NETSTalk

November 1, 2023

By Anne Dabbs, 
NCAN TN Support Group Leader, NET Patient

“Your mind is a garden. Your thoughts are the seeds. You can grow flowers, or you can grow weeds” —Osho

Whether you have met other Neuroendocrine patients in support groups, at patient conferences, or via social media, our life is enriched by finding these individuals who “get you” and can understand your challenges. Our friendships are formed by a common ailment and then are strengthened by our support of one another. I am constantly amazed at the even tiniest displays of support that can uplift a hurting heart and encourage the patient forward and upward from their lowest point. It has been uplifting to me these past several years to meet and converse with other patients who have also learned that sometimes solace can be found among your sorrow.

I have learned so much from others who are positive, yet realistic; supportive but not overbearing; grateful despite our disease.

Opinions and determinations that I have learned from our community have taught me to not identify my cancer as cured or healing, instead I focus on livable and manageable. Many of us diagnosed at Stage 4 lived with our disease, innocently, for years and years. I try not to live my live “short” by dwelling on all the real or potential negatives, and instead focus on living each day to the best of my abilities. 

I am encouraged when fellow patients share their realization that they have learned to let go of the things they can’t control and have adjusted their expectations of a perceived future to find the joy in their current situation. Patients share that relationships become more meaningful. Their priorities become clearer. They try hard to no longer sweat the small stuff. They become more empathetic to other’s misfortunes.

I like to think that these individuals have also made peace with their everyday.  Learning to live happily and positively within their reality is fuel for gratitude and thanksgiving.

Some days it seems impossible to stay positive in the face of our many medical and physical and emotional challenges.  Self-care days are necessary and encouraged. It is important to balance those days needed to recharge your body and mind with your functional days to set a manageable routine. This can help keep you motivated and positive.

A positive attitude can be cultivated. I work at it every single day. My melancholy moods have a time and a place in my life, but they have no place when I need to be at my most productive. My fellow Neuroendocrine friends are teaching me to frame my thoughts into a positive outlook as often as I can.

Multiple studies have shown that a positive attitude is a foundation for gratitude. Conversely, gratitude and thankfulness reinforce a positive attitude. Science tells us that gratitude is beneficial for us! 

Those who cultivate gratitude are shown to have improved heart health and improved sleep patterns. Gratitude for simple pleasures can help to reduce depression, lessen anxiety, and relieve stress. Gratitude and thanksgiving also allow us to refocus on what we have instead of what we lack.  With a mindset of gratitude and thankfulness, we begin to see the positivity in our lives.  That positivity translates into happiness, contentment, and confidence.

When the odds seem against us and we become overwhelmed with life in general and our Neuroendocrine Cancer in particular, please try to think of the friends who have reached out to you with encouragement and understanding. Look for the bright spots wherever you can. Hold onto them and then be ready to share when another patient needs your helping hand.

And remember, NCAN is always HERE to lend you a helping hand.

October 1, 2023

By Anne Dabbs, 
NCAN TN Support Group Leader, NET Patient

True Story: 

A young oncologist was baffled by his patient’s repeated carefree and lighthearted moods as they discussed her less than successful treatments and continued progression month after month. Finally, it became clear that the patient had failed to understand the medical definition of progression. His patient erroneously thought she was getting better.

Oxford Dictionary defines progression as the process of moving toward a more advanced stage. In music, that can mean a passage from one chord to the next. In mathematics, it can mean developing skill sets. In oncology, progression does not have the same desirable connotations.

Just as an oncology patient is reeling from the shock of a cancer diagnosis, they quickly learn that a whole new language is suddenly essential. Additionally, Neuroendocrine Cancer patients have a subset of terminology unique to this disease. Oftentimes there are subtle differences in word choices used by medical professionals and those used by patients living with NETs.
Since 2016, I have been honing my own personal understanding of medical lingo and would like to share a few observations here. I have found that sometimes what I thought I heard is not exactly what the physician said. Too often, I failed to ask for clarity. Too often, the physician has failed to recognize the multiple connotations a word can have, especially for a novice in the oncology world.

Communication + Conversation + Clarification = Understanding.

Don’t hesitate to ask for clarification when discussing your disease and potential treatments. Here are a few helpful phrases you can use to clarify a conversation with your physicians:
“I’m not sure I understand.”
“Can you explain this differently for me, please?”
“Let me repeat what I think I understand you are telling me.”

Below are several medical terms that can have multiple definitions. Confirm what your doctor’s definition is.

INOPERABLE:
1) Surgery will not cure your disease, or
2) Surgery is too risky a procedure for patient’s overall health, or
3) Surgery is not currently an option by this surgeon.

Question to ask:
Is this terminal in the short term?
Is this treatable?

INCURABLE:
1) No known 100% successful treatments for this disease, or
2) We can’t make you well again, or
3) We can’t totally remove the disease, permanently.

Questions to ask:
Is this terminal?
Is this treatable?
How can my quality of life be improved?

BENIGN:
1) Non-cancerous matter, mass, chemical makeup, or
2) No suspected cancer cells now but could become cancerous.

CURED:
1) Tumor completely removed with apparent clear margins, or
2) Tumor and metastatic disease removed with no reoccurrence, or
3) Following 10+ years of surveillance with no reoccurrence.

NED:
No evidence of disease, right now.

Question to ask:
Does this mean cured to your doctor?

Two words whose use on medical reports often cause confusion or substitute concern for fear for patients are found quite frequently in NETs vocabulary:

IDIOPATHIC:
The medical definition according to Oxford languages is “relating to or denoting any disease or condition which arises spontaneously or for which the cause is unknown.”
This might be the most frustrating term appearing in a Neuroendocrine diagnostic journey. So many of us have experienced idiopathic symptoms attributed to other conditions to only learn post diagnoses that the symptom is a classic NET syndrome symptom.

PHYSIOLOGICAL:
“Characteristic of/or appropriate to an organism’s healthy or normal functioning”. Merriam-Webster’s medical definition reinforces quite clearly the fact that seeing “physiological” on a scan report [ can likely be] nothing to worry about.

Politely requesting clarification during a conversation with your physicians should not be an angst inducing event. Both the patient and the professional will benefit when the goal of arriving at a clear, accurate understanding of the speaker’s words is met. It is also true that the patient holds the responsibility for their side of the conversation by using concise and accurate terms to describe their symptoms or experiences. But that’s a conversation for us for another day!

To help build your NETs vocabulary, we encourage you to utilize the NCAN Resource Room and Glossary. And as always, we are HERE to help.

September 1, 2023

By Anne Dabbs, 
NCAN TN Support Group Leader, NET Patient

Fall is my all-time favorite season! 

Back in elementary school it was the anticipation of a plaid vinyl book satchel or a brand-new box of 64 crayons with the built in sharpener that had me squealing with delight. Middle school and high school held the excitement of football games and the marching band. College introduced me to a whole new world of “elective studies”. Fall will always be a time of learning, opportunity and excitement.

And Fall 2023 is no different. It is gearing up to be an exciting time for the NCAN family and Neuroendocrine Cancer Community. We are offering numerous opportunities for EDUCATION, PARTICIPATION, CELEBRATION, and COMMUNITY CONNECTION.

PATIENT CONFERENCES
We are finishing strong on a year full of NCAN highly anticipated Patient Conferences with an event in Cleveland, Ohio on September 9th and another in Miami, Florida on October 14th.

Cleveland’s slate of SPEAKERS include presentations by specialists well known to our community plus newer, up and coming NET specialists. Registration is now open and spaces are filling up quickly. Don’t miss this opportunity to listen, learn, and meet other patients who share similar experiences.

Miami’s October 14th Registration is now open, too. Check out the speaker line-up HERE. The educational and informative materials offered at these patient conferences serve as a foundation for your better understanding of our disease and relationship building with other members of the NET Community. Clear your calendars and make plans to join us!

STRIDES FOR STRIPES ZEBRA WALKS 2023
One of the more visually exciting events in NCAN is our annual fall “Stride for Stripes” Zebra Walks. This year we are encouraging patients, advocates, family, and friends to join in the fun via 3 separate opportunities:

Zebra Walk 2023 is anchored by 2 established walks, in 2 diverse locations. September 24th Zebras of all shapes and sizes will join in the fun in East Meadow, NY. On November 4th another herd of zebras will be walking in Charlotte, NC. Both in person events are certain to be fun and memorable!

