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Five Reasons to Attend a Neuroendocrine Cancer Patient Conference

~ Tricia Wahmann-Knatz ~ Leave a comment

Educational opportunities. No matter how experienced you are about handling your disease, everyone can learn. Being treated for a rare cancer can often be isolating, and without exposure to a variety of points of view, we can miss new ideas and trends that can impact our futures. The educational aspect of a conference can expose you to new treatment regimens and therapies and help you discover how to be a more productive advocate for your treatment and care.

Networking with peers. Patient conferences provide a great opportunity to network. Often patients and caregivers from different regions of the country can become valuable resources for referrals and best-practices. Avoiding your peers for whatever reason you have can actually limit you own success in fighting neuroendocrine cancer. You will find that the people who come together at a conference can help each other uncover ideas and spark inspiration when they get to know each other on a personal level.

Encounter the vendors & suppliers who provide the therapies you need. Too often people shy away from exhibitors at conferences. They fear they will have to talk to salespeople, but these industry suppliers are some of the best people for you to get to know if you want to learn more about the current direction of treatment. Discovering innovative products and services for your business is critical to your treatment and care in today’s fast-paced world. Invest time with the sponsors at the event and turn them into your friends and allies.

Position yourself as an expert. It has been suggested that well over half the requests by neuroendocrine cancer patients to their physicians for specific treatments are honored. A neuroendocrine cancer patient conference is the perfect opportunity to build your knowledge and become a better advocate for your health! You will hear directly from experts. Save your life by making sure you know enough to participate in your care so you are getting the best treatment plan possible.

Have fun. Being a neuroendocrine cancer patient or caregiver is hard work and it is stressful. All work and no play can get old fast. Patient conferences can add a layer of enjoyment to managing your disease by mixing a social aspect into your patient journey. Taking an extra day at the beginning or end of the trip to explore or visit friends in the region is also a great way to maximize the investment in travel. Never underestimate the power of a little fun mixed with some interesting people!

The internet won’t replace the conference experience. Many falsely believe that since they can now access industry information via the internet that the days of the live meeting are gone. The truth is, meetings are more important than ever. The value in meetings comes from the human-to-human connections that occur. Often people cite the serendipidous “hallway-conversations” that they have with other attendees as the most valuable parts of attending an event. While these are not on the agenda, or mentioned in the learning objectives, when two or more people begin to discuss topics on a deeper and personal level, the success of the event to those involved becomes irreplaceable. It is the people that bring the ROI to your time at a conference.

NCAN has 4 conferences scheduled for 2017. Why not make it your business to attend at least one of them?

Saturday, March 25th – NET Patient Conference – Charlotte, NC (Registration open NOW!)

Saturday, April 22nd – NET Patient Conference – Lexington, KY (Registration open NOW!)

Saturday, May 6th – NET Patient Conference – Seattle, WA (More information to come!)

Saturday, October 14th – NET Patient Conference – Iowa City, IA (More information to come!)

Favorite Food & Drinks in New Orleans

~ Tricia Wahmann-Knatz ~ Leave a comment

Happy Friday Zebras! With less than a week out to plan, I’m sure many of you are looking for things to do outside of the hotel and conference. I’ve made a little list of some of my favorites for you!

Starting out, the first absolute must-have is the classic beignets. If you haven’t had a beignet before, it is a delicious fried dough pillow covered in lots and lots of powdered sugar.

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You can find beignets in a lot of locations throughout NOLA but my personal favorite and probably the most well known are from Cafe Du Monde. Cafe Du Monde has a bunch of locations but the classic location is on Decatur Street, where you can run into this crazy location and hopefully grab a table to enjoy your treats and enjoy a Cafe Au Lait while people watching in this buzzing location.

For more information on Cafe Du Monde, you can find their website here!

 

I’ve gone back and forth with drinking coffee but when in NOLA, I have at least a cup a day. My next must-have is coffee from probably what is my favorite coffeehouse ever. PJ’s Coffee has many different flavors for all taste types as well as assorted other drinks and pastries for a quick breakfast or just an afternoon pick-me-up. My personal favorite drinks include the seasonal flavors Southern Wedding Cake, English Toffee, Frozen Hot Chocolate, and even a Mimosa!

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For PJ’s Coffee locations, you can find them here!

