Worldwide NET Cancer Day

Monday, November 10 is worldwide NET Cancer Day.

NET cancers, caused from rare neuroendocrine tumors or NETS, are the “zebras” of the cancer world. When doctors are in medical school, they learn when diagnosing illnesses that they should be looking for “horses,” or common disease causes, rather than “zebras,” or rare causes. NETS are rare, occurring in approximately 35 in 100,000-cancer diagnosis annually. That is why NETS are zebras, their unique stripes being a symbol of the disease.

The type of NET cancer that I have is a pancreatic neuroendocrine tumor, or commonly referred to as PNET.  

Although NET cancers tend to be slow growing, neuroendocrine tumors can turn into cancers including Carcinoid, MEN-1, Medullary carcinoma, Insulinoma, Gastrinoma, Glucagonoma and many others arising from various organs including the lungs, pancreas, thyroid, stomach and intestinal tract. NETS frequently masquerade as other more common illnesses such as Irritable Bowel Syndrome (IBS), Crohn’s, Asthma and even other types of cancers. 

Dave Thomas of Wendy’s restaurant fame, and Steve Jobs of Apple both died from neuroendocrine cancers. Steve Jobs had the same type of pancreatic neuroendocrine cancer that I have. 

Many doctors are unaware of NET cancers or understand how to treat them. Frequently, they have never seen a NET cancer patient. As a result, patients can go years, sometimes decades, before a proper diagnosis, usually late in the disease. While NET cancers are not curable, with early detection and proper management, they are treated as a chronic condition. By bringing awareness to this rare cancer, we hope that both patients and medical professionals are able to “see stripes” earlier in the diagnosis process.

If you live in or near Minneapolis, MN, the 35W Bridge will show off its stripes today in support of NET Cancer Day.  Hopefully, it will be visible through the snow storm! 

For more information about neuroendocrine tumor cancers, the following two organizations have great websites. Both of these foundations support research for NETS and provide amazing patient support.  

Caring For Carcinoid Foundation:  

Carcinoid Cancer Foundation

Caring for Carcinoid Foundation

As 2013 concludes, I want to share this opportunity to donate to the Caring for Carcinoid Foundation and have your funds matched. This is the only foundation that is dedicated to raising research funds for pancreatic neuroendocrine cancer (my type of cancer) and other neuroendocrine cancers. The Foundation also provides support for individuals diagnosed with these rare types of cancer.  Pancreatic neuroendocrine tumors are diagnosed in 0.3 - 0.4 out of every 100,000 people each year. (Lucky me!!) Because they are so rare, there are minimal research funds available, so foundations such as this one are critical to making strides in diagnosis and treatment. There are many needs in this world, and if this one doesn't fit your giving priorities, then I'm confident you will find other ways to "live and give".  

We are so grateful for your support.  If you have already made your year end gift, please accept our sincere thank you.  If you have not yet made your gift to the Caring for Carcinoid Foundation, there is still time!  Donate now, while there is still time, and take advantage of the $1 million dollar challenge.  Your support, matched by the challenge will continue to fuel progress in 2014.  Remember the December 31st tax deadline. Donations made to the Caring for Carcinoid Foundation  before midnight on December 31st are deductible on your 2013 federal income taxes.  Thank you!   With the help of our $1 million grant from the Goldhirsh-Yellin Foundation,  every increased gift to our year end appeal will be matched dollar for dollar, and every gift increased by 50% or more will be matched two to one - doubling and tripling the impact of support.

4th Annual Worldwide NET Cancer Awareness Day

No, I promise you, I do not have a recipe for cooking a zebra today!!!  But the image of a zebra has become a favorite of mine because it is the designated logo for NET cancer.

What is NET cancer?  Neuroendocrine tumors (NETS) are tumors that arise in the neuroendocrine cells in the body.  Neuroendocrine cells are located in the nervous system and in the endocrine system.  NETS are found most commonly in the lung or gastrointestinal system, but they can also originate in other parts of the body, such as the pancreas and ovary, among other sites. NET cancers are usually slower growing compared to other types of cancer, but are deadly, nonetheless.  The type of cancer that I was diagnosed with in 1998 is a neuroendocrine tumor of the pancreas. 