For those of us who are not geographically able to participate at either of these locations, we are looking forward to the 2023 “Stride for Stripes” VIRTUAL Zebra Walk Across America! From October 1st until December 31st patients, advocates and supporters are encouraged to form their own local walks to raise awareness and additional funds to support the continued awareness and educational efforts of NCAN. Many regional NCAN support groups will organize walks in parks, zoos and other public venues. Many patients will individualize their efforts, and that’s ok too! The whole idea is to get out and show your stripes! And don’t forget those great motivational NCAN t-shirts. Registering to walk is your ticket to looking cool in black and white! REGISTER HERE for all 3 walks.

THE O’DORISIO AWARD FOR NET LEADERSHIP AND
THE 20TH ANNIVERSARY CELEBRATION OF LIFE GALA
Fall is not complete without some celebrations. To offer tribute and gratitude for an invaluable staple in the world of Neuroendocrine Cancer, NCAN is establishing “The O’Doriso Award for Net Leadership”. Dr Thomas O’Doriso first began presenting at NCAN patient conferences in 2003. His commitment to the NET Community was evident to all and his legacy will continue via this patient nominated award to other exceptional NET Physicians. Nomination forms must be submitted by Sept 15, 2023.

The recipient of this inaugural award will be announced on November 11th at the 20th Anniversary Celebration of Life Gala in New York.
The Celebration of Life Gala is a highly anticipated annual event to celebrate all that life has to offer. Patients and advocates will join in some well deserved fun with dinner, dancing, raffles and a silent auction. And to celebrate our 20th anniversary this year promises to be bigger and better than ever! The Funds raised at this event each year benefit Neuroendocrine patients and caregivers through our extensive support and educational programs Reserve your tickets HERE.

Finally, we will also recognize November 10 as World Net Cancer Awareness Day. Individually and collectively with other Neuroendocrine advocacy groups we acknowledge this date to help increase our much needed awareness. Wear your zebra t-shirt, take a Stride for Stripes walk, catch up on your Neuroendocrine reading material, TELL somebody about your disease! Celebrate the fact that research and treatments are rapidly developing. Celebrate that we are family, and we always have HOPE.

If you have any questions about NCAN’s upcoming events, or just need some extra support, please reach out. We are always HERE for you.

August 1, 2023

By Anne Dabbs, 
NCAN TN Support Group Leader, NET Patient

“Should I Stay or Should I Go?”

Who would have thought that this 1982 punk rock song would become my anthem while deciding when to go to the ER or not.

Those of us who live with a chronic illness like Neuroendocrine Cancer must develop critical thinking skills to help determine when a trip to the emergency room is the best decision or if our needs can be met otherwise.

I try to remind myself that an Emergency Room is for, well, emergencies and is is not intended to be used as a convenience to my regularly scheduled life.

Before heading to the ER, I always ask myself:

1. Is the symptom I’m feeling pain or discomfort?
2. Is the pain acute or chronic?
3. Did it start suddenly and is it debilitating?
4. Is my situation a flare up of a previous ailment which became aggravated?
5. Could my situation be equally evaluated or resolved at an Urgent Care Clinic?
6. Can I request a same day virtual visit with my PCP?
7. Does my PCP have an After Hours Clinic they recommend?
8. I honestly ask myself, “Is this truly an emergency?” Or am I setting myself up for many uncomfortable hours waiting in a less than peaceful environment?
9. It is important to ALWAYS TRUST YOURSELF. If you are having symptoms that suggest heart problems, trouble breathing, or stroke, call 911 and get to the ER as quickly as possible!

Once I have decided a trip to the ER is warranted, as a chronic disease patient I am as prepared as possible to get the most from my visit.

When I choose a facility I ask myself these questions:

1. Does my doctor practice there?
2. Do I need an ER equipped as a trauma center? A cardiac center?
3. Is the facility large enough to have the necessary diagnostic equipment?
4. Is it staffed with personnel likely to be familiar with rare diseases?

At the ER triage, I am very honest, accurate, and concise about my overall health prior to my current situation. I try to be as descriptive as possible about my symptoms such as pain intensity, duration, and locations. It is my responsibility to provide the information to help them solve my puzzle. The staff will first rule out out life threatening possibilities before they proceed to finding the source of my immediate discomfort.

One ER doctor recommends a 30 second synopsis of your reason for seeking current, immediate help. Then following with a 2 minute version to give the staff the bigger picture of your overall health status. Sounds impossible, but practicing your 2 minute health summary and being prepared to deliver it to any medical personnel at any time will help.

If possible, I always have an advocate with me at the ER to help remember instructions. I keep an advocacy bag readily available to take with me, which contains copies of current diagnosis, medications, and allergies. It also contains records of surgeries and my most recent scans. Emergency contact information and medical power of attorney paperwork is also included. I find it is helpful to keep a handful of change for vending machines and a sweater in my bag as well!

I like to be prepared for the possibility of being admitted for additional testing or being discharged with referral recommendations to my PCP or a specialist. Both are possible outcomes from a successful ER visit.

Finally, I make sure I understand my discharge instructions. (This is where another set of ears in the room can be helpful.) I keep all appointments and follow treatment recommendations by the ER. I also make sure my physicians are aware of the issue and resolution which prompted my visit to the emergency room.

Contemplating a visit to the Emergency Room is frequently an angst inducing event. Hopefully these tips will minimize frustrations for you and help you to be prepared in advance to make the most out of your visit.

One of our primary goals at NCAN is the education of our Neuroendocrine patients and advocates. By accessing the Resource Room and videos of previous patient conferences, you can increase your knowledge of typical and atypical health concerns unique to our disease. Additionally our hotline is open 356 days a year 9am-9pm so don’t hesitate to CALL.

July 1, 2023

By Guest Blogger, Julie Riecken,
NE NCAN Support Group Leader, NETs Patient

Personally, I would never run a triathlon. I envy those folks who are determined enough to start, let alone complete such a physically and mentally challenging feat. Back in 2014, when I was first diagnosed with a pancreatic neuroendocrine tumor (PNET), my cousin, Kate, completed her first triathlon after years of training and preparation. I remember being envious, yet so proud at the same time! Little did I know I was about to start running my own long-distance race.

Being a NET patient is much like running a triathlon. It’s physically and mentally challenging, and hopefully it’s a very long journey. Unfortunately, there’s no way to train or prepare yourself for the experience.

So, you’ve been diagnosed, and your situation may feel overwhelming. What can you do? Where do you go? Where do you find support? Here are just a few ideas that might help you feel a bit more in control of your situation:

1) Be sure to see a NET specialist at least once in your journey to make sure you are aware of all options. NET specialists see people like us every day, and they know the latest and greatest tools available in the toolbox. Knowing when to use each treatment is essential!

2) Be sure your local oncologist is willing to work with your NET specialist. Depending on where you are located, you may not have a NET specialist in your area. I see my NET team twice a year (it’s a 4.5-hour drive), and my local oncologist each month. If you’re like me and you don’t have a NET specialist nearby, make sure you are also working with a local oncologist for your immediate needs. The local oncologist will probably administer your monthly SSA injection (either Sandostatin or Lanreotide). Your local oncologist may also be the person to co-ordinate your surveillance scans with your NETs specialist.

3) Contact your local oncologist’s office to see if they have any resources available to you. My local oncology practice has yoga classes, meditation classes, mental health counselors, and patient advocates – just to name a few available resources. Patient advocates can help you with financial questions.

4) Be sure to sign up for co-pay assistance programs. Novartis (for Sandostatin LAR) and Ipsen (for Lanreotide) both have excellent co-pay programs. What does that mean? It means that if you have commercial insurance, (Unfortunately not available if you are insured by Medicare or Medicaid) the drug manufacturer will help you by paying your co-pays and/or deductibles. This should apply to your yearly insurance deductibles and co-pays, and really help your bottom line! It’s a lifesaver! (Note – co-pay programs are available for many drugs for a variety of conditions, so if you have a friend with any chronic illness, be sure to tell them this little hint.) Your patient advocate should be able to help you fill out any paperwork that’s needed.

5) Try to do something every day that brings you joy. For me, I like to sing – so I sing in the church choir and other local groups. When I’m not singing, I go for walks, work on my flowers, or try to learn something new on YouTube and then give it a try. Quality of life is important and a positive attitude is beneficial.