 

If you like burgers, you will LOVE Yo Mama’s Bar & Grill! I came across Yo Mama’s on accident. I’m allergic to seafood and many of the places my friend and I had looked at menus for didn’t have many nonseafood options. The last restaurant we went to, we asked the host if he had a recommendation for us where we could just get some burgers and a drink and he gave us directions to Yo Mama’s. Funny enough, if you don’t know what you’re looking for, you’d probably just walk right past it! We did! It’s a small, hole in the wall bar but the food is delicious! I ordered a plain Cheddar Cheese Burger with a baked potato on the side and was blown away! After taking some family back for dinner that night, they had gotten the Peanut Butter Burger, which has peanut butter and bacon on it, I knew I had found a gem of a location.

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To see the full menu and to get more information on Yo Mama’s Bar & Grill, you can visit here!

 

I LOVE martinis so finding a martini bar in NOLA was high on my list of priorities. A personal recommendation sent me straight to The Bombay Club at 830 Conti Street and it didn’t disappoint! They have many specialty drinks and going in a group of 8, we each had something different that we all enjoyed. The atmosphere was great, the live music was good and the company was even better. The delicious martinis were just the cherry on top.

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For the menu and more information and the backstory of The Bombay Club, you can find on their website here!

 

No NOLA trip is complete for me without grabbing a Voodoo from Lafitte’s Blacksmith Shop Bar. Located on the corner of Bourbon and St. Philip, this historic building is considered the oldest structure in the U.S. to house a bar. Voodoos are SO delicious and very very strong. Even a small one of these, I was only able to drink maybe a quarter of it before I had to stop drinking it, in fear of not being able to continue drinking at the rest of our stops. If you grab a Voodoo, I wouldn’t plan on needing to drink anything else!

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For more information on Lafitte’s Blacksmith Shop Bar and its history, click here!

 

Lastly, is Mr. B’s Bistro. I really don’t have enough great things to say about Mr. B’s. The food and service is always amazing! You can find Mr. B’s at 201 Royal Street. If you plan on heading to Mr. B’s Bistro, you will definitely want a reservation!

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To see Mr. B’s Bistro menu or to make reservations, you can visit their website here!

I hope you guys enjoy my favorite NOLA spots! If you happen to check any of them out, be sure to let me know your thoughts and share your favorites with me!

Also, before you make any plans, remember to check out our conference agenda to not coincide with our unbelievable weekend! If you need the agenda, you can find it here!

*Many photos were taken from Google. Only Yo Mama’s photo is my own.

Tricia Knatz Appointed to Board of Governors of National Association of Nonprofit Organizations & Executives

~ Tricia Wahmann-Knatz ~ Leave a comment

Tricia Knatz Appointed to Board of Governors of National Association of Nonprofit Organizations & Executives (NANOE)

Washington D.C. – 09/14/2016 – The National Association of Nonprofit Organizations and Executives (NANOE) is pleased to announce the appointment of Tricia Knatz to NANOE’s prestigious 2017 Board of Governors. Knatz will be honored alongside fellow Governors March 7-8, 2017 in Columbia, SC at NANOE’s 2017 Capacity-Building Convention & Expo. This 2-day caucus is critical to charity’s future and will rely on a myriad of industry experts to re­new, improve, strengthen and distribute a new set of guidelines that super-charge nonprofi­t capacity-building.

“Charity” has been paralyzed by a set of failed “best practices” that turned the Non-Profit Sector into a Non-Growth Sector decades ago. Present day systems were established in the late 1950’s by industry associations that knowingly persist in methodologies detrimental to the general public. In response, the National Association of Nonprofit Organizations & Executives formed a working group of thought-leaders (renowned practitioners, volunteers, academicians and philanthropists from around the world) to research and develop a new set of capacity-building “competencies” that empower nonprofit in ways previously thought to be impossible. This esteemed group has completed phase one and will submit 60 new key practices to NANOE’s Board of Governors for evaluation. Governors will review, expand and/or redact these key practices during annual convention and will emerge with a new set of competencies that increase sector impact.

Headquartered in Washington, D.C. NANOE is the only unifying nationwide association for charitable organizations and executives who serve the human welfare, education, healthcare, faith-cause, environmental and arts sectors.

Survey on Cancer Education for Children

~ Tricia Wahmann-Knatz ~ 1 Comment

How much is too much (or not enough) to tell children about a parent’s cancer diagnosis?

