The Countdown is ON!

The countdown is on as today we are just over ONE WEEK OUT from the 2016 National NET Patient Conference weekend in New Orleans, LA!!

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Unable to attend? Subscribe to NETCancerAwarenessBlog for exclusive sneak peaks and updates about the 2016 National NET Patient Conference! Something tells me there will be some vlogging going on that will have some important information that you WON’T want to miss! =]

NCAN is so excited as we get our last minute details ironed out for you!

Look closely here for some addional details and events that have not yet been published:

Thursday- In addition to the opening session, which includes a patient panel whose panelists are medical professionals AS WELL AS patients you will enjoy a really exciting cooking demo featuring neuroendocrine cancer patient friendly recipes.

Friday- 5 PM – Grab a smoothie and a cookie made with neuroendocrine cancer patients in mind, courtesy of one of the conference sponsors, Novartis.

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6 PM – join us for a light snack and networking while you wait for a private comedy show….

7 PM – ENJOY THE COMEDY OF NATIONALLY ACCLAIMED COMEDIAN AND EMMY AWARD WINNING WRITER STEVE MAZAN. STEVE WILL BE PERFORMING A PRIVATE SHOW JUST FOR ATTENDEES OF THE CONFERENCE. DON’T MISS THIS ONE!

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This event is sponsored by: NCAN Bandaid

Sunday- 8 AM to noon – Group Leaders Meeting. If you are a group leader and have not signed up yet, please call us ASAP at 866-850-9555 or email info@netcancerawareness.org if you would like to attend. You MUST sign up today if you would like to attend.

Here’s a more detailed look:

Thursday

Noon- Registration table open

1 pm – 4 pm- Thursday talks and patient panel

4 pm to 6 pm- Novartis Cooking Demo

6 pm to 9 pm- Welcome reception

 

Friday

7 am- Registration and breakfast

7:45 to noon- Morning general session

9:30 – 9:45 break

noon to 1 pm- lunch

1 pm to 5:15 pm- Afternoon general session

2:45 – 3:00 break

4:30 pm – 6:15 pm- NET-friendly smoothies and cookies provided by Novartis

6:00 pm – 7:00 pm- Pre-show snacks

7:00 pm – 7:45 pm- Comedy show- Laughter is the Best Medicine starring Steve Mazan

 

Saturday

7 am- Breakfast

8 am – noon- Morning general session

9:30 – 9:45 break

noon – 1 pm- lunch

1 pm – 5:30 pm- Afternoon general session

2:45 – 3:00 break

 

Sunday

8 am – noon   Group leaders’ meeting

 

Also, here is the agenda for our General Sessions:

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A few more reminders:

  • Please bring extra layers of clothing! The conference rooms DO get cold, please be prepared!
  • For patients: please bring extra medication, in case of emergency! And take pictures of your medication bottles on your cell phone in case you were to lose them!
  • As always, the conference is a safe space for patients. It is a place for learning about a better quality and quantity of life. Please refrain from self-advertisement and solicitation at our conference. If you are caught soliciting, you will be asked to leave for the remainder of the conference without refund. NCAN and our sponsors thank you for understanding and helping us keep this space focused on what is important.

Keep your out for a post on Friday about some of my MUST SEEs and MUST HAVEs while in NOLA! Be sure to subscribe now to be the first to get it right to your inbox!

2016 LungNET Conference Video Recordings

Happy Monday, fellow Zebras!

Some of you may have seen that NCAN and The Healing NET Foundation have been slowly releasing the videos from the LungNET Conference in Denver, CO on June 11th. Here is a place where you can get all the links in one spot!

Introduction to the 2016 LungNET Conference:

Visit NCAN’s website here. HNF’s website here, and for more information on Dr. Liu, you can get that here.

Basics of Lung Neuroendocrine:

For more information on Dr. Ramirez, you can see my post introducing him, here.

Pathology for Lung Neuroendocrine

You can find more information on Dr. Ryan here.

Surgery of Lung Neuroendocrine:

You can find more information on Dr. Parker here.

Pulonary Medicine for Lung Neuroendocrine:

To find more information on Dr. Kobitary click here.

Medical Therapy for Lung Neuroendocrine:

For more information on Dr. Öberg click here.

Clinical Trials in All Neuroendocrine:

For more information on Dr. Liu, see above links to Dr. Liu’s introduction as well as The Healing NET Foundation website.

Non-Medical Management of Metastatic Disease:

For more information on Dr. Nutting, click here.

Questions and Answers Part 1

Questions and Answers Part 2

NCAN would like to thank all of their speakers, sponsors, and attendees for another successful event!

Want to experience an NCAN NET Patient Conference yourself? Please keep up with NCAN by adding yourself to their mailing list by going to their website and be sure to “like” NCAN on Facebook! Also, keep your eyes out here, on NET Cancer Awareness Blog for some awesome announcements for 2017 coming soon!!

Upcoming: The 2016 National NET Patient Conference in New Orleans, LA!! If you haven’t already, check out that information here because time to register is running out!!

Survey on Cancer Education for Children

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

Wednesday Thoughts…

Happy Wednesday!

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

googledoctor

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