6) Contact your local NCAN group leader when you have questions about living with NET. While we’re all different, you are not alone. If you don’t have a local group leader, contact NCAN  directly (you can find lots of information their website ). Or do what I did and offer to be a group leader!

Most importantly – be diligent but enjoy your life. That may not mean running a triathlon but knowing that there are RESOURCES available can make your journey a little easier and less daunting.

And if you find that you need some extra support reach out. We’re HERE to help. You can reach us at  1-866-850-9555, 7 days a week, 365 days a year, from 9 am to 9 pm EST.

June 1, 2023

By Anne Dabbs, 
NCAN TN Support Group Leader, NET Patient

The expense of living with a Neuroendocrine Cancer diagnosis is a frequent topic of conversation in our support groups and facebook forums. The ways we manage these expenses are as diverse as the disease itself. The bewilderment we experience at the time of diagnosis can be surpassed by the overwhelming array of “how do I pay for all of this?” thoughts we all experience.

In 2022, publications from the CDC stated that more than 1.7 million people in the US are diagnosed with cancer annually. The cost of cancer care is expected to rise annually and by 2030 those costs could reach more than $240 billion. That year we also learned about the passage of the federal Inflation Reduction Act of 2022. A lengthy and complex piece of legislation, one major component will affect many of our fellow Neuroendocrine Cancer patients in that the Act aims to lower prescription drug prices. Whether or not you are currently enrolled in Medicare or Medicaid, it is important to understand the current and future benefits .

Tom Wilson, a NCAN chapter leader for Wisconsin and an active advocate for his wife, Lynn and Neuroendocrine Cancer, has graciously shared their experience of the expected changes in their out of pocket costs. We hope you find his summary of the highlights of these actions beneficial.

Drug Cost for NETs Patient Exceed $325,000 Per Year.

Help is on the way.

The Inflation Reduction Act of 2022 (IRA) is a major piece of legislation that will make significant changes to Medicare Part D, the prescription drug benefit for seniors and people with disabilities. The law includes a number of provisions that are designed to lower costs for beneficiaries, including:

• Capping out-of-pocket costs at $2,000 per year. Starting in 2025, Medicare Part D beneficiaries will have a maximum out-of-pocket cost of $2,000 per year for prescription drugs. This means that no beneficiary will have to pay more than $2,000 for their medications, regardless of how much they cost.

• Requiring drug companies to pay rebates if they raise prices faster than inflation. Starting in 2023, drug companies will be required to pay rebates to the government if they raise the price of a drug faster than the rate of inflation. This will help to slow the growth of prescription drug prices.

• Expanding eligibility for the Extra Help subsidy. The Extra Help subsidy is a government program that helps low-income Medicare beneficiaries pay for their prescription drugs. The IRA will expand eligibility for the Extra Help subsidy, making it available to more people.

• Capping monthly insulin copays at $35. Starting in 2023, Medicare Part D beneficiaries will have a maximum monthly copay of $35 for insulin. This will help to make insulin more affordable for people with diabetes.

These are just a few of the provisions in the IRA that will help to lower costs for Medicare Part D beneficiaries. The law is a major step forward in making prescription drugs more affordable for seniors and people with disabilities. In addition to the provisions listed above, the IRA also includes a number of other changes to Medicare Part D, including:

• Requiring Medicare to negotiate drug prices for certain high-cost drugs. Starting in 2026, Medicare will be required to negotiate drug prices for a small number of high-cost drugs. This will help to lower the prices of these drugs for Medicare beneficiaries.

• Providing more information to beneficiaries about their drug coverage. The IRA will require Medicare to provide beneficiaries with more information about their drug coverage, including the cost of their medications and the availability of financial assistance. This will help beneficiaries make informed decisions about their prescription drug coverage.

• Making it easier for beneficiaries to switch plans. The IRA will make it easier for beneficiaries to switch Medicare Part D plans, including during the annual open enrollment period. This will help beneficiaries find a plan that meets their needs and budget.

The IRA is a comprehensive piece of legislation that will make significant changes to Medicare Part D. The law is designed to lower costs for beneficiaries, make prescription drugs more affordable, and improve the quality of care.

The following are some of the benefits that Medicare beneficiaries can expect from the IRA:

• Lower out-of-pocket costs. The cap on out-of-pocket costs at $2,000 per year will help to protect beneficiaries from high prescription drug costs.

• More affordable insulin. The cap on monthly insulin copays at $35 will make insulin more affordable for people with diabetes.

• Expanded eligibility for the Extra Help subsidy. The expanded eligibility for the Extra Help subsidy will make it easier for low-income beneficiaries to afford their prescription drugs. Starting in 2024, people with Medicare who have incomes up to 150% of poverty and resources at or below the limits for partial low-income subsidy benefits will be eligible for full benefits under the Part D Low-Income Subsidy (LIS) Program. The law eliminates the partial LIS benefit currently in place for individuals with incomes between 135% and 150% of poverty.

• More information about drug coverage. The requirement for Medicare to provide beneficiaries with more information about their drug coverage will help beneficiaries make informed decisions about their medications.

• Easier plan switching. The changes to make it easier for beneficiaries to switch plans will help beneficiaries find a plan that meets their needs and budget.

• Starting in 2025, Part D enrollees will have the option of spreading out their out-of-pocket costs over the year rather than face high out-of-pocket costs in any given month. Under the current Part D plan provisions, those taking expensive Tier 5 drugs (as many NETs patients do), immediately fall into ‘catastrophic coverage’ where they are forced to have to pay significant sums in the first few months of a year. Now they will have an option to set up level payments, much like electric or natural gas payments.The IRA is a major step forward in making prescription drugs more affordable for those with Neuroendocrine Cancer and other types of serious cancers. The law will provide beneficiaries with significant financial relief and help them to get the medications they need.

May 1, 2023

By Anne Dabbs, 
NCAN TN Support Group Leader, NET Patient

However your neuroendocrine cancer life began, whether by a long diagnostic journey, or via a seemingly unrelated health concern, you’ve probably experienced at least one of these angst provoking emotions on a reoccurring basis. Once a cancer diagnosis is confirmed, it is possible that all three of these paralyzing emotions can become a routine part of your average day.

A 2017 study by the Anxiety and Depression Association of America reported that three out of four citizens experienced feeling stressed in any given month. Constant stress is a burden on our mental and physical well being. Worry and anxiety are prime culprits for inducing stress. As neuroendocrine cancer patients, we owe it to ourselves to understand the differences of these emotions and how to best manage them.

Journalist Emma Pattee’s article about the differences of these three emotions was published in the New York Times in February 2020. The article shares a universal application of these challenges and offers basic strategies for dealing with them. I have found the suggestions most applicable for those of us with an incurable cancer diagnosis.

WORRY
Worry is a constant, repetitive, obsession which becomes the cognitive component of anxiety. The effects of worry stay in your mind. Worry is actually an important stimulator of our brains. Worry, should cause us to problem solve or to take action to resolve a situation. Once we have solved the problem and taken action to resolve it, that worry should leave our mind. Appropriate worry helps to keep us safe. It is only when an individual gets stuck on a problem that worry stops being an asset and becomes a liability. In order for worry to be helpful, it must lead to change.

2 tips from Emma Pattee to help manage your worries:
1) Give yourself a “Worry Budget”.
If a short allotted amount of time to worry about a particular situation does not offer a solution or action, redirect your thoughts.

2) Write them down.
Seeing your concerns written out instead of churning in your mind can lead to action toward a solution.

STRESS
Stress is provoked by external circumstances. It is the physiological response to that event, and occurs when your emotional resources have been exceeded by an external, environmental change or force. Stress is a natural and appropriate response to a threat. “Fight or flight” is a behavioral response to stress. Stress can be beneficial. As cortisol and adrenaline rush through your body you may receive that burst of energy to catch an item before it falls or to quickly to finish a task within its final hour. This stress is “Acute Stress” and it wears off once the situation is resolved.

Chronic Stress, however, is when your concerns/worries do not leave your body. The external stressors such as health conditions, financial issues, can’t be easily or quickly resolved. Chronic Stress is directly linked to numerous health concerns, and can truly make us sick.

3 Tips To Help Manage Stress:
1) Get Exercise.
This can help recover from the increase of cortisol and adrenaline in your body.