Cancer education for children is something I am extremely passionate about. I have very strong views on this matter, having lived through this myself. I get asked all the time about what a parent should say or how much to say to their children when it comes time for the “Big C” discussion. On the other hand, since about the age of 12, I have also heard from hundreds of kids, like myself, who are on the receiving side of the information, who feel they haven’t been given enough.

This is something that I have been thinking about a lot the last few months and have tailored my ideas moving forward specifically for children of parents with NET Cancer. (Keep your eyes peeled this fall!)

I have been approached by CancerEd: a team of faculty and students from Calvin College in Grand Rapids, MI. CancerEd is working to create free content to be used teach K-12 students about cancer in a scientifically accurate, yet sensitive manner with materials that are age-appropriate. They already have a few of these lesson plans that can be viewed on their website CancerEd.org.

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In efforts to keep developing quality content and to tailor these curriculums, they have reached out with a survey to better understand the conversation and tools being used (or needed) by parents (or caregivers) who have cancer (or had) in order to facilitate these highly important and difficult discussions.

Please take the time to fill out this anonymous survey and please pass this survey on to anyone who can participate in order to gather this extremely important information!

CancerEd Parent Survey

A huge thank you to anyone who takes the time to fill this survey!

If you have any questions or concerns reguarding this survey, or if you would like a PDF version to fill out or pass on to others, please reach out to me at tricia@netcancerawareness.org or leave me comments here!

Thanks again!

Tricia Wahmann-Knatz

National Cancer Survivors Day 2016

~ Tricia Wahmann-Knatz ~ Leave a comment

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Happy National Cancer Survivors Day!

“There are nearly 14.5 million people living with and beyond cancer in the U.S. today, and more than 32 million cancer survivors worldwide. On Sunday, June 5, 2016, communities around the world will gather to recognize these cancer survivors as part of the 29th annual National Cancer Survivors Day®.

National Cancer Survivors Day® is an annual worldwide Celebration of Life that is held on the first Sunday in June. It is the one day each year that people around the world come together to recognize the cancer survivors in their community, to raise awareness of the challenges these survivors face, and, most importantly, to celebrate life.

According to the National Cancer Survivors Day Foundation, administrator for the celebration, “A ‘survivor’ is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life.””

To read the official press release on National Cancer Survivors Day, please click here.

For more information reguarding National Cancer Survivors Day, the National Cancer Survivors Day Foundation, and what you can do to celebrate, please visit www.ncsd.org.

I’m so thankful to be one of the millions of survivors who are able to celebrate this day!

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Tell me how YOU are celebrating today!

Together Everyone Achieves More

~ Tricia Wahmann-Knatz ~ 1 Comment

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Last Wednesday, I posted about the importance of knowing the ins and outs of your disease. Today, I’m expanding a little bit on something I said:

“Your care should be treated as a team, not a one person show.”

According to Merriam-Webster, team is defined as “a number of persons associated together in work or activity, a group on one side.”

Why is having a multidisciplinary medical team so important?

The most important aspect of treating a NET patient is a care plan that it is tailored to suit the individual. Neuroendocrine cancer care can be complex and for the patient the journey can encompass not only a whole host of emotions, but also a wide range of tests, treatments and health care professionals. Since there are often multiple treatment options available throughout the course of the disease, collaboration is essential among all key health care personnel who are making clinical decisions for individual patients.

In order to deliver the highest quality care to individuals with neuroendocrine tumors, a NET cancer patient should be referred to a center where there is a multidisciplinary team. Ideally, this collaborative group would be led by an expert in the field of NET cancers and include physicians from a wide range of specialties. Though patients may not always see an expert with a multidisciplinary team, it is important to have a NET specialist partnering with other physicians the patient is seeing to ensure the best treatment.

Patients feel more confident in the knowledge that all aspects of their care have been discussed and the best possible treatment plan has been formulated. A well-coordinated and disciplined team are a very critical aspect for care when striving to achieve the best quality of life and the most positive outcomes for NET cancer patients.

In the case of a doctor being unwilling to work with a patient’s NET specialist and the rest of their care team, it is crucial to fire this physician and find one who is willing to work as part of the team.