But I bet you are still wondering why the zebra is designated as the logo for NET cancer. In medical school, doctors are taught, "when hearing hoof beats  think horses, not zebras." But NET cancers are considered "rare" and therefore may be considered to be a "zebra".  Studies show that about 5 out of 100,000 people are diagnosed with a NET tumor of some type each year.

NETS are listed with the National Organization of Rare Disorders and because of their rarity and due to a lack of public awareness, the disease has had low priority for medical research. Please help me in the effort to bring more awareness to NET cancer on Sunday, November 10 which is designated as the 4th Annual Worldwide NET Cancer Awareness Day. I have also listed other valuable resources about NET cancer.  

4th Annual Worldwide NET Cancer Awareness Day

11/10/2013

The 4th Worldwide NET Cancer Awareness Day will be held internationally on November 10, 2013.  Here's what YOU can do to help spread awareness of NET Cancer.  

1)Sign the Proclamation in support of the awareness campaign,

http://netcancerday.org/support-us/sign-the-proclamation

2)View NET Cancer Day videos on YouTube: http://www.youtube.com/netcancerday 

I found these videos incredibly inspiring and uplifting!

3)Sign up for the NET Cancer Day e-newsletter, http://netcancerday.org/

Here are some other useful resources to learn more about NET tumors.  You will see the term "carcinoid" in some of these resources.  Carcinoid is a part of a group of NET tumors, but the websites listed below address NETs and carcinoid.  

Carcinoid Cancer Foundation   http://www.carcinoid.org/
This is the most comprehensive and informative site dedicated to supporting patients diagnosed with a NET.

Caring for Carcinoid Foundation   http://www.caringforcarcinoid.org/
This foundation has awarded over 6 million dollars in research grants to leading scientists working to discover better diagnosis and treatment options for NETs.

Carcinoid Cancer AwarenssNetwork http://www.carcinoidawareness.org/index.html
This site emphasizes ways to increase awareness of NETS and carcinoid.

This link  highlights NET cancer awareness efforts worldwide, but it also contains great videos about NET cancer, some from physicians. http://www.youtube.com/netcancerday

NET Cancer Awareness Day- November 10

Worldwide NET Cancer Day is 

Saturday, November 10.

ZEBRAS Unite!

• NETS are the "zebras" of the cancer world.   When doctors are in medical school, they learn when diagnosing illnesses that they should be looking for horses, or common disease causes, rather than zebras, or rare causes. NETS are rare, occurring in approximately 35 in 100,000 cancer diagnosis annually. That is why NETS are zebras, their unique stripes being a symbol of the disease.

• Neuroendocrine tumors (NETs) arise in cells that can produce hormone-like substances, and arise primarily in the gastrointestinal tract, but can also be found in the pancreas, lungs, and other organs. 

• Neuroendocrine cancer, is listed with the National Organization of Rare Disorders. 

• Because NETs are rare, over 90% of all NETS are incorrectly diagnosed and treated for the wrong disease.  Many patients go untreated for years and have been told they have another disease. Patients with mid-gut NETs for example, have often been told they have Crohn's disease or IBS –irritable bowel syndrome.  From initial onset of symptoms the average time to proper diagnosis exceeds five years. 

• Because neuroendocrine cancer is rare, the public, and sometimes even the medical profession, lacks full awareness. 

• When the tumors are found early and treated, many NET patients can experience excellent longevity. On the other hand, failure to diagnose the disease, or a ‘wait and see,’ approach, has dire consequences, as in the case of Steve Jobs, founder of Apple,who had a pancreatic neuroendocrine tumor similar to the one that I have. 

• Because of the disease’s rarity and complexity, it is important to obtain care at a center specializing in the care of neuroendocrine cancer. There are a handful of such centers throughout the U.S. and in Europe. Notable among these, is the NET clinic within the Ochsner Health Care System in Kenner, LA, just outside New Orleans (504-464-8500).  Having now treated in excess of several thousand NET patients over many years, the team of doctors and care providers in Kenner have a 80% 5 year survival for patients with metastasized small-bowel NETs. 

• Because of the rarity of NETS, it has had very low priority for funding in the medical research arena. With new diagnoses of neuroendocrine cancer increasing by more than 5% annually, the need for funding for medical research for these rare tumors is urgent. 

