NETSTalk

August 1, 2024

By Anne Dabbs, 
NCAN TN Support Group Leader, NET Patient
and
Tom Wilson,
NCAN WI Support Group Leader, NET Advocate

Since 2006, Medicare enrollees have had the opportunity to participate in Medicare Part D which is the coverage available for prescription drug costs. Participation in Medicare Part D is available to Original Medicare participants and those who purchase Medicare Advantage Plans. The coverage and administration of Medicare Part D plans has been a work in progress since its inception.

Starting in 2025, Medicare Part D will see significant additional changes aimed at reducing out-of-pocket costs for beneficiaries, thanks to provisions in the Inflation Reduction Act. These changes include a new out-of-pocket spending cap, elimination of the coverage gap phase, increased cost-sharing responsibilities for Part D plans and drug manufacturers, and the introduction of monthly payment options for out-of-pocket costs.

There are six key Medicare reforms which were passed in 2022 as part of the Inflation Reduction Act (IRA). Some of these changes went into effect in 2023, several more in 2024, and the final ones will take effect in 2025.

2025 Medicare Changes:

1. $2,000 Out-of-Pocket Cap:

• Beginning in 2025, Medicare Part D will cap out-of-pocket drug costs at $2,000 per year. This cap will be indexed to rise annually based on per capita Part D costs. This change is particularly beneficial for patients with high medication costs, such as those with neuroendocrine cancer who often require expensive treatments (KFF) (MedicareFAQ).

• This $2,000 cap is an exceptionally beneficial change for those of us with multiple expensive drugs for our Neuroendocrine Cancer and other ailments. These changes will eliminate the “donut hole” experienced by many. A basic example of the changes which have occurred in part due to the Inflation Reduction Act is as follows:

2023 – Here is an example of one of our NETs drugs – Everolimus or Afinitor. The cost of Everolimus (Afinitor) is approximately $18,167 per month or $218,004 annually. The NETs patient out of pocket responsibility was $10,484 in 2023 which included costs through the various Part D stages leading up to the catastrophic stage where they paid 5%. If other drugs were taken (i.e. Xermelo) this would be additive. Much of the out-of-pocket expense was paid in the first month or two, a very heavy burden to the patient.

• In 2024, the maximum out of pocket dropped to about $3,300. This was usually all or mostly paid in the first month or two of the year, an onerous amount in the beginning of the year. In the Everolimus (Afinitor) example above, a patient would save $7,184 just on this one drug.

• In 2025, the maximum out of pocket will decline to $2,000. This would be for any drugs a NETs patient might take such as Everolimus, Xermelo, Creon, etc. The changes in 2024 and 2025 will save thousands of dollars for NETs patients who take these high-cost drugs.

2. Elimination of the Coverage Gap (Donut Hole):

• The coverage gap, where beneficiaries previously paid a larger share of drug costs after a certain spending threshold, will be eliminated. This ensures continuous coverage and more predictable costs throughout the year (MedicareFAQ).

3. Cost-Sharing Adjustments in Catastrophic Phase:

• In the catastrophic phase, the share of costs covered by Part D plans will increase, and Medicare’s share will decrease. Drug manufacturers will also be required to offer price discounts in this phase, further reducing costs for beneficiaries (KFF) (Medicare Rights Center).

4. Monthly Out-of-Pocket Payments:

• For the first time, beneficiaries will have the option to spread their out-of-pocket costs into capped monthly payments, making it easier to manage and budget for prescription drug expenses (MedicareFAQ) . This is similar to the leveling of charges for natural gas or electricity. This may be referred to as “cost smoothing” or “MP3” in the marketplace.

Impact on Neuroendocrine Cancer Patients:

Patients with neuroendocrine cancer often face high costs for their medications. The new $2,000 out-of-pocket cap will significantly reduce their financial burden, as these patients can quickly reach the catastrophic coverage phase due to the high cost of cancer treatments. The elimination of the coverage gap ensures that these patients will not experience a sudden increase in drug costs during the year. Additionally, the ability to spread out payments will help patients better manage their finances (KFF) (Medicare Rights Center).