2) Understand what you can and cannot control.
Control the situations you can and learn to accept those you can’t. “Redefine” that which you cannot control so that it becomes acceptable to you.

3) Don’t compare your stress to anyone else’s stress.
No one has the exact same stimulants or resolutions. We all react differently.

ANXIETY
Anxiety occurs when you experience both worry (the cognitive element) and stress (the physiological element) at the same time dealing with any given situation.
Worry + Stress = Anxiety. If stress is considered to be a natural response to a threat, anxiety is the same thing, but there is no threat. Anxiety is an overreaction to stress and worry. Your body begins to over respond to normal everyday life. Anxiety is not a beneficial emotion.

3 Tips To help Manage Anxiety:
1) Limit external stimulants such as caffeine and sugar.
Anxiety is physiological, and these items can impact your emotional responses.

2) Refocus.
A popular and effective tool for managing anxiety is the 54321 Technique. When you sense that your anxiety is about to boil over, count 5 things you can see, 4 things you can touch, 3 things can can hear, 2 things can smell, and 1 thing you can taste. This simple exercise can redirect your over-racing mind and allow you to take a deep breath.

3) Break the anxiety cycle.
Talking about it or thinking about it does not help as your brain churns out of control. Utilize your senses to distract yourself. Trying to think your way out of an anxiety episode will not be helpful. Anxiety occurs in both your mind and your body. Both need redirection.

Worries and Stressors are an everyday occurrence for all of us. Cancer patients can understandably have an over abundance. When you find your worry and stress becoming anxiety building, please utilize these tips to help you juggle your emotions into a manageable state. Correctly and promptly identifying which of these three emotions is causing you angst at any given time will assist you in using these strategies to reduce or even eliminate the distractions. Always seek professional advice from your doctors or mental health therapists if your anxiety includes harmful thoughts. And please remember that NCAN is with you along this journey and are ready to offer help and encouragement whenever you need it. Just give us a CALL. A patient or caregiver is here to help.

April 1, 2023

By Anne Dabbs, 
NCAN TN Support Group Leader, NET Patient

and

By Tom Wilson,
NCAN WI Support Group Leader, NET Advocate

As time marches on, many NETs patients may be prescribed new drugs, supplements, or vitamins from a range of providers from various clinics. Not only are these therapies expensive, but they may need to be taken at specific times, on an empty or full stomach, and taken at special times of the day, from the first thing in the morning (thyroid medication) to late at night (Afinitor).

As Tom Wilson, a NETs advocate and an NCAN Support Group leader writes, “My wife, Lynn takes 35 medications, supplements and vitamins—some only ‘as needed.” That still leaves about 22 that she takes daily. The term for this is polypharmacy.

Tom and Lynn share their new found knowledge and experience with us here:

Polypharmacy:
Polypharmacy refers to the concurrent use of multiple medications by a single patient. This practice is common in the treatment of complex or chronic medical conditions, where patients may be prescribed several drugs to address different symptoms or underlying health problems. However, the use of multiple medications (via multiple providers) can also increase the risk of adverse drug reactions and other negative outcomes, such as increased toxicity, reduced efficacy, and increased healthcare costs. As a result, healthcare providers should carefully consider the potential risks and benefits of polypharmacy, and regularly assess and adjust medication regimes as needed to minimize harm to patients.

Polypharmacy can create a burden for patients and their families. They need to understand the purpose and importance of the many prescriptions, get refills, take medication at the right time of day, and recognize side effects when they occur. When these prescriptions are written by multiple providers, perhaps at multiple facilities, the task of correctly taking the medications can become overwhelming.

What is needed is a specialized pharmacist to holistically review all of the patients medications. This service is called Medication Therapy Management. (MTM)

A MTM Specialized Pharmacist provides patient centered MTM services for the purpose of optimizing medication therapy to improve clinical, economic, and humanistic outcomes. The establishment of a qualifying process for a pharmacist to become a MTM specialist was established as part of the Medicare Modernization Act of 2003. A location resource for qualified MTM pharmacists can be found on the CDC.gov website. Medicare recipients can access this free service paid for by Medicare Part D for patients with at least 3 chronic conditions and taking at least 7 medications. Medicare Advantage Plan patients may find this option in some of the Advantage Plan offerings. Some employer offered supplemental health insurance plans may also offer a version of MTM as part of “advocacy services”, “healthy rewards”, or “speciality care programs”. Names and qualifications for this service can vary outside of the established Medicare Part D plans, but the benefits of such a service warrant the effort to determine if your insurance offers a similar plan.

The MTM Specialized Pharmacist might identify drugs that many no longer be needed. They might identify duplicates; they might identify conflicts of side effects. This process is called Deprescribing— the culling out of unnecessary drugs.

Compromised Continuity of Care:
Seeing multiple providers across specialities and clinics who are all prescribing different drugs can result in the patient’s continuity of care being compromised. For those patients with a chronic disease, the process of having a life style burdened by a medication regimen can lead to a reluctance to continue taking the drugs which are actually keeping their bodies as healthy as possible. These are just two of the reasons it may be helpful to have a MTM Specialized Pharmacist review your medications periodically.

Tom and Lynn share that they recently met with a pharmacist from Mayo’s hematology/oncology department which was paid in full by their Medicare Part D policy. The one hour Zoom call reviewed Lynn’s entire list of 35 medications. The pharmacist answered their numerous questions about timing, dosing, efficacy, and purpose of each drug. The pharmacist also explained the mechanism (how it works) of several of the drugs to give clarity and confidence to both Tom and Lynn. They were provided a written summary of the meeting including links to clinical trials which might be of value to Lynn’s care.

Tom and Lynn’s willingness to share their experience is an example of the continued efforts of our NCAN family to support, educate, and advocate for each other. Build your self-advocacy tools, and visit the NCAN Resource Room, where you’ll find helpful ways to navigate your Neuroendocrine journey. Better yet, join us at an Upcoming Event and come meet the family!

We are HERE for you if you need us.

March 1, 2023

By Anne Dabbs, 
NCAN TN Support Group Leader, NET Patient

First thought, second thought is a basic philosophical approach to thinking. A first thought can be a knee-jerk reaction, akin to “blowing a gasket”. Flying off the handle when presented with an unpleasant situation is a hallmark of Carcinoid Rage. These overly charged responses are not unique to those of us with excessive overproduction of Serotonin, but they can happen to anyone with an overburdened life. A second thought is oftentimes a more helpful response, an assessment of sorts. A second thought occurs when we are able to step back a brief moment to see the bigger picture and respond accordingly to the most important aspect of the situation. We often hear “when life gives you lemons, make lemonade”. In my opinion, first thought thinking without the benefit of second thoughts can leave a sour bitterness instead of a refreshed perspective of your situation.

In hindsight, I realize now that just prior to my NETs diagnosis, I was living a life full of first thought, knee jerk reactions to even the smallest perceived slight I felt. I knew my emotions were out of control, but I was unaware of the storm my hormones were brewing internally until several years later. I am not alone in this predicament. Many other NETs patients also experience hormonal overloads. We owe it to ourselves, our friends and family, and yes, even to our medical providers to learn how to deal with these expressions.

So many in receiving a NETs diagnosis want to FIX IT NOW! Only a small percentage of NETs patients have the opportunity for a curative treatment, so we must learn to live with our disease. We must learn to advocate for ourselves diplomatically as well. The phrases “watch and wait” and “it’s a marathon, not a sprint” do not always have the comforting intent that our physicians hope for. We want action; we want resolution. Not taking immediate action seems counter productive. Sometimes, we begin to mistrust the physician for not taking a more aggressive immediate action. When we have time to consider a “Second Thought” in this scenario, we realize that perhaps the physician is wanting to gather more information, confirm a suspicion, or wait for stabilization before implementing a new treatment plan.

First thoughts often arise out of fear and frustration. Poorly considered and automatic, these first thoughts can be detrimental to our well being. To be able to step back from a situation and have a “light bulb” moment is a step forward toward self advocacy. Learn to take a moment to say “yes, but” or “yes, and”. This is how you can turn a negative emotion into a positive mindset. Your second thought can be an improvement on your first. Instead of drawing a line in the sand as a result, your second thought becomes a detour on a map to be mastered. Second thoughts are what allow us to make lemonade out of those lemons!