• Donations are invited to: 

• LSUHSC Foundation NET Research Fund; 200 West Esplanade Ave. Suite 200. Kenner, LA 70065 (504-464-8500)

• Carcinoid Cancer Foundation  

• Caring for Carcinoid Foundation 

The Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation also provide incredibly useful information for people with NET cancer.  

• The MN Support group for NET/Carcinoid cancer is Northwoods Nets. 

Thanks to Jeff Drifmeyer, the NET Cancer Awareness Day website, and the Northwoods Nets group for ideas for writing this blog post.  

                               

Powerful Purple Pzazz Smoothie

November is Pancreatic Cancer Awareness Month!

And November 10 is World NET Cancer Day! 
(NET is the acronym for NeuroEndocrine Tumors)

The Pancreatic Cancer Action Network has chosen purple as the designated color to increase awareness of this deadly cancer.  Please see their website at www.pancan.org to learn more about pancreatic cancer and how you can become involved in raising awareness and participate in raising funds for research.  It is the only type of cancer that has not seen an improvement in the 5 year survival rate in 40 years.  

My type of cancer is a pancreatic neuroendocrine tumor, which is the same type that Steve Jobs died from, and comprises only 5% of all pancreatic cancers. 

Neuroendocrine tumors (NETs) is the umbrella term for a group of unusual, often slow growing cancers, which develop from cells in the diffuse endocrine systems.  They are found most commonly in the lung or gastrointestinal system, but they can arise in other parts of the body, such as the pancreas. 

November 10 is World NET Cancer Day!

For more information about this exciting event, see 

http://netcancerday.org/

The World NET Community was established in March 2010, in Berlin, and works to provide worldwide awareness of NET cancer. 

The zebra is the logo for NET cancer. I will explain more about this another time.  
On November 10 I will be wearing my zebra scarf with a purple blouse!  
Pzazz for sure! 

NET cancers are frequently misdiagnosed and patients are treated on average for 3 - 7 years  for the wrong disease.  There are a number of different types of NETS and they all have a different way of expressing themselves in terms of symptoms as well as how they look under a microscope. 

The Carcinoid Cancer Foundation provides comprehensive and remarkably useful information about NET cancer for the newly diagnosed. 

The Caring for Carcinoid Foundation is another remarkable foundation that focuses on raising funds for research for NETs, as well as providing support for individuals with NETS.   

So, to kick off this important month, I made a Powerful Purple Pzazz Smoothie for my breakfast. A recent addition to my smoothies has been black raspberry seed nutri-powder. Black raspberry (which is different than red raspberry) has been shown in numerous scientific studies to be a potent anti-tumor agent. See below for citations..And while I firmly believe that no extract from any food will ever be as powerful as the synergistic effect derived from eating a variety of nutrient-dense foods, I am eager to add to my cancer "survivorship" in whatever ways possible.  Thus, this smoothie is a Pzazzed and Powerful way to continue to blaze my trail to longevity in November!

Ingredients:
1 Tablespoon Black Raspberry Seed Nutri-Powder (Botanic Innovations is the source I use to purchase my black raspberry seed powder. Other on-line resources are BerriHealth, and there are probably others, too) 
1/2 cup frozen triple berry mix (raspberries, strawberries, blueberries)
1/4 cup frozen blueberries  (I still have some in the freezer from summer 2011!)
1/2 frozen banana, sliced 
1/2 cup Westsoy Organic unsweetened soy milk

2011 Garden Blueberries

Preparation:
Blend in a MagicBullet or blender to desired consistency. 

Nutrition per serving:
Servings per recipe: 1
Serving Size: 1 cup
Calories: 151                                                      
Total Fat: 3 g
Cholesterol: 0 mg
Sodium: 26 mg
Total Carbs: 30 g
Dietary Fiber: 9 g
Protein: 6 g

Citations of some studies supporting anti-angiogeneis and anti-oxident properties of black raspberry extract:
1.  Liu Z, Schwimer J, Liu D, Greenway FL, Anthony CT, Woltering EA. Black Raspberry Extract and Fractions Contain Angiogenesis Inhibitors. J Agric Food Chem 53; 2909-3915,

2. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3184418/

3. Fatty Acid Content and Antioxidant Properties of Cold Pressed Black Raspberry Seed Oil and Meal, J. Parry, Liangli Yu, PhD. et.al.
4.  Inhibitory Effect of Chardonnay and Black Raspberry Seed Extracts on Lipid Oxidation in Fish Oil and their Radical Scavenging,  J. Parry, Liangli Yu, PhD. et.al.