Government agencies which oversee Medicare Programs have made publications available which fully explain the additional reforms beginning January 2025. In September 2024, existing Medicare enrollees will receive their Annual Notice of Changes (ANOC) from their Plan administrators which will include these new benefits among other considerations. Newcomers to Medicare will find the appropriate information in the office US government Medicare handbook “Medicare & You 2025” which is mailed to prospective enrollees several months prior to their 65th birthday.

Individuals with chronic illnesses will especially benefit from becoming educated about Medicare and the Medigap Supplemental Plans. Every state has free resources available to enrollees to help you better understand your options.

To connect with qualified Medicare experts before you begin your search for an insurance company you can:

• Visit the Medicare.gov website to start a virtual chat.
• Call the 1-800-Medicare support line (800-633-4227).
• Reach out to a counselor at your State health Insurance Assistance program (SHIP) whose link is found on your state’s dot gov website.
• Find a licensed Medicare enrollment specialist through the national Council of Aging.

5. Important Reminders as You Consider Your Medicare Coverage Choices:

1) Medigap plans (mostly frequently named by letters such as Plan G or Plan K) are standardized, but not all plans are offered in every state. Not all insurance companies may sell policies for a particular plan in your state.

2) Compare the benefits of each lettered plan available in your state to help you find the one that best meets your needs now and potentially in your future. With a chronic condition like NETs, you will most likely not be able to switch Medigap providers so choose wisely.

3) Once you have selected the Plan you feel is best for your needs, talk to other insurance companies which sell the standardized plan in your state.

4) Call your State Insurance Department for a list of companies selling policies in your state. Be sure to ask if they have any complaints registered against those companies.

5) Your local State Health Insurance Assistance Program (SHIP) is not connected to any insurance company or health plan and can provide free consulting to help you determine which company offers the best selection and pricing to meet your needs. The benefits in each lettered plan are identical regardless of which insurance company you consult. Price is the only difference between the same lettered Plan policies sold by different companies.

The changes to Medicare Part D in 2025 represent a major shift towards more affordable and predictable drug costs for beneficiaries. For patients with Neuroendocrine Cancer, these changes offer substantial financial relief and improved access to necessary treatments. Beneficiaries should review their current plans and consider these new options to optimize their coverage and reduce their out-of-pocket expenses.

If you need support, NCAN is here for you. Don’t hesitate to reach out if you need us.

* The above information was compiled by using the following links and helpful resources for better understanding Medicare. The information contained here is not a specific recommendation for any choice for any patient. Our recommendation is to avail yourself of comparisons and expectations for the best Medicare program for your individual needs.

Helpful Resources:

GOVERNMENT SITES:
Medicare.gov
CMS.gov (centers for Medicare and Medicaid Services)
HHS.gov (health and human services)
Healthcare.gov
USA.gov
Shiphelp.org

COMMERCIAL AND ADVOCACY WEBSITES AND VIDEOS:
Medicareinteracive.com
Kkf.org/medicare
Boomerbenefits.com
Gohealth.com
Healthline.com
Nasi.org
Medigap vs. Medicare Advantage | Which Is Best for You in 2024?
Comparing Advantage VS Supplemental COST on $200k Hospital Stay
Ranking The BEST Supplemental Plans For 2024!
WARNING: Why I Would NEVER Choose An Advantage Plan for 2024!
Hospitals Are Dropping Medicare Advantage Plans

July 1, 2024

By Anne Dabbs, 
NCAN TN Support Group Leader, NET Patient
and
Tom Wilson,
NCAN WI Support Group Leader, NET Advocate

Remember back to the first paycheck you ever received and your surprise at seeing an amount less than what you were anticipating… all due to a line item called FICA. Your parents or your employer probably gave you a simplified explanation of your contributions to the Federal Insurance Contributions Act which was appropriate at that time. Perhaps now, as you are inching closer to retirement age, it is important to have a refresher course. This US Federal payroll tax has been earning you credits to qualify for Social Security programs which provide Medicare and Social Security benefits for retirees, children, and people with disabilities.

A Brief History of Medicare
· 1965 – Medicare introduced for those 65+
· 1972 – Medicare expanded for those under 65 with disabilities
· 1980’s – Rise in the introduction of expensive specialty drugs
· 2006 – Part D (Medicare drug plan) introduced to help offset cost of drugs
· 2024/2025 – enhancements to Part D (coverage cap, etc).