After I was diagnosed, I was in a situation in which I was distraught, thinking my insurance company had overridden a doctor’s medication prescription with an unauthorized substitution. Replies to my comment were fast and furious. All sorts of accusations and resolutions were offered. This was a prime example of emotionally charged first thoughts (of fear and frustration). Shortly after, a reply of a second thought nature appeared. The “substitution” was the actual name for the drug I only knew by the pharmaceutical company’s brand name. I had not been wronged by my insurance company after all. The second thought corrected and diffused the situation immediately.

Simple patience often looks like waiting around or twiddling your thumbs. But, it is not the same as inaction. Patience allows you the time to consider a second thought, a better detour, a confirmation of a more developed plan. Practice second thoughts and they will become second nature to your thinking. Practice listening with the intent to understand rather than listening with the intent to reply. Your perception of whether to act immediately (an emergency) vs the consideration of all options will result in a healthier mindfulness of your overall health.

NCAN offers many resources for learning more about Neuroendocrine Cancer which can help you develop your ability to understand and discuss your care with your medical team. Check out the NCAN YouTube Channel, and tune into NETs Get Real podcast and over 10 years of conference videos to help you become your own best advocate.

And remember, we are here for you, if you need us.

February 1, 2023

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

If you spend anytime at all discussing our Neuroendocrine Cancer with other NETs patients, you quickly learn that there is a whole new vocabulary to master as you learn about our disease. Identifying labels such as our primary tumor locations are valuable tools as we discuss our challenges. Our Tumor Grade values also provide necessary context for meaningful and beneficial conversations. These values are especially important to insure that we are not making incorrect assumptions based solely on our own experiences.

Our labels in patient conversations can differ from those terms and phrases used by our medical providers. It is always best to clarify your understanding of new words and abbreviations with your physicians. There are some labels within our Neuroendocrine World that can be interpreted incorrectly without a basic knowledge of Neuroendocrine Tumor behavior. Those misunderstandings can then become be misleading.

Let’s take a look at INDOLENT, N.E.D. and CURED.

INDOLENT is frequently used by our physicians to describe our Grades 1 and 2 Net Cancers. Indolent rarely refers to Grade 3 unless the tumors are well-differentiated and responding well to treatments.

Merriam-Webster-Webster Dictionary tells us that indolent can mean: averse to activity, causing little or no pain, and/or slow to develop. Those of us who have been told we have a slow growing cancer need to be reminded of this definition. Being indolent is a hallmark for a patient who is in a watch and wait mode of surveillance .

N.E.D. = No Evidence of Disease.

Once a Neuroendocrine patient connects with other previously  diagnosed NETs patients, they quickly learn that NED is our buzz word. NED IS GOOD in this world of an incurable disease!  Everybody wants to be NED! However, with time, Neuroendocrine patients learn that the correct interpretation of NED is: “no cancer is currently detectable in the body’. MDAnderson’s website is quick to remind us that “currently detectable” is the key phrase. Don’t get me wrong, NED is still great and wonderful and worth celebrating, but don’t become overconfident or complacent in your surveillance of your disease. It can be a precarious state. Cancer cells might still be lurking at a level that, at present, can’t be detected.

CURED is a phrase less often used by our Neuroendocrine Specialists and highly NETs knowledgeable physicians. Cleveland Clinic tells us that cured means “completely gone and is not coming back”. Merriam-Webster Dictionary defines it as a “complete restoration of health”. Our Neuroendocrine Specialists know that there are a small handful of situations where a surgical intervention might be considered curative, but that for the majority of us, cured is simply not yet in our disease vocabulary.

So what do we, as NETs patients, do with these labels? We use them to our advantage.
When your physician tells you your disease is slow growing and indolent, you take a deep breath, give thanks, and stay current in your treatments and education about your cancer. You work to incorporate this diagnosis into your life without a dark cloud hanging over you.

When you hear that you have been deemed NED following a treatment or a scan, you enjoy a quick celebration and promise yourself, your family, and your friends that you will not become lazy or forgetful about your surveillance. And, you accept that NED might not be forever. NED truly means right now by the best means available to assess your status. Next month, it could be different.

And, when you hear that you are cured of your Neuroendocrine Disease by someone other than a NETs specialist who is familiar with your case, you say “thank you, but no thank you. I need a second opinion”. And, you do just that. You read more, learn more, and make connections with those physicians who truly understand Neuroendocrine Cancer and its unique behavior. Only then, would the word “cured” have merit.

When I try to label my personal case of Neuroendocrine Cancer, I know that I have accepted that NED and Cured will never be a part of my prognosis. Indolent, however, I am happy to embrace. Being indolent also means that most likely my disease is evolving. That might be progression, or it might not. But I know for sure that it is not stagnant.

We, here at NCAN, recognize that a healthy mindset with this disease requires an understanding of the most basic labels and classifications. Knowledge is power when dealing with an incurable (at present) disease. We encourage you to visit the Resource Room and Glossary on the NCAN website and to take advantage of the Podcasts and Videos available on the NCAN YouTube channel to stay educated and informed. Also, make time to join us at an upcoming Patient Conference where you can build your NETs knowledge surrounded by the support of the NET Community.

January 1, 2023

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

As we set our sights on our New Year, we would like to share some of the gems of encouragement, motivation, and humor that many of us who attended the NCAN National Conference in Atlanta this past November overheard.

It was enlightening to hear how several patients describe their lives now, post diagnosis of Neuroendocrine Cancer:

“I feel like I am always waiting at the yellow caution traffic light before I can make any decisions”

“Life is like a bowl of jello for me now. Nothing seems stable; my situation is constantly in motion. And, I’m not sure I’m going to like it”

“My life now is like living under a microscope. Every activity, every task must be debated internally to make sure it is worth the effort.”

“This would be fascinating if it wasn’t happening to me.” (This sentiment was a frequent refrain following the medical presentations.)

Goal Setting was a repeated topic of casual conversation among our attendees. Several expressed their desire to use a reward system as a method for keeping oneself focused on self care and acknowledging efforts instead of only completed accomplishments. By setting small, but positive milestones they felt they were able to achieve a sense of hope and give a balance to their lives as they dealt with normal daily activities in the midst of juggling their treatments and symptoms of our disease. Pacing ourselves as we complete our goals was a repeated reminder as well.

A large number of patients shared similar beliefs that a positive attitude is essential to living well with our Neuroendocrine Cancer:

“You can’t focus on good things when you are preoccupied with bad things.”

“Imagination can influence reality.”

“Community is a powerful and positive force.”

“Toxic optimism is not the same as perpetual optimism. Perpetual optimism can multiply and be shared.”

“ Have a vision of how your life has been enriched by our disease.”

“Practice gratitude”

“Get mad, if you must. But then, get over it.”

2023 will bring 5 regional one day patient conferences across the US hosted by NCAN. It is our sincere hope that you will set a goal to attend one near you. Add your voice to the thousands of patients who have attended previous conferences. Together we can make a difference. Together, we are zebra strong.

As always, If you need anything, we are HERE for you.

SAVE THE DATES!
2023 NCAN Patient Conferences

NCAN 2023 Maryland/DC NET Patient Conference

Mar 11 @ 8:00AM – 5:00PM

NCAN 2023 Nebraska NET Patient Conference

Apr 15 @ 8:00AM – 5:00PM

NCAN 2023 San Diego NET Patient Conference

Jun 3 @ 8:00AM – 5:00PM

NCAN 2023 Ohio NET Patient Conference

Sep 9 @ 8:00AM – 5:00PM

NCAN 2023 Miami NET Patient Conference

Oct 21 @ 8:00AM – 5:00PM

November 1, 2022

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Some people are naturally optimistic. Others of us have to work hard at seeing our glasses as half full. Those of us living with a chronic disease such as Neuroendocrine Cancer often find ourselves needing to cultivate a new type of optimistic attitude.

As a popular saying goes, you can give an optimistic person a long stem rose and they will see only the bloom while a pessimist will only see the thorns. I doubt we can totally change our natural tendencies, but we can and we must find a mind set to address our disease with a resilient attitude.

“We don’t see things as they are. We see things as WE are.”
So very true. On the days that we are struggling, try to remember that your emotions may be just tied up in today’s particular struggle or set back. We all need a “pity party” every so often. Don’t be the last one to leave your pity party. Just do it, learn from it, and then let it go.

