and best friend, just recently lost his battle after a 7-year-strong fight

Cholangio… what?

Many people have never heard of this long strange word. Cholangiocarcinoma is a long word that hopefully many of you have never heard. This strange word, “Cholangiocarcinoma,” (also known as bile duct cancer), is cancer that affects the bile duct (so the ducts of your gallbladder). Your gallbladder is connected to your liver, so cholangiocarcinoma is often classified as a type of liver cancer.  Despite being a healthcare provider and working in the hospital for over 20 years at that point, my brother was the first person I experienced going through cholangiocarcinoma. It is such a rare cancer that many doctors and other healthcare professionals are still not familiar with it.

More about Cholangiocarcinoma

This rare cancer is very aggressive, and despite its “rareness”, it is now the second most common liver cancer worldwide. The incidence and mortality of cholangiocarcinoma has increased. Due to the vast possible symptoms and aggressive behavior, many are in advanced stages at diagnosis and the average 5-year survival rate at this point is 2-3%. 

Since my first encounter with cholangiocarcinoma when my brother was diagnosed, I have advocated for many clients with different types of liver cancer. However, my brother’s experience allowed me to view this challenging experience from a family member’s perspective. It truly made me a better advocate, one who could empathize and better understand what my clients were going through. It’s quite an awful experience trying to navigate cancer, and when you have a rare one, even more awful. It is hard to imagine going through it alone without Pathway Patient advocates. 

The Challenging Journey

While it breaks my heart to share that my brother passed January 2025;  thankfully, with prayers and persistence, he got to enjoy 7 more years of living his life to his fullest and enjoying his family and friends.

Looking back at the journey, there were so many adjustments and modifications that we had to make along the way with the care team, treatment, etc.  So many doctors were ready to just give up, “It was the easy way”. There had been so many times we have been told, “There is nothing more that can be done.” Even as early as his initial diagnosis when nothing at all had yet been done. There were so many medical errors and improper information that were experienced. It’s no secret that the healthcare system is flawed, but to actually experience it is always a shock. His diagnosis was delayed by over 1 month and by 2 different large health care systems, despite clear symptoms and diagnostic findings, and our persistent questioning. Then due to a miscommunication, we were told surgery was not an option, even though the surgeon had already reviewed the records and agreed that he would be a candidate for surgery. Just a few weeks ago, his imaging was misread.  The healthcare system involves so many people and so many moving pieces in such a fast-paced environment, that medical errors and miscommunication are bound to occur. What’s important is that we find them, so that they can be addressed before it’s too late. And that’s a key benefit of having Pathway Patient advocates.

Working Together

Cholangiocarcinoma is still not fully understood and there is still so much to learn about this aggressive cancer.  

One thing that is not common knowledge is that, unlike most cancers, this type of cancer can be caused by a parasite known as a “fluke”. This parasite lives in the waters near Asia; near China and Thailand. Consuming seafood that is raw or undercooked can contain this fluke worm, and can cause the worm to grow to adult size in a human bile duct, causing scarring and leading to cholangiocarcinoma. So beware of the seafood you consume. 

Trying to navigate a rare cancer is challenging.  The healthcare system involves so many people and so many moving pieces in such a fast-paced environment, that medical errors and miscommunication are bound to occur. 

One question I am commonly asked is, “Do people get offended by having a private patient advocate?” I think that is such a great question… If you have the right care team, they should not be offended at all, but quite the opposite, much appreciated.

Our goal at Pathway Patient Advocates is not to blame anyone or cause strained relationships with any member of the healthcare team. It is so helpful to stay on top of things in this fast-paced environment, especially with a time-sensitive situation such as an aggressive cancer, It’s to add another layer of assistance to smooth the process and work together with the team. 