75% of Medicare recipients spend more than 10% of their income on health.
Many can’t/couldn’t afford drugs and therefore walk away from the pharmacy counter or take fewer than prescribed.

One third haven’t taken their medication in the past year due to cost.

Medicare is constantly evolving. These incremental changes have almost always been beneficial for Medicare recipients.

This month we want to share basic Medicare facts which will serve as a primer for ready reference as you either sign up for Medicare or anticipate a change in your selections during the annual open enrollment period each year. It is especially important to be aware of basic definitions, options, and changes for those of us living with a chronic disease like NETs.

Basic, Original Medicare consists of 2 parts: Part A (Hospital insurance) and Part B (Medical insurance). Most people sign up for both Parts when they are first eligible (at age 65), but there are options to delay this coverage. Make sure you understand the possibility of a gap in coverage, a recurring penalty, and/or underwriting restraints. We recommend meeting with an independent Medicare health insurance agent before making your decision.

Part A typically does not require a premium payment. There is an annual deductible.

Part B does require a monthly premium payment which is typically subtracted from your Social Security Retirement Check before it is deposited into your bank account. In 2024, this premium was $174.70 monthly. There is an annual deductible of $240 (2024). After the deductible is met there is a cost share of 80/20 which means that once you have paid your deductible, Medicare will cover 80% of your healthcare costs and you will be responsible for 20%.
Since Part B only covers 80% of the costs for non-hospital expenditures (doctor visits, labs, scans, etc), Medigap Supplemental Plans were also introduced in 1966. Since that time, Medigap has expanded and evolved. Medigap Plans cover the 20% of medical expenses not covered under Part B (drugs excluded). Medigap plans are sold by private insurance companies and became regulated in 1980. In 1990, Medigap plans began to offer standardized coverage. These plans do incur a premium payment which typically increase annually. There are no preapprovals with Medigap. If Medicare pays for it, Medigap automatically pays the balance of 20%. Medicare submits the claim to your Gap plan automatically. You don’t need to file anything.

The so-called Part C of Medicare evolved out of a decision in 1997 to allow private insurance plans to be an alternative for beneficiaries. The original name of ‘Part C’ was ‘Medicare+ Choice’. Today it is known as Medicare Advantage which is a confusing misnomer that many recipients confuse with traditional Medicare and mistakenly purchase it thinking they have Medicare. It was established by the Balanced Budget Act of 1997 and later rebranded to Medicare Advantage under the Medicare Prescription Drug, Improvement, and Modernization Act of 2003. A premium payment is often incurred for Medicare Advantage Plans, and typically are at least the same amount as Part B or more depending upon the plan you choose. The deductible, out of pocket maximums, and cost shares will vary. Medicare Advantage plans are noted for frequent and ongoing preapproval requirements and denials of service.

Part D of Medicare serves the purpose to help offset the cost of prescription drugs for individuals enrolled in Traditional Medicare (Parts A and B). Part D usually requires a premium payment which will vary upon the plan you choose. In 2024, there were major changes occurring to the rules and regulations for Part D Plans. More are coming in 2025 and beyond.

In summary, an enrollee has two main plan options for selecting Medicare Health Insurance Coverage.

Original Medicare which includes Parts A and B. In addition, you must determine if you want a Supplemental Medigap Plan and/or a Part D Prescription Drug Plan. These are both highly recommended for those with NETs.

OR

Medicare Advantage Plan Part C which is equal to Parts A and B and you must determine if you also want a Part D Prescription Drug Plan (if your Part C plan does not include prescription drug coverage). Medigap Supplemental Plans are not available for Medicare Advantage Plans enrollees.
You can sign up for Medicare during a seven-month initial enrollment period around the time you turn 65. A general enrollment period is from January 1-June 30 each year, but coverage will not begin until July 1 and you may face late enrollment penalties. Every year there is an Open Enrollment period from October 15-December 7, during which time you can make changes to your coverage.

Prior to the Open Enrollment Period, in September every year a Medicare Plan enrollee receives an Annual Notice of Change (ANOC). This information from your existing plan includes any changes in coverage, costs and more that will be effective from the following January. It is the enrollee’s responsibility to review their coverage each year to determine if their current plan continues to meet their healthcare needs.