“Imagination manifests reality.”
Make sure you keep your mind focused on the diagnostic and medical facts of your disease and current health. Don’t look for trouble needlessly. Good thoughts vs negative thoughts can not share space in your brain 50/50. Make room for the good thoughts, the positive thoughts, and let them prevail.

“You learn everything you need to know about a person by the way they talk to you.”
Especially now, seek out and surround yourself with those who hear you. You know deep in your heart who asks sincerely “how are you?” and who is asking just to make conversation. Allocate your time and energy wisely. Keep in mind, however, that your words are a reflection of yourself to others. Make sure your words portray yourself as you want to be seen and heard.

“Survival of the fittest is all about evolution.”
So many things in your life have changed since your Nets diagnosis. They will continue to change. Now more than ever, we must be willing to close a few doors, pass on some prior opportunities, and evolve into a lifestyle that we never before anticipated. Try to stay centered on what lies ahead and allow only brief glances into your rear view mirror.

“Gratitude makes everything easier.”
Yes, even living with Neuroendocrine Cancer, there are many, many things to be thankful for. Some days we must look a little harder. Some days gratitude is a struggle. Every day is filled with thorns and roses. When the thorns seem to be winning and multiplying, oh so fast, look harder and deeper for the roses. Make peace with those thorns and allow yourself to treasure those roses. However small, finding them and acknowledging them is a triumph for your day.

Share some of your roses below. And if you find yourself struggling with the thorns, give us a call. We are here for you.

October 15, 2022

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Top Ten Reasons To Attend The NCAN National Conference In Atlanta.

10. No where else can you listen to and visit with 20+ expert physicians and advocates for Neuroendocrine Cancer in one location.

9. Where else can you meet so many people genuinely interested in your diagnosis, incisions, and surgeries?

8. NCAN has been providing educational and emotional support to Neuroendocrine patients and family members since 2003.

7. Black and white looks good on everyone and is always fashionable.

6. Good food! And plenty of it! (Did I mention grits?)

5. Fun Social events including a Comedy show staring Emmy Award winning comedian and NET Patient, Steve Mazan!

4. The Opportunity to talk directly with Numerous Neuroendocrine advocates and Pharmaceutical representatives.

3. Sharing problems with friends can reduce stress by 80%.

2. Meeting other Neuroendocrine patients is a validation of your status as a rare disease patient.

And the NUMBER 1 reason to attend an NCAN NATIONAL CONFERENCE?

1. Attendance is an investment in your health and well-being. The presentations refresh your knowledge and introduce you to new advancements allowing you to become your own best advocate. You will make new friends, meet patients and NET specialists. The connections and Networking opportunities can develop a support system that is unique to patients with rare diseases. You will leave Atlanta after 2.5 days with increased assurance, direction, inspiration. And Hope.

REGISTER HERE

We look forward to meeting you in Atlanta. (We will be the ones wearing zebra stripes.)

And if we can help in any way before then, don’t hesitate to REACH OUT.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

October 1, 2022

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

A recent discussion among NET patients at an NCAN Support Group meeting centered around our feelings of brain fog and a decreased ability to multi task. Whether it be our disease or our treatments, we could all empathize with one another’s struggles to accomplish all that we need and want to do.

These days, I really identify with the White Rabbit from Lewis Carrol’s “Alice in Wonderland”. Once an accomplished multi-tasker in my professional and personal life, my note taking and list making skills are no longer optional, they are mandatory! “I’m late, I’m late, for a very important date.” is not most people’s idea of fun!

Which brings me to the importance two NCAN deadlines:
Sunday, October 9th and Sunday, October 16th.

For those of you planning to attend NCAN’S National Conference in Atlanta November 10-12, October 9th is the last day to take advantage of the special reduced room rates at the Marriott Marquis Atlanta (our event location). There are limited rooms available at the discounted conference rate so REGISTER TODAY!

You won’t be sorry you did. It’s going to be epic, with 10+ LEADING INDUSTRY VENDORS, An exciting AGENDA featuring 20+ EXPERT NET DOCTORS, Information on NEW TREATMENT THERAPIES, and FUN SOCIAL EVENTS with opportunities to meet fellow patients and advocates. And if that isn’t enough, the Marriott Marquis Atlanta is a beautiful venue with two swimming pools, a gym, and a sports bar in case you need to release some pent up energy during the conference. And, being in the heart of Peachtree Center, the Marquis has an indoor connection to the Peachtree Center Station MARTA stop which is an easy, inexpensive subway link to the Atlanta airport.

We are really excited to be back together again and look forward to seeing you there!

October 16th is the NCAN deadline for ordering your exclusive 2022 STRIDE FOR STRIPES WALK ACROSS AMERICA T-shirts! This year, there are 2 designs from which to choose.

Since 2003 it has been NCAN’s passion to educate and support the NET community by raising awareness for NET, providing support for caregivers and people with NET, and funding NET cancer research. Strides for Stripes is one way we do all that, with your help. The 2022 Strides for Stripes Zebra Walk is set for November 20th, but the beauty of a virtual event is that you can walk any day, any time and any place you want!

And money you raise goes directly to programs that assist NET patients, such as our NET Cancer Hotline, Patient Conferences, and Educational Webinars. It’s important that you know it DOES NOT go to sky-high office rent and décor, or personal expenses.

Help us make a difference and REGISTER TO WALK HERE.

We are grateful for your support. And as always if you have any questions please CALL or E-MAIL us.

September 1, 2022

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

PREVENTING PATIENT PORTAL PANIC.

Are patient portals a friend or a foe for you?
Originally met with some uncertainty by many physicians, the patient portal experience is becoming an efficient means of communication about your health.

The 2020 mandate to the 21st Century Cures Act is the blueprint of the patient portal access as we currently know in the US. This mandate was designed to ensure every patient in the US has prompt access to their clinical notes from their physicians. The earlier and larger legislation which started this process grew out of an “open notes philosophy “. These US Government laws were put into place to provide improvement in patient engagement and care quality.

There are numerous rules and exceptions which govern the use of our Electronic Health Records (EHRs). Some medical specialties have standing exemptions; others may exclude information on a case-by-case basis. Under the HIPPA Security Rule, we are assured reasonable and appropriate cybersecurity measures of our personal medical history. Medical facilities and individual medical offices may differ in their emphasis of using our patient portals.

TO MAXIMIZE THE POTENTIAL FROM A PATIENT PORTAL EXPERIENCE, WE MUST PRACTICE THE 5 P’s OF PREVENTING POTENTIAL PATIENT PORTAL PANIC:

1) Previous scans and labs can provide context for what you are getting ready to read in your newest entry. Before checking online, refresh your memory about what is the reason for your most recent activity. By doing so you will hopefully not be distracted by the sheer volume of information available and can focus on the important matters at hand.

2) Prepare a review sheet or a chart from previous labs and scans to highlight what is likely to have the most detailed descriptions. Have a quick and easy reference for values or images that might need evaluating.

3) Proper terminology familiarity is critical to understanding your reports. If you are still learning the basic language of a cancer diagnosis, make a cheat sheet of definitions. Make a point to become familiar with the stock phrases that are used such as in pathology reports. Learn which words prompt your anxiety, fear or misunderstanding, but are actually just medical jargon. Learn how to look up common medical abbreviations. Our NCAN website has an ever-evolving glossary of medical terms and abbreviations unique to our Neuroendocrine Cancer. It’s important to know that some medical phrases have a different definition when referring to Neuroendocrine Cancer. You can Google your lab work’s website to determine normal ranges for your lab work. WebMD, the NIH website, and the NCCN website are also good resources for proper terminology.

4) Practice the pause. When your patient portal entry has a finding in your report that is counter intuitive to everything you know about your case, take a deep breath, and remember that several people have contributed to this report and human error is a real possibility. Do not immediately jump to the conclusion that you have been lied to, etc. Fear and uncertainty are natural emotions for a cancer patient, but their intensity must be tampered down when reading results online. As patients of a rare disease, we must accept the reality that a large majority of the medical community is not overly familiar or current in their knowledge of Neuroendocrine Cancer and it’s rapidly increasing developments. Your local physicians and their clinical staff may not yet be current in your updated entries. Always ask for clarification first instead of accusing individuals of incompetence or negligence.