Another key benefit is thinking outside the box, and going over all options to consider. There are so many things to consider and it can be overwhelming. Also, with so many people involved, it’s difficult for clients to know who is who and keep track of what’s going on and when. Especially, when you are feeling sick and on medications, and experiencing side effects. With all these considerations, it’s so important to always go back and consider quality of life. Having the time to spend with loved ones without having to deal with the logistics of it all is invaluable. 

Patients want to know that their family and loved ones are not stressed due to their condition, and there is often a sense of “burden on the family”. It is great to offer assistance with this aspect. At Pathway Patient Advocates, we not only support the patient but also their loved ones. For the family and loved ones, it gives them a piece of mind knowing they are not going through this alone and provides the opportunity for them to spend quality time instead of feeling flustered and overwhelmed. 

This journey is challenging, and unfortunately, I cannot change that. But my goal is to help improve it to the best of my ability to make it a bit more manageable for all, supporting the best possible outcome. This makes the job all worth it.  If you know someone diagnosed with cholangiocarcinoma, regardless of what stage they are at, I encourage you to reach out. We will treat them as if it is our family members,  and advocate to the best of our ability.  I am available to help you through your journey, wherever stage you are in it.

Dr. Elena Borrelli

Pathway Patient Advocates

By now you have heard of the concept of patient advocacy, but how do you choose the right one? Perhaps you are struggling with a challenging medical condition and you are looking to get things better managed as soon as possible. So how do you choose the right patient advocate? Let’s discuss some ways to help increase your confidence that you are entrusting the right person to guide you through your journey to better health and quality of life.

Choose Pathway Patient Advocates

A common question is; why should I choose a private patient advocate over one that is provided by a healthcare system or insurance company? There is a main key difference between a patient advocate that works for a large system and a private patient advocate. Patient advocates from large healthcare companies practice more like customer service representatives. They may refer you to the billing department, or other areas in the hospital depending on your needs. Their services may be useful in certain situations, however, those patient advocates typically do not have extensive medical or billing backgrounds. Another important factor to remember is that they are employed by that healthcare organization or insurance company, therefore your (patient/or family members’) interest is not always their first priority.  At Pathway Patient Advocates we offer an unbiased individual, who focuses on YOU! We help navigate your path to the best possible care for you.

Choose a Board-Certified Patient Advocate

When you are selecting a doctor, you want a professional who is board-certified and acknowledges competence in the area of practice. Similarly, it is essential to choose a certified patient advocate.

A Board Certified Patient Advocate is a patient advocate who has achieved and maintains certification by the Patient Advocate Certification Board (PACB).  A Certified Patient Advocate upholds the PACB’s Ethical Standards, Competencies, and Best Practices.  Certification also requires successfully passing the  PACB examination, which evaluates broad areas of competencies within the profession.

Choose an Experienced Patient Advocate

A crucial advantage of private patient advocacy is the personalized care and 1 on 1 trusting relationship that you develop with your private patient advocate  As patient advocacy is increasing in popularity, more patient advocacy companies are popping up. Unfortunately, this may make it more challenging for you to select the right one. Beware of large companies trying to monetize by helping you find the right patient advocate. Many large companies or associations offer competitive pricing to connect you with an advocate. However, several of these patient advocates are just starting out and inexperienced in managing your specific condition. It is essential to find an experienced private patient advocate that you can deal with directly instead of having to go through a large association or corporation.  

It’s okay to Switch Patient Advocates

What happens if you started with a patient advocate, but you are not seeing much improvement in your situation? IT is OKAY to switch. We have several clients that come to us after having an unpleasant experience with a patient advocate. Not all patient advocates are the same, find the one that fits best for you.

Be Confident in Your Choice

Take the time to research and ask questions so that you can feel confident going into your relationship with your private patient advocate. At Pathway Patient Advocates, I am a physician associate and an experienced board-certified private patient advocate ready to listen and discuss your needs. My support staff and I are ready to help advocate for you to the best of our ability. If I feel that I am not the best fit to advocate for you, I will be honest with you about that. 

I look forward to hearing your story and advocating for you. 