As a Medicare enrollee with a chronic illness such as Neuroendocrine Cancer, it is important to be well informed and advised about all options available and possible contradictions as you select your Medicare coverage Plans. Items to be clarified may include:

· Avoiding an underwriting process for coverage
· Freedom to travel to see nets specialists and receive treatments that may not be local to you without penalty. Medicare Advantage plans which provide ‘narrow networks’ of providers may not offer you access to NETs specialists. You should obtain confirmation that you will have access to larger medical facilities which support our rare disease
· Coverage of our specialized scans and treatments (gallium scans, PRRT, etc.).
· Disclosure of cost shares, hidden costs, and surprise out-of-pocket costs for all drugs and treatments. Approval process (if any).
· Delays and denials are a form of cost saving actions undertaken by some plans whose premiums are almost too good to be true. Delays and denials can be hazardous to a patient with a rare, incurable disease such as ours.
· Availability of Medicare Saving Programs and Extra help Programs
· A more than basic understanding of the primary differences between Original Medicare Plans and Medicare Advantage Plans

Understanding Medicare is crucial for managing your health, especially when dealing with a complex chronic condition like Neuroendocrine Cancer. This guide aims to simplify the intricacies of Medicare, helping you make informed decisions about your healthcare coverage.

We understand that navigating Medicare can be overwhelming, particularly when specific needs and treatments must be considered. By staying informed and utilizing resources available through reputable sources, you can ensure that you choose the best coverage for your unique situation. Always remember, we are HERE for you. Reach out to us for any questions or support you need in navigating your NETs journey. Together, we are zebra strong.

*The above information was compiled by using the links below as well as helpful resources for better understanding Medicare. The information contained here is not a specific recommendation for any choice for any patient. Our recommendation is to avail yourself of comparisons and expectations for the best Medicare program for your individual needs. Again, it is highly recommended to consult with an independent Medicare health insurance agent in your area before deciding on coverage.

GOVERNMENT SITES

Medicare.gov
CMS.gov (centers for Medicare and Medicaid Services)
HHS.gov (health and human services)
Healthcare.gov
USA.gov
Shiphelp.org

COMMERCIAL AND ADVOCACY WEBSITES and videos with additional information

Medicareinteractive.com
Boomerbenefits.com
Gohealth.com
Healthline.com
Nasi.org

Medigap vs. Medicare Advantage | Which Is Best for You in 2024?
Comparing Advantage VS Supplemental COST on $200k Hospital Stay
Ranking The BEST Supplemental Plans For 2024!
WARNING: Why I Would NEVER Choose An Advantage Plan for 2024!
Hospitals Are Dropping Medicare Advantage Plans

June 1, 2024

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

“Action is the antidote to anxiety.” 

What a helpful concept, I thought when I stumbled across this tidbit!  I failed to note which social media site gave me this insightful thought, but I do remember that it was not a cancer themed article.  Nonetheless, I knew immediately that this was a powerful message for those of us living with Neuroendocrine Cancer.

Anxiety is perhaps the most reoccurring theme of our social media patient posts. Considering that our hormones are directly affected by this disease, we should not be surprised.  We need to acknowledge the frequent general sense of angst that this form of cancer gives us.

What are actions we can insert into our daily lives to keep the anxiety at bay?  Knowing that we cannot totally escape the worry, how can we turn negative thoughts into positive actions?  I offer you these four simple suggestions:

1) Perform daily activities with intent and positive energy.  

Try a mindset of “Hey!  Take that, Net cancer!  Look what I accomplished today despite your interference!”   

Break your work and chores into manageable spurts of action and schedule breaks as needed.  

Make to do lists and proudly cross items off no matter how small.

Prioritize physical activities to keep your mind and body limber.

2) Engage in small acts of advocacy.

Post or share a Neuroendocrine Cancer awareness message on social media.

Reach out to a fellow Nets patient just to say “Hi, I am thinking of you.”

Develop a record keeping system for your medical reports and appointments that keeps you on pointe for your calendar.

Sign up for patient portal messaging with your physicians to streamline communications.

3) Expand your knowledge of Neuroendocrine Cancer in general, and your diagnosis in particular.