5) Proper Planning Prevents Poor Performance. Ask your physician how best to utilize your patient portal in communication with him and his office. Viewing and storage of your medical records is but one benefit. Many offices allow you to schedule appointments and request prescription refills via the patient portal. Some physicians prefer that you use your patient portal account as a quick question feature of communication rather than email or phone messages. Assess your personality and your comfort level with your disease. Medical terminology is hard to decipher until you are disciplined enough to educate yourself about your disease and it’s unique language. You owe it to yourself first, and to your physicians, to have the correct temperament to read your charts prior to having the results explained to you by a medical professional. Don’t create more stress by reading reports that might only alarm or frighten you. Wait for your physician’s explanations.

Used correctly, patient access to clinician notes through Patient Portals can improve patient safety and boost patient activism. It’s a wonderful tool to help us each become our own best advocate.

If you are looking to expand your self-advocacy toolbox, remember that NCAN is always HERE for you. Join us at our next EVENT. Check out the RESOURCE ROOM and let us help you on your NET journey.

August 1, 2022

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

AFTER TWO LONG YEARS, NCAN HAS REINTRODUCED THEIR IN-PERSON PATIENT CONFERENCES.

Three regional conferences earlier this year in North Carolina, Kentucky, and Michigan were met with great enthusiasm by patients and professionals alike. The joy of seeing old friends and meeting new ones was surpassed only by the wealth of knowledge shared in each location by highly respected Neuroendocrine specialists. Everyone is talking about how grand it is to be together again!

HERE’S WHAT THE PATIENTS HAVE TO SAY:

“A conference offers richer, broader, and deeper information, super efficiently. And connecting with my peer group is incredibly helpful.” —Newly Diagnosed Patient

“Thanks to my first NCAN patient conference, I was on my journey to absorb every bit of information that my brain would allow. Each subsequent conference leads me further down the path to more knowledge and wisdom about my Nets.” —Patient dx 5+Years

“Attending one of the big conferences is simply amazing. You get to meet a lot of people just like you. You get the latest information from the doctors who are specialists in our cancer.” —Patient dx 5+ Years

MEDICAL PROFESSIONALS AND NEUROENDOCRINE SPECIALISTS ALSO SHARE IN OUR EXCITEMENT ABOUT ATTENDING NCAN PATIENT CONFERENCES:

“It is an honor to participate in an NCAN Conference. A big conference allows us to get the word out to more patients than we can possibly see in our clinical practices.” —NETs Oncologist Presenter, National Conference 2018

“Participation in an NCAN patient conference allows patients to see what we (the Neuroendocrine Specialists) are all about.” —Presenter, National Conference 2018

“A NCAN conference allows patients to interact with NET specialists and ask questions; it allows a camaraderie between patients and caregivers.” —NET Specialist, Multiple Presenter

“As a physician, I also enjoy interacting with colleagues and always continue to learn from them.” —Net Specialist Regional Conference 2022

ADVOCATES FOR NEUROENDOCRINE PATIENTS MAKE UP A SIGNIFICANT PORTION OF ATTENDEES AT OUR CONFERENCES. INDUSTRY REPRESENTATIVES AND FAMILY CAREGIVERS OFFER A SPECIAL INSIGHT INTO WHY ATTENDING AN NCAN CONFERENCE IS IMPORTANT AND BENEFICIAL FOR ALL: 

“I attend the conferences because I wholeheartedly support NCAN’s passion and dedication to raising awareness of Neuroendocrine Cancer and providing support for caregivers and patients living with Nets.” —Clinical Nurse in Patient Services

“Attending NCAN conferences provides the opportunity to meet other caregivers. It is so helpful to meet others who are willing to share their experiences in order to help the families of newly diagnosed Neuroendocrine patients.” —Spouse/Advocate 5+Years

“You can read much of the educational stuff after the event, but you won’t make those special connections, you miss the ‘feel’ of support and the specialnesses of the community without showing up.” —Advocate 10+Years

“Just like live music… you can listen to a CD, but nothing replaces the feeling of being there.”–Advocate 15+Years

This November 10th-12th, please join us in Atlanta for three days of education, support, fun, good food, excitement, and encouragement. Come prepared to learn from experts and from each other. Feel the magic as you meet others who share your concerns and your hopes. Help us lift our voices to bring awareness to Neuroendocrine Cancer.

REGISTER TODAY!

And, if you need some extra support between now and then, we are HERE for you.

July 1, 2022

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Patients who live with a chronic disease such as Neuroendocrine Cancer frequently remark that managing our disease is just as much work as a full time job. We agree whole heartedly! It is work; It takes a lot of effort and concentration which is often in short supply. 

Having a good rapport and healthy conversations with your  physicians is a basic goal for living well with a rare disease. Our doctors know this and value good communication, also. Talking about cancer and hearing about YOUR cancer can be difficult. We need to be fully engaged with our medical teams as we navigate this shared responsibility.

Developing a good rapport starts with a few basic steps on the patient’s part.

1) CREATE A COMFORTABLE ENVIRONMENT FOR CONVERSATION BY ARRIVING ON TIME FOR YOUR APPOINTMENTS WITH THE PROPER PAPERWORK COMPLETED IN ADVANCE.

One recommendation to minimize miscommunication is to have a designated notebook and calendar that accompanies you to every single appointment. If you store your medical information and  scheduling on a device, be confident and competent in your ability to recall the data you need in moments, not minutes.

2) WRITE DOWN ANY QUESTIONS IN ADVANCE, AT HOME, AND PRIORITIZE THE FIVE MOST IMPORTANT.
These are the concerns you bring to your doctor’s attention first, for your peace of mind. If you and your physician are unable to discuss these top five items, ask how you can get answers prior to your next appointment. Can you schedule an office visit whose sole intent is to continue this conversation? Are these topics that can be discussed and answered by his physician’s assistant or nurse practitioner? Is the Patient Portal an adequate means of continuing the conversation?

3) BE HONEST WITH YOURSELF AND YOUR PHYSICIAN, ALWAYS. 
It is our responsibility to present an accurate picture of our current status in daily life. Bring a written record of missed medications, daily anomalies, shortness of breath, etc. Do not be embarrassed to discuss the physical malfunctions of your digestive system. You need to fess up to your doctor if you do not take your medications as directed or cheat on your daily food recommendations. Your doctor can not do his/her best job for you unless he is aware of all the facts.

4) PLAN TO TAKE NOTES OR ASK PERMISSION TO RECORD YOUR CONVERSATIONS WITH YOUR CELL PHONE.
Let’s face it, some of us have trouble remembering what we ate for breakfast! Add a little “white coat” anxiety to the situation and recalling what was said at a doctor’s appointment, after the fact, can be a real challenge. Also, sometimes it hard to listen and absorb information while taking notes. Recording the visit (with permission) or bringing a friend/advocate to take notes for you can be helpful, too.

TEN FAST TRACK TIPS FOR ROUTINE APPOINTMENTS
1) Arrive on time, unrushed, and prepared.
2) Dress comfortably for your labs or procedures.
3) Arrive fed (or not, depending upon lab instructions).
4) Plan for and anticipate delays.
5) Prioritize your 5 most important concerns and bring Rx renewal needs with you.
6) Symptom changes to discuss with your physician: joint, bladder, or bowel pains; shortness of breath, sleeping difficulty, headaches or vision changes, changes in your medications, mental health, and physical inabilities.
7) Stay focused and be truthful with yourself and your doctor.
8) Try to voice your concerns and feelings in a positive way.
9) Repeat instructions back to your doctor and take notes as needed.
10) Ask for clarification, additional literature or an additional appointment for a more in-depth discussion and understanding of any new issues.

Lastly, listen to your physician with the intent to understand and to stay focused on your health concerns. Your 15 minutes is precious to you and to your doctor. And if  you need any support before or after  your doctor visits we  are HERE for you.

June 1, 2022

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

“Take My Breath Away”
“Every Breath You Take”
“The Air that I Breathe “

These were 3 of the songs which played through my headphones during my recent MRI scans.

Scanxiety is a relatively common buzz word in our Neuroendocrine social media sites. Is it real? Is it silly? How do I deal with it?

Scanxiety Can Be Divided Into Two Camps:
Those who are anxious about the results of the scans and those who are anxious about the actual scan itself. Both are valid concerns and both can be managed.