Elena Borrelli DMSC, M.S. PAC, BCPA

Caring for a loved one can be a full-time job. This may be a parent, child, sibling, partner or friend.  It can be both emotionally and physically draining.  Especially during the holidays, when everyone tends to have more on their plate, caring for a loved one can become increasingly overwhelming. You may be struggling trying to celebrate the holidays as best as possible with your loved ones, yet accommodations and change of plans may be necessary to accommodate medical issues. The question becomes: how can you best enjoy the holidays with your loved one when he or she is sick?

Spend quality time with your loved one

Work with a private patient advocate. A patient advocate can help lessen the load, especially during this time. For example, organizing medical records, communicating with the healthcare team, and adequately preparing for upcoming appointments. This will provide the opportunity for you to spend quality time with your loved one. 

Streamline medical care

An experienced private patient advocate can help your loved one attain the proper care they need, most efficiently. For example, your private patient advocate can review medical records to determine gaps in care and areas that have not yet been explored. She can communicate with specialized providers and coordinate timely appointments to further help diagnose and manage your loved one’s medical condition. The goal is to help provide your loved one with the best quality care for their condition as quickly as possible. 

Avoid medical errors 

A private patient advocate can both help identify medical errors and monitor the process to help prevent errors from occurring from the start. This is essential, especially around the holidays where factors such as short staff, increased patient load, and burnout can all contribute to increased medical errors. 

Make time to Take care of yourself 

When your loved one is sick, it is so easy to focus on helping them that you overlook caring for yourself. Lack of sleep, stress, and lack of healthy food are all factors that can contribute to decreasing your immune system and increasing the chances of you becoming ill. Nonetheless, your energy level decreases and you feel drained. This not only can impact your physical energy, but also your emotional energy. A private patient advocate can offer you the time you need to stay strong so that you can best support your loved one. 

Let a patient advocate help you care for your loved ones. The holiday time is a great time to start. Take time to spend memories and offer emotional comfort to the people you care most about. This is a great medicine that only you can offer. Turn this often hectic time of year into one filled with relaxation and good memories. 

Caring for a loved one can be a full-time job. This may be a parent, child, sibling, partner or friend.  It can be both emotionally and physically draining.  Especially during the holidays, when everyone tends to have more on their plate, caring for a loved one can become increasingly overwhelming. You may be struggling trying to celebrate the holidays as best as possible with your loved ones, yet accommodations and change of plans may be necessary to accommodate medical issues. The question becomes: how can you best enjoy the holidays with your loved one when he or she is sick?

Spend quality time with your loved one

Work with Pathway Patient Advocates. We can help lessen the load, especially during this time. For example, organizing medical records, communicating with the healthcare team, and adequately preparing for upcoming appointments. This will provide the opportunity for you to spend quality time with your loved one. 

Streamline medical care

Pathway Patient Advocates is an experienced private patient advocate who can help your loved one attain the proper care they need, most efficiently. For example, we can review medical records to determine gaps in care and areas that have not yet been explored. We can communicate with specialized providers and coordinate timely appointments to further help diagnose and manage your loved one’s medical condition. The goal is to help provide your loved one with the best quality care for their condition as quickly as possible. 

Avoid medical errors 

Pathway Patient Advocates can both help identify medical errors and monitor the process to help prevent errors from occurring from the start. This is essential, especially around the holidays where factors such as short staff, increased patient load, and burnout can all contribute to increased medical errors. 

Make time to Take care of yourself 

When your loved one is sick, it is so easy to focus on helping them that you overlook caring for yourself. Lack of sleep, stress, and lack of healthy food are all factors that can contribute to decreasing your immune system and increasing the chances of you becoming ill. Nonetheless, your energy level decreases and you feel drained. This not only can impact your physical energy, but also your emotional energy. We can offer you the time you need to stay strong so that you can best support your loved one. 