Knowledge is empowering and will develop your confidence in living well with this disease.

Avail yourself of the many patient conference videos and physician presentations by our Neuroendocrine advocacy groups. 

Refresh your memory of what your lab values mean.

Look up in medical and manufacture literature the known side effects of your treatments so that you can live with awareness, not fear, when new symptoms present themselves.

4) Personalize your Neuroendocrine Community.

Whenever possible, join a local support group.

Attend in person meetings. 

Cultivate friendships with patients with similar diagnosis and temperaments.

Find a cancer buddy to whom you can offer encouragement and will receive encouragement in return.

But what about those days when it takes every ounce of energy to even think about crawling out of bed?  It’s true for so many of us that each morning seems like a coin toss.  Will this day be full of energy and accomplishments?  Or will it be a day of barebones survival?

There is positive action to be had on those hard days too.  Some days, survival depends on our recharging our bodies and our minds.  For those days, I offer the following poem by Jarod K. Anderson.  Mr. Anderson offers us positivity set in seemingly inactivity.  Please take his words to heart and hold them close when you need time to recharge.

I am not okay today.
So, in the absence of okay,
what else can I be?

I can be gentle.
I can be unashamed.
I can turn my pain into connection.
I can be a student of stillness.
I can be awake to nature.

I can sharpen my empathy
against the stone of my discomfort.

I am not okay,
but I am many worthy things.

—   Jarod K. Anderson

In the face of the uncertainties and challenges brought by Neuroendocrine Cancer, it’s vital to remember that you’re not alone. Together, we can find strength in action, solace in stillness, and support in our shared experiences. Reach out to your NCAN family whenever you need guidance, encouragement, or simply someone to understand. We’re HERE for you, every step of the way.

May 1, 2024

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

Online support groups are an asset for so many in our Neuroendocrine Cancer Community.  Most of us have exclaimed more than once “I never heard of NET Cancer until I was diagnosed with it!”  Another common refrain is that many of our physicians’ knowledge about our disease is outdated and limited.  No wonder that so many NETs patients embrace the opportunity to communicate with one another. But, for this means of communication to be beneficial for all, we need to recognize a few basic understandings.

Facts are not opinions.

Opinions are not facts.

Every Net Specialist I have spoken to agrees that Neuroendocrine Cancer is heterogeneous. The dictionary tells us that means diverse in character or content.  Just as a zebra’s stripes are its biomarker, our disease is different and unique to each one of us.

Net Cancer is not one size fits all.  My experience and your experience can be worlds apart in diagnosis, treatments, and prognosis, but we are both net cancer patients.  What has worked for me, and my situation may be totally inappropriate for you.

I believe to be a good advocate for yourself, you must also be familiar with the larger scope of NETs, and not just your own individual experiences.  I also firmly believe that if you wish to be active in helping other patients by participating in online discussions, you must also be aware of the differences in addition to the similarities of our disease.  I do not believe that my fellow NETs patients ever intend to give poor advice, but oftentimes, incomplete, or misdirected advice pops up in our groups.

How can we improve the quality of our exchanges?  As patients, we must acknowledge that we are sharing our anecdotal experiences with one another.  The details of one patient’s situation may not be true, reliable, or relevant to another’s experience.  We can offer suggestions and opinions based on our experiences, but actual advice is best left to our physicians, researchers, and specialists.

I have found that the best conversations among patients include awareness of similar primary sites or grade values.  It is beneficial to clarify that you understand what the poster is truly asking and don’t make assumptions without first checking the original post.

Offer suggestions instead of directives by phrasing your reply: “You may not be familiar with this treatment, but what about…?” Or, “I ‘m just wondering if you and your physicians have considered this…?”  Another way to make sure your information is heard can be phrased “Without knowing all of the important details, but have you considered…?”

One of the greatest benefits of online conversations is that we have a safe place to vent about the frustrations of living with an incurable, variable disease. For some, this opportunity is the greatest benefit.  “I want to make sure you realize that you are being heard, I cannot share a similar experience, but I feel your angst.”  “One time I was experiencing something very similar to yours and this is what helped me”.  Or even the powerful acknowledgment: “Are you wanting to vent right now or are you open to advice about this situation?  I can do either.  Just tell me how to help.”