For those who fear the results, educating yourself about the needs for the scan and the possible outcomes can help manage anxiety. Good communication with your medical team is paramount and can lead to a confidence in their willingness and ability to guide you on your NETs journey, whatever results the scan may bring.
Trusting that they are always working in your best interest can lead to a sense of peace.

For patients who struggle with the scans themselves, the cause of angst and the solutions can be quite varied.

A CT scan for many is simply a matter of inconvenience. The dreaded Contrast drink before hand, the waiting, or the multiple images that might be needed, are typically not cause for great angst, just a seemingly major time drain.

A recent advent of several Radio-tracer scans are a source of protocol unfamiliar for many NETs patients. These uncertainties can be alleviated by a phone call to the facility and a short conversation with the nuclear medicine technicians. The scans themselves are fairly quick and typically uneventful.

MRI scans, however, can be a monumental source of anxiety for many patients. Claustrophobia is real and often times, not pretty.

If You Struggle With Claustrophobia Here Are 5 Tips That Can Help:

1) EDUCATE YOURSELF.

Call the radiology department to ask which type of MRI machine has been reserved for your scan. Ask about the availability of an open MRI machine or a Wide Bore MRI machine. Policies on being sedated may vary between facilities so make sure you know those options and arrive prepared.

An Open MRI machine is not a narrow tube and should not cause any claustrophobic emotions. A Wide Bore Machine is still a closed tube, but it’s opening diameter is approximately 70cm as opposed to the 50-60 cm diameter of a regular machine. 10cm is a huge difference in my claustrophobic mind!

The technicians are typically happy to answer any questions (even the dumb sounding ones) to help reduce your anxiety; it makes their job easier once you arrive.

2) DRESS COMFORTABLY AND DON’T BE RUSHED THE DAY OF YOUR SCAN.
Follow all dietary restrictions (they will vary between facilities) and plan a reward afterward.

3) ONCE YOU ARE ON THE TABLE, GET COMFORTABLE.
Let the technicians position you with pillows and wedges as needed. Ask that your arms be “swaddled” next to your body (or over your head) so that you can relax slightly without fear of brushing up against the tube walls. Ask for folded sheets to be placed under your arms to help keep them cushioned. Close you eyes BEFORE the table begins to move. Keep them closed the entire time, period. You can also ask for a small cloth to be placed over your eyes, if you prefer. Remember to breath through your nose, not your mouth.

4) LISTEN TO MUSIC.
Hopefully your facility has provided headphones with your musical choices to help muffle the loud noises. To distract yourself, count the songs. A typical radio selection lasts 4 minutes. Keep track on your right hand of the number of songs and use the left hand fingers to track the sets of five. This will allow you to track the length of time passed somewhat accurately without asking “are we done yet?” every 5 minutes.

5) THANK YOUR TECHNICIANS.
Genuinely and often. An attitude of gratitude goes a long way for the patient and the technicians. Your good experience is dependent upon their job performance.

If our goal is to live well with Neuroendocrine Cancer, we must accept the necessity and inevitably of scans and tests. This is an opportunity for a NETs patient to be a team player with their medical advisors. Increasingly, our Neuroendocrine specialists are relying on scans more than lab work to diagnose and manage this disease. If we expect them to perform their best for us, we must be willing and able to give them our best efforts as well.

We hope you will visit the NCAN Glossary to familiarize yourself with the variety of scans and their purpose or better yet, join us at an upcoming NCAN Patient Conference. Other Resources and Links for managing the emotional challenges are available as well. Remember, we are a phone call away and we are here to help.

May 1, 2022

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Physicians and psychologists tell us that a cluttered mind and a cluttered life can be detrimental for those living with a chronic illness. On a daily basis, Neuroendocrine Cancer takes up so much mental and physical space that life can quickly become overwhelming. Let’s do all we can to streamline those actions and thoughts which can distract us from a good quality of life.

1) NOW is the time to give yourself an assessment of how well you are living with your Neuroendocrine Cancer.
Winter is hopefully behind us. Spring time is always a season of growth and new beginnings. Take a few moments to look back along your NETs journey and mentally shelve the bad experiences in order to focus on those experiences which will continue to lead you forward.

2) ELIMINATE EXCESS.
Clear out your Neuroendocrine notebooks and files. Consolidate reports and shred duplicates. Compile a list of missing files to request from medical records departments. Join your physicians’ patient portals to utilize for record keeping and effective communication. Clean out your medicine cabinet and pill boxes. Verify expiration dates and make note of renewal dates for your medications. Properly dispose of expired medications and replenish your OTC medicines and supplies. Update your first aid kit.

3) TAKE INVENTORY.
Update your physicians’ contact information and medication lists. (Find Helpful Forms HERE) Schedule your annual appointments for the dentist, optometrist, primary care, and all other “routine” doctor visits. Schedule preventative health appointments, making sure you are current on shots and vaccinations. Request referrals for those health issues which have been overshadowed by your oncology obligations.

4) SET GOALS.
Be realistic in setting goals for diet selections and exercise ambitions. Acknowledge long term goals such as drafting a will; a Living Will; a Durable Power of Attorney for Healthcare. Being proactive in these matters early insures less future stress. Focus on what you can do to enhance your life. Join a book club, renew friendships, learn a new language, or plan a trip. Make time for fun. Let go of what you expected your life to be like right now and focus instead all that is good. Write down that which grieves you; then let it go to make room in your life and in your mind for the positive that will build you up.

And always remember that we, at NCAN, are here to help you live your best life with your Neuroendocrine Cancer. We have educational and support opportunities in place to offer assistance whenever you might need. Reach out if you need us.

April 1, 2022

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

1. NETS CANCER TYPICALLY IS A MARATHON, NOT A SPRINT.
In other words, pace yourself.
If you find yourself in the majority of Low to Mid Grade NET patients, you have the time to set forth a mindset that you will be living with this disease for many years. You have time to plan and educate yourself on your current and future treatment options. You have the need to develop a personally comfortable acceptance of your disease.

2. “THE WOUND IS NOT MY FAULT. BUT THE HEALING IS MY RESPONSIBILITY.”
This quote by Marianne Williamson can be empowering. Once you have moved past the shock of your NETs diagnosis, it is time to become proactive in your healthcare. It is your responsibility to work with your medical personnel to develop a healthy and productive dialogue. It is your responsibility to understand your physicians’ recommendations and instructions. It is your responsibility to follow those instructions. It is time for honest communication with your physicians and family.

3. MAKE TIME TO MARCH IN THE SECOND LINE.
In New Orleans, the Second Line Band is a treasured symbol for moving forward following a tragedy. A Jazz funeral is comprised of two bands. The first band marches behind the family and plays slow, somber songs to respect their grief. But as the last sorrowful trumpet note sounds, the drum beat of the Second Line (band) picks up the cadence and the music is played to celebrate a well lived life. The Second Line is a reminder to live a joyful life. It is an invitation to celebrate life. Many cancer patients enter a phase of mourning following their diagnosis. This is normal and even healthy. But, as the Second Line teaches us, give your grief the respect it deserves, but set your sights on the possibilities of joy.

4. “DON’T LET YOUR STRUGGLE BECOME YOUR IDENTITY. “
This quote by American poet and songwriter, Ralston Bowles, gives us insights into life’s many struggles. Big or small, infrequent or chronic, struggles must be addressed and resolved so as not to become bogged down by them. It is imperative to retain a sense of self worth and identity if we want to live well with NETs. We need to skillfully categorize our struggles. Hold the little issues close and deal with them quietly, perhaps. Share your larger struggles with those who are equipped to offer you support and encouragement. Share your biggest struggles, mental and physical, with your physicians.

5. “FALL DOWN SEVEN TIMES, STAND UP EIGHT.”
This ancient Japanese proverb is a timeless, well worn piece of advice. It is appropriate in any of life’s situations, but especially in the life of a cancer patient. The shortened version of these 7 words is HOPE.

Without hope, no amount of positive thinking is beneficial.
Hope is what allows us to mourn and continue to move forward.
Hope challenges us to be our own best advocate.
Hope invites us to share in the responsibilities of our healthcare.
Hope encourages us to be reminded of our healthier selves with the intent to reclaim that identity again.
Hope says never, ever give up.
Hope affirms that perhaps today wasn’t my best day, but I will try again tomorrow.

At NCAN, hope is part of our mission; it’s why we exist.
If you need help in any way, REACH OUT, we are here for you.