Let us help you care for your loved ones. The holiday time is a great time to start. Take time to spend memories and offer emotional comfort to the people you care most about. This is a great medicine that only you can offer. Turn this often hectic time of year into one filled with relaxation and good memories. 

Call today to get started: 947-517-8395

It’s hard to believe that the holiday season has officially begun. People all over the world have started preparing for Christmas. It is a magical time of year, filled with holiday get-togethers, hot cocoa, baking, Hallmark Movies, tree-lightings, shopping, and other festivities. While many will describe it as their “favorite time of year,” if you or a loved one are sick during this time, it doesn’t seem so great at all.    

Not well for Christmas

No one wants to spend Christmas (or any other holiday practiced)  in a hospital or with a diagnosis of a critical disease.  In fact, it can feel as if it is the most depressing time of year.  The problem of how to finish shopping in time for Christmas, does not anywhere near compare to the problem of: how am I going to survive through this holiday season? It may seem that the world is focused on preparing for the holidays, and you may feel left alone to deal with your medical issues. I have personally experienced this feeling, and it feels as if the entire world is continuing on around you. You miss out on enjoying this special time of year with your loved ones because you are too focused on your health.   

Your Current State of Health is Holding You Back

Perhaps you are fortunate to be spending the holidays at home, but your chronic condition or undiagnosed symptoms are leaving you fatigued and without the energy to really enjoy yourself.  You may be trying to participate in the holiday season, but it doesn’t seem too enjoyable. Your health seems to be holding you back.  The extra bustle of the holiday season, sweets, and weather changes can add stress and negatively impact your overall health. 

Get The Help You Need

A private patient advocate can help make this time of year more enjoyable for you. Regardless if you or a loved one are battling cancer, a chronic disease, or an acute illness; we can help you get the care you need to best achieve your goals. We help create and navigate a plan personalized just for you, taking care of the tasks you don’t want to do so that you have more time to spend with the people and things that you care about. In addition, we are experienced in dealing with your condition, so we can get things arranged and completed quickly and accurately while offering resources that you may not be aware of.  Our goal is to help you achieve the best quality of life possible.  We want to give you time and energy so that you can worry more about what Christmas festivities you will participate in, instead of how you are going to manage your health.

Contact Pathway Patient Advocates today, we are ready to help with your health for the holidays. 

~Pathway Patient Advocates 

I often hear this statement from new clients that I start working with.  I have concerns with my doctor but I don’t want to bring them up because “I want to be a good patient”. Working as a healthcare provider myself for 15 years, I was surprised when I first heard this in my first year working as a private patient advocate. Fast forward several years later, the statement has become all too frequently heard.

What exactly is considered a “Good Patient” and why do you need to be one? What are the benefits and disadvantages of being a good patient?

What is a “Good Patient”

There seems to be this stigma or widespread misconception that a “Good Patient”  possesses the following qualities and characteristics:

• Never misses or questions reasons for appointments. Even if they are unsure why they are going to an appointment;
• Fills and prescriptions and takes all medications, even when not being fully aware of the; reason for taking, potential interactions, side-effects, contraindications, or cost;
• Agrees and follows all management and treatment plans despite knowing or understanding if their insurance will cover it or if there is a more cost-effective alternative;
• NEVER asks questions during an appointment;
• NEVER asks a question before an appointment;
• NEVER asks questions after an appointment;
• Doesn’t bother the office staff with questions or concerns;
• Did I mention, NEVER askss questions; and
• Never consider second bringing up seecond opinions, fearful of offending the doctor.

Why be a “Good” Patient Advocate?

So what are the perceived benefits of being a “good patient”? Many believe that being a good patient will lead to better patient care. There is a fear that if you are not a quote, “good patient”, then you will not receive the proper care. For example, many believe if they choose to get a second opinion, that their healthcare provider will be offended or upset and not want to treat them anymore. I have a current client who is undergoing treatment for a rare cancer. Recently his oncologist had called and said he was changing his chemotherapy drug. I asked my client, did the oncologist mention why he changed it or why he thinks this treatment may work better? My client responded, “ I can’t ask him that. He will think that I am questioning his judgment and expertise.”