If, by chance your contribution to the conversation is met with defensive replies, try to make a repair by saying “perhaps we have a misunderstanding.  Did I miss an important detail?  Did I make a wrong assumption?  Are you feeling unheard or misunderstood?”  And, please, if  you are corrected by another, politely ask for a reference for their statement and thank them for wanting to help you.

Hopefully, these suggestions will assist in having more productive conversations with one another.  A quick self-check that you are framing your dialogue as anecdotal experiences or facts that you can cite a resource will go a long way in making respectful comments. Kindness and compassion are hopefully our guides.  We need one another.  We need additional conversations.  Together, with the support of NCAN and our community, we can continue to uplift and empower each other on our path to resilience and healing. Zebra Strong!

And as always, we are HERE for you if you need us.

April 1, 2024

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

Way back in the early 1980s as a young woman with a career, a husband, aging parents, and young sons, I was inspired by an up-and-coming illustrator, Mary Engelbreit. Her whimsical illustrations highlighting brief quips of encouragement were a breath of fresh air as I learned how to juggle all my loves and responsibilities.

“Bloom Where You Are Planted” is the Engelbreit illustration that has remained with me as my life has progressed to a retired, senior woman with health challenges, but my interpretation has evolved as well. Those delightful images frequently bound by a black and white checked border initially urged me to do the best of my abilities. “Hang on! You’re doing the best you can”, they said to me. “Look for opportunities to do more, better!”

Seeing this phrase now, through experienced eyes, harkens back to the quote’s original author from the 15th century, the Bishop of Geneva, St Francis de Sales. His interpretation more closely follows the advice to grow and flourish no matter your circumstances. Do not live just to survive, but to thrive and to blossom. Its message, I believe, is to encourage us to be content. To find joy and opportunities to help others instead of waiting for our situations to improve. Yes, this can require a certain degree of self-awareness, grit, acceptance, and gratitude, especially with a cancer diagnosis.

But blooming is not a solitary endeavor. Just as flowers rely on sunlight, water, and nourishment to thrive, so too do we rely on the support and companionship of others. Recently, during a Net Cancer Support Group Meeting, I was delighted to experience “Bloom Where You Are Planted” in active engagements among its members. Patients and caregivers alike were listening intently to each other’s sharing of concerns. Afterwards, two patients were candidly exchanging dental challenges and encouraging suggestions. Two more were sharing food choices with a newly diagnosed member. Another sharing how a referral to physical therapy had prompted better agility, stability, and even rest! We were blooming together whether we realized it or not. Sometimes we all see this disease as a dead end, the beginning of the end, and a place of no escape. But what I experienced that day with my friends was a realization that we have not been buried but PLANTED! We can grow, flourish, and bloom despite this diagnosis.

So, when you are feeling overwhelmed, bogged down, and frustrated by the complications of Neuroendocrine cancer, try looking for opportunities to help others. Try sharing your story, your experiences, your gifts. It just may be exactly what you need to feel better yourself.

In the garden of life, community becomes our lifeline, offering comfort, guidance, and companionship along the way. Remember, we are always HERE for you! REACH OUT if you need us because with NCAN no one fights alone.

March 1, 2024

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

I first heard this phrase from another NCAN Support Group Leader a few years after I was diagnosed with Neuroendocrine Cancer. It was an unfamiliar analogy for me at the time, but I grasped it’s meaning immediately. Now, a few years later, I really understand it firsthand.

An alternate title for this month’s title could be “Do as I say, not as I do.”. Yep, I’ve been down “the rabbit hole” for the past several weeks, and I can tell you it’s just not a fun place to be. It can be lonely, counterproductive, and downright scary. Falling into an emotional spiral is an unfortunate and unpleasant mental side effect from living with chronic health concerns.

A recent odd ball lab value at my semiannual PCP appointment began my personal decent. Symptoms and lab values were not in sync. Each new blood draw led to another one, and then to another one. This was an unfamiliar situation for me, and my frustration began to evolve into doubt and then fear. My normally rational brain went dormant, and I was emotionally missing in action from my everyday optimism.