Joyous Day!

Happy Birthday to our son, Caleb!  His wisdom has inspired, blessed, and encouraged me.  September 24 has significance not only because it is Caleb's birthday, but because it was September 24, 1998 when a 14cm neuroendocrine tumor was successfully removed from the tail of my pancreas.  So September 24, 2012, marks 14 years of living with pancreatic neuroendocrine cancer.  While the tumor later reappeared in the head of the pancreas and remains there rearing its ugly head on a daily basis, I never dared to imagine that I would live for 14 years.  

When the tumor started invading the posterior wall of my stomach and the length and quality of my life seemed imperiled once again, Caleb wisely reminded me that it was not how long I lived but how well I lived that mattered.   

During the early years of this journey, I had CT scans every 3 - 6 months and generally received the contrast liquid in small brown vials.  I viewed those vials as perfect tiny vases for flowers, so saved them.  Now I enjoy choosing flowers to be held lovingly by the these make-shift vases.  I take great joy in seeing beauty emerge from what was an ordinary container for a nasty-tasting fluid. Somehow, it is representative to me of how the ugly and painful experiences of this life can be transformed into expressions of beauty and hope.  

Thanks to so many of you who have supported me on this path.  And thanks to those of you who have sent emails telling me of the encouragement and hope and nutritional support you have found on this blog.  You are the reason I keep exploring new ways to find Pzazz in the midst of health and nutritional challenges. 


For more information about any type of   neuroendocrine cancer, I highly encourage you to look at the websites for the Carcinoid Cancer Foundation or the Caring for Carcinoid Foundation.  

The Pancreatic Cancer Action Network is also a useful resource for individuals with pancreatic neuroendocrine cancer. 
  

Caring for Carcinoid Foundation

When I was diagnosed with my first tumor in 1998, I knew virtually nothing about the pancreas or the various types of pancreatic tumors.  I only knew that somehow a 14 cm tumor had grown on the tail of my pancreas and that it seriously threatened my life.  


Since that time, I have tried to learn all that I can about my particular type of cancer, which is a pancreatic neuroendocrine tumor (PNET).  Pancreatic neuroendocrine tumors (PNETs) are diagnosed in only  0.3 - 0.4 out of every 100,000 people each year ( Yao et al, 2008). Steve Jobs, founder of Apple, had a pancreatic neuroendocrine tumor and died from it recently.


A resource that I discovered in  October, 2011 that has been enormously helpful in my quest for current information about pancreatic neuroendocrine tumors is the Caring for Carcinoid Foundation.  This organization is the only foundation dedicated to raising research funds for neuroendocrine tumors and providing information to individuals diagnosed with this rare disease.  


You might be wondering what the term "carcinoid" means and how it relates to my type of tumor. A neuroendocrine tumor can develop anywhere in the body that there are neuroendocrine cells. See the Caring for Carcinoid Foundation website for more information about these types of cells if you are interested. But in the simplest terms, neuroendocrine cells are the connectors between the endocrine system and the nervous system. The most common places for neuroendocrine tumors to begin are in the lungs, appendix, small intestine, and pancreas. Neuroendocrine tumors that start in the pancreas are classified as pancreatic neuroendocrine tumors (PNETs) or islet cell tumors.  When neuroendocrine tumors start in other places in the body, they are usually classified as carcinoid tumors.  PNETs and carcinoid tumors are both typically slow-growing tumors and both have the capability to secrete hormones.  


The only similarity between pancreatic neuroendocrine tumors (PNETs) and typical pancreatic cancer (which is called pancreatic exocrine cancer) is that they both start in the pancreas.  But the diagnosis, treatments and outcomes are vastly different. 


The Caring for Carcinoid Foundation has been an immensely helpful resource for me to stay current about treatments and research for this extremely rare disorder.  I encourage you to visit their website to find out more about this type of cancer and how you might help in raising funds for research. It is a unique organization because it directs 100% of all individual donations to breakthrough research.  It also provides hope and encouragement for anyone diagnosed with pancreatic neuroendocrine cancer.  The logo for their organization is a sunflower, bursting with hope and beauty.