We then discussed how it is very important to understand why you are getting certain treatment, and it is okay to ask questions.

These are valid concerns from a patient or family member’s perspective. However, the stigma of what a “good patient” is is not appropriate. It is so essential to build and maintain a trusting relationship with your healthcare providers and the rest of your care team. If you feel that your doctor or other healthcare provider is offended if you ask a question or even a second opinion, then perhaps that is not the best person to be part of your care team. 

You, as the patient, are also part of your care team. Therefore you do have the right to ask any questions and be involved. Taking control of your health will assist you with being more invested in your health and feeling more confident in your decisions, care, and management.

Redefining a “Good Patient” 

Let’s change the definition of what a good patient is. A good patient:

• Becomes an active member of the care team;
• Adequately prepares for medical appointments by writing down questions beforehand. This will save time for both you and your provider and make your visits more efficient and beneficial;
• Always arrives to appointments on time;
• Takes notes during appointments;
• Maintains well-organized medical records;
• Maintains a good understanding of their insurance coverage benefits;
• Always asks questions for clarification or when new questions arise
• Expresses worries or concerns with the healthcare team;
• Feels confident communicating with office staff and medical providers; and
• Is comfortable obtaining second opinions

Pathway Patient Advocates can assist you with getting the best out of your healthcare and making each interaction with your care team efficient. When you become active in your healthcare experience, you tend to understand things a whole lot better!

Have you taken the steps needed to get out of this rut and actually get answers? Proper testing? Proper diagnosis? Proper management? Has your quality of life improved? If not, make the change now. 

Working with a private patient advocate can help you finally get answers to your questions and move forward with your health journey.

How can a Private patient advocate help accomplish this?

1. Personalized Plan: Create a personalized step-by-step plan that is easy to follow to help achieve your goals whatever they may be.

2. Carry out the plan. For me this starts with reviewing medical records to familiarize myself with details, look for errors and gaps in care. Having a detailed well informed. Basis to start with will help you and your advocate work most efficiently.  This varies from person to person. For example, your plan may include having additional specialized testing undertaken. Finding a specialized second opinion. Finding cost-effective management pains including mediation coverage and much more. 

3. Advocating for you along the way. Even though a nice plan is set, I always recommend planning for the unexpected. Roadblocks may be met that cause plan modification. You may develop new symptoms during the process of navigating your health. You may unexpectedly end up in the hospital. It’s such a great feeling to know your private patient is there for you along the way whatever unexpected occurs. 

4. Staying on track: In addition to carrying the plan, it is equally as important to stay on track by keeping organized records, adequately communicating with your care team, and reviewing your progress through your journey. Often people forget to review their progress, however, this step is so essential. Reviewing your progress helps. Keep you on track see what is working what was less helpful and clarify the next steps. It also often highlights your accomplishments and how far you have come in your journey. 

Are you ready to finally get out of your health rut? Ready for a positive change? You deserve to be healthier, happier, more informed, have better care, and an improved quality of life. Make today the day you feel different tomorrow! 

In today’s current healthcare, regardless if you live in the United States of America Canada, or abroad, the healthcare system has lots of room for improvement. Oftentimes despite many efforts it may leave you feeling alone it may leave you feeling Alone deflated and defeated. Fortunately, it doesn’t have to feel this way. There are many ways that a private patient advocate can help so that you are not left as another casualty of the healthcare system. 

Starting off strong

Here is a scenario, you or your family have new symptoms, or perhaps find a “lump”. At first, you have a wave of fear. But that fear quickly turns into determination and you take off…You do your research, book your doctor appointment, and write down a list of questions. You are ready to tackle this new finding, whatever it may be…. 

This may or may not be you. And that’s okay, everyone is different and approaches things differently and wants a different level of involvement. 