“Healing is not a linear journey. There will be peaks and valleys. Enjoy the peaks and learn from the valleys.” — RD Rowland

This quote from a respected author helped me regain my footing while deep inside my lonely rabbit hole. Living with Neuroendocrine Cancer does indeed have peaks and valleys. I’ve learned to enjoy those peaks, and not to get too comfortable there and lose my perspective. Peaks are not guaranteed and oftentimes unsustainable. There will be valleys inevitably, and if we can learn from those experiences, they can become beneficial learning opportunities. I learned that I must not allow my valleys to turn into rabbit holes. I learned to retrain my overthinking.

I tried hard to think more rationally. What is the worst-case scenario currently facing me? What is the best? And which is most likely?

It helps to examine overlooked feelings that are a part of the negative thinking.
What am I really scared of? What am I most disappointed about in this situation? What am I sad about now? What am I ashamed about? Has this experience traumatized me? Do I have regrets? Identifying those separate emotions can help to reduce their power over negative thinking patterns.

It helps to schedule specific worry time. Try a 30-minute break to face your problems constructively. Avoid ruminating when there isn’t time to deal with the issues. This practice will allow you to whittle down your worry list and update action steps until you no longer have concerns.

“The human mind cannot entertain two narratives simultaneously,” says a Washington Post article from August 2023. Train yourself to let your unwanted thoughts recede, don’t push them away. Try turning your attention toward a soothing distraction instead. Find happy thoughts (yes, like Tinker Bell) and hold onto to them, tightly. Develop a more soothing language and a kinder tone toward yourself when you find yourself full of worry and stumbling toward a rabbit hole. Be kind to yourself. Learn what your best coping mechanisms are and use them. Don’t allow yourself to become comfortable in your rabbit hole. Reach out to trusted family, friends, NCAN, and health professionals to help you deal with your fears and uncertainties.

My latest test results ruled out my very worst fears. But I’m still waiting for one more result and I am not sure that I will get the complete answer I am looking for. Regardless, I have popped up out of my fearful rabbit hole and am moving forward, once again, with another puzzle piece to my health concerns.

NCAN is here to help as we navigate the challenge of living with Neuroendocrine Cancer together. Please reach out to us HERE if you need any support. No one here needs to fight alone.

February 1, 2024

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

“Sometimes it is not about the journey or the destination, but the people you meet along the way.” —Nishan Panwar

I love to travel! I delight in seeing new places and I look forward to learning about different cultures. But I do not travel lightly. Packing a suitcase is a game and a challenge for me. I must be prepared for anything and everything! A recent trip to Europe highlighted my enthusiasm for new experiences while clinging to my suitcase “essentials”. Those real and those imagined.

Repeatedly during our family vacation, I was reminded of cancer patients’ tendency to refer to their disease as a journey. Phrasing it as such does not bolster any enthusiasm for me, but I often fall into this analogy myself. In lighthearted moments it is easy to refer to dealing with NETs as “It’s a trip!”, but that’s a brief reflection full of double meanings.

I have learned I prefer not to think of this disease as a journey or a trip and definitely not as “an excellent adventure”. I have learned, instead, that I must live my life daily with Neuroendocrine Cancer and I must learn to travel well with it. How I pack and manage my cancer baggage will help me to live well with this disease.

My current essential carry-on case includes pill boxes and sub. Q injection supplies plus the supporting documentation for these prescriptions. A larger than imagined selection of OTC aids (just in case) allow me peace of mind that is essential. A change of clothes and some healthy snacks round out my overstuffed bag. By including these tangible necessities for a very real and ever-present disease, I have learned that I do not pack unnecessary angst worrying about improbable complications.

By trusting in my prior planning and predictable needs, my journey is enhanced, and I can let my guard down to enjoy the unexpected. This is also my goal for dealing with this incurable disease. By educating myself and having a plan of preparedness, living with NETs is no longer a mental struggle, but an experience which can be enhanced.

My life with Neuroendocrine Cancer has opened my eyes to the gift of empathy, the trust of compassion, and the surprise of shared experiences. Others who share my reality and my health concerns have enriched my life in ways I never thought possible. Our paths forward may vary greatly, but we are forever joined.

There is an honor to be among fellow cancer patients which is best expressed by an old Swedish proverb: “Shared joy is double joy. Shared sorrow is half sorrow”. Let’s remember to walk together with this disease celebrating our good news and uplifting one another in our sorrows. Our loads will be lighter, our footsteps more assured, and our community strengthened by our common goals.