*Please remember that doctors work ***FOR*** YOU and you do not have to stay with any physician who is not giving you the care that you need or deserve! If they aren’t listening to you or other physicians in your care team, please move on. Sometimes we are lucky enough to like a doctor even though they are not providing the best or right care. Liking a doctor is not a reason to stay with them.*

I hope everyone is having a great week! Until next time…

Tricia Wahmann-Knatz

Wednesday Thoughts…

~ Tricia Wahmann-Knatz ~ 2 Comments

Happy Wednesday!

I came across this funny cartoon that I thought I would share.

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This little cartoon is a reminder that WE usually are and should be the MOST informed person in the room about our disease. Just because a doctor says that they “know” about NET Cancers doesn’t really mean that they KNOW about NET Cancers.

Nothing truly scares me more than when a patient of any kind just 100% trusts a doctor, believing that doctors know everything so they don’t want to know or need to know the ins and outs of their disease because a doctor wouldn’t steer them wrong. The only truth in that manner of thinking is that a doctor wouldn’t be purposely steering you wrong.

Think about this: Yes, doctors go through a ton of schooling to become knowledgeable overall about anatomy and physiology and even a specific specialty but there is so much to learn about the human body that they cannot possibly learn everything there is to know about it in that time period. So maybe, if we’re really lucky, they possibly heard Carcinoid or NET Cancer once in their schooling but it’s honestly not all that likely that they remember the one time it was mentioned.

Seeing a doctor who will not continuously educate themselves to help treat you is detrimental to your health. It is so important to work with doctors who are open to being educated and up-to-date on the newest treatments and what options are out there. They should be open to your opinion and what you bring to the table because NO ONE will fight for you the way that YOU fight for you. Your care should be treated as a team, not a one person show.

There are so many ways to educate yourself. Join support groups, both online and in-person. Connect with other patients. (PLEASE be careful with what information you read and take online. Remember that every NET patient is different and not everything you see on the internet is true!) See a NET specialist, or TWO. Most importantly, take advantage of seeing NET specialists speak at conferences, not only do they help with the basics but they give you the most current information there is out there about our disease!

What you don’t know can harm you.

NCAN has our huge 2016 National NET Patient Conference coming up this September! This conference gives you the chance to connect with 500+ patients and caregivers with 20+ speakers in the NET specialty over 2 and 1/2 days! It is such an informative, important, and fun weekend!

For more information, click here.

To register directly, you may do so, here.

Until next time…

Tricia

A Reminder for Self-Care

~ Tricia Wahmann-Knatz ~ Leave a comment

As we approach the weekend, I’ve decided that we need to take a moment to make a post that isn’t exactly directly related to NET Cancer but is important to our overall wellness. Self-care is something that is often overlooked when you are busy seeking treatment and going about your every day trying to live as normal of a lifestyle as possible. This goes for both patients and caregivers alike. Sometimes, we all reach a point where everything about our everyday life becomes too much and we need to take a much needed step back to regroup and relax.

This is where I’m going to get personal. Not only am I the daughter of a NET patient, but I am one myself. Alongside that, I am newly diagnosed with Adrenal Insufficiency (caused by damage to my pituitary by a non-NET related tumor) and have also struggled with chronic pain for pretty much my whole life and some other strange TBD symptoms. With the SAI (Secondary Adrenal Insufficiency), I am currently under trial and error while learning my new “normal” being steroid dependent and it definitely takes its toll on me.

In my middle-of-the-night Facebook browse, I came across this article/blog post in one of my SAI support groups and I couldn’t help but get right on here to share with you all. So here I am at 4AM writing this (you guys won’t see this until probably 8AM EST though)…

The post I’m introducing to you here is “101 Self-Care Ideas for When It All Feels Like too Much“. We ALL definitely relate to this feeling more often than we would like to admit so this is such a great reminder of some ideas that we could try out when we need to give ourselves some TLC, aside from taking care of our physical symptoms.

 

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This post is from a website called The Mighty and I found this site about 2 1/2 months ago around the time I joined in on the AI support groups on Facebook and I’ve pretty much become addicted. The Mighty is a site that features all different independent blog posts submitted by people around the world, all with disabilities, mental illness, rare or chronic diseases and the people who love people with these conditions. It’s amazing to read and I could spend hours and hours reading on here. I’m 100% sure this won’t be the only entry I’ll ever share with you.

I hope you guys enjoy reading this and be sure to try a few of these out. Let me know down in the comments what works well for you, personally, when you find yourself feeling like this.

Until next time..

Tricia