Not getting anywhere

But sadly what often happens is that you get to your appointment, it is much shorter than you anticipated (other than perhaps the long wait in the waiting room), you get to maybe the first two questions, and you are given a non-detailed answer, perhaps feeling as “brushed-off” and by questions number 3 (if you get that far) you decide to just stop asking.  You feel your symptoms are minimized and your concerns are not validated. So you feel you have to play the role of what you sense you are the “good patient”. 

Now this of course is not always the case, but with today’s fast-paced life, it is quite frequently a reality.

 

Tired

So at this point, you are now emotionally and often physically tired, exhausted, and fatigued. Maybe you have had multiple visits, maybe you have researched, joined forums, and tried various home treatments. Maybe Google has provided you with TOO much information that you know you are not sleeping. Maybe you have no means to pay for more care. Unable to get the referral you need? Not sure What referral you need? Maybe not even sure WHAt a referral is? You’re not a doctor and even if you are, the process is not any easier to navigate. It is putting a mental strain on you and your loved ones. No insurance? Bad insurance? At this point, all that energy and determination you start with has vanished. Perhaps you are becoming depressed. Where do you go from here? What can you do? What energy do you have left to do it?

Private Patient Advocacy

While this is an all too common experienced process, it doesn’t have to be that way! An experienced private patient advocate can travel that journey with you. They can use their energy to get things done more efficiently and effectively so that you don’t have to use your energy. Whether you’re just starting this journey of the unknown or have been in it forever. Whether you are energetic or completely spent, it’s a good time to start working with a private patient advocate. Cancer? Aging? Rare condition? Undiagnosed? A private patient advocate can help. Currently healthy? Let a private patient advocate help keep you that way. 

Does any of this relate to you? If so, give me a call, and let’s chat more at (947) 517-8395

Elena Borrelli DMSC, MSPAC, BCPA

Founder of Pathway Patient Advocates LLC

Rare conditions

Dealing with health issues is a challenge in itself. Having a rare medical condition adds additional levels of obstacles and disarray. In addition, you may feel that your questions and concerns are being ignored or disregarded. It is unfortunate that these challenges are shared by so many individuals dealing with rare conditions. It should be this way, and I am here to tell you it doesn’t have to be that way. Your experience navigating through a rare medical disorder can be improved with the help of a private patient advocate.  

A private patient advocate is distinctly different from a complementary patient advocate offered by your health insurance company or hospital system.  Having an experienced private patient advocate with a medical degree offers you individualized and personalized guidance, having your best interest in mind. If you want to learn more about what makes a private patient advocate unique, read more here. 

There are several factors to consider when living with a rare health issue. Let’s discuss a few below.

Are your symptoms accurately diagnosed?

It is quite common for someone with a rare condition to have additional medical conditions. It is often hard to decipher what symptoms are a result of your rare diagnosis or perhaps another condition. This is one of the many reasons it is so essential to obtain second options and additional testing so that you truly understand what condition or conditions you have.  The first step in treating a problem is diagnosing it. A private patient advocate can help you find the right experts you need and proper testing options.  

Quality of life

Take a minute and consider your quality of life. Everyone’s definition of quality is different. Think about what a good quality of life means to you. What things are most important to you? What activities? What people? Defining what a good quality of life means to you, will help determine what goals to achieve in managing your condition. It may feel discouraging to think about your quality of life because, in the current state, your quality of life may not feel so great. Fortunately, there is a potential to change this for the better.

Treatment options

A private patient advocate can assist you with researching various treatment options to consider, as well as arranging access to treatment options. Remember, your condition may not be so rare to us. As a private patient advocate I have helped many clients with rare disorders, you may be surprised at how familiar we are with your condition. Even if we have not had a prior case with your specific medical condition, our experience with working with similar rare conditions can help us navigate along your journey to managing yours.

We are here for you, even when it feels like no one else is listening. (947) 517-8395.
https://pathwaypa.com/