One way to do that is by attending one of NCAN’s 2024 regional patient conferences. They allows patients across the US to join together with medical experts and advocates for greater awareness and education. Equally important is the opportunity to meet and connect with others who are also living with Neuroendocrine Cancer. Our patients and caregiver advocates are the stars of these gatherings. It is our shared joys and shared sorrows which strengthen our journey. We hope that you will plan to JOIN US at one of these conferences so that we may all be enriched by those we meet along the way. You won’t be sorry you did.

And remember, if you ever need us, we are HERE for you.

January 1, 2024

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

Making a list of New Year’s Resolutions no longer has an urgency for me as it used to years ago. In fact, some days I resolve to do absolutely nothing but cope. Diagnosed with Neuroendocrine Cancer in 2016, I’ve learned to quickly divide my time and efforts into needs vs wants, essentials vs preferences, urgency vs convenience. I make a deliberate effort to manage my mindset in dealing with this disease.

For 2024, I want to challenge myself to adopt a monthly positive action/mindset. I figure one task per month should be doable and will likely become habit after 30 days of practice.

My Resolutions List for 2024:

1) Utilize my quirky sense of humor to face unpleasantness both in matters of health and family.

2) Give myself pep talks when faced with new health challenges.

3) Ask for help, no matter how trivial the situation seems.

4) Work to approach challenges with a sense of calm and reason.

5) Utilize methods of encouragement for myself and other Net Cancer patients.

6) Build confidence in matters of my health care and acknowledge it.

7) Try something new to keep an active mind. (A hobby, a recipe, a trip, etc.)

8) Offer to help to others, “For it is in giving, that we often receive the most”.

9) Laugh daily. Laugh a-lot, whenever possible!

10) Develop a realistically positive mindset and cultivate it.

11) Dismantle impossible situations into manageable tasks that are resolvable .

12) Always look for silver linings and always give thanks.

I hope you will join me by making your own list of resolutions to help you live well with Neuroendocrine Cancer in 2024. Focusing on positive tasks can create positive feelings. Those positive feelings can then grow into positive actions. Actions create desires and rewards which can add a richness to our lives that we might otherwise miss if we allow our disease to cast a shadow across our minds.

Here’s to a wonderful new year with endless possibility. And remember, we are always HERE for you if you need us.

December 1, 2023

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

“Life Is a Balance of Holding On And Letting Go.” —Rumi

As young children, my brothers and I were entertained by our father’s Mississippi Tales.  His stories told of a childhood far removed from ours and always included a signature quote from a colorful ancestor or two.  One such frequent tale was of a young girl disobeying her parents to go to a square dance with neighboring farmers. Her father, recognizing defeat, called after her as she jumped onto the moving wagon: “Well, Jessie, if you do go, hold on!”  Decades later, I can still see the twinkle in his eyes and his head thrown back in a full laugh every time he uttered this phrase.

I realize now that these tales were our father’s way of giving us life instruction without the risk of our tuning him out. They are perhaps, his parables to us. As I child, I took this story’s lesson as a punch line to envision our country cousins in a much simpler time. Now, I see it was more a message of resilience. 

Every life has hardships. Every passage of time has challenges. And living with a NETs diagnosis can tend to turn up the heat on some of those challenges. How we react to them is where the magic happens. It is a balance of letting go of that which is beyond our control while holding on to what is vital to our well-being that can make all the difference. 

Stephen Hawking is quoted as describing a survivor as one who learns to adapt to change.  This is another reminder that as our lives take twists and turns, we must be ready and willing to change with them. Accepting that change is not always bad. It allows us the opportunity to grow, perhaps to thrive. We must practice letting go of obstacles and yet hold on to that which gives us serenity.

My holiday wish for our Neuroendocrine Community is that we learn to embrace a mindset of self-reliance over the things we can control, like our thoughts, our actions, our reactions.  While we practice letting go of negative notions of life that come with the life of a cancer patient in order to find the calmness and peacefulness that can frame our courage.

“Love the hand that fate deals you and play it as your own.” —Marcus Aurelius

Happy Holidays from NCAN. We are HERE for you if you need us.

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