Resilient in the Face of the Pandemic

Since mid-March, The Healing NET Foundation staff and our Board have been working through the challenges these times of crisis have presented. Whether you are a NET patient, caregiver, provider, advocate, or industry supporter, you too have likely felt the additional pressures of receiving and giving good quality healthcare in these times.

When we (Cindy Lovelace, NET patient, and Eric Liu, MD, NET provider) co-founded Healing NET Foundation 7 years ago, we each experienced in a unique way the stresses and gaps in neuroendocrine cancer care. The COVID-19 pandemic adds an additional layer of difficulty to a system that is improving but still has major gaps in delivering the best possible NET care.

During this time, the Healing NET Foundation remains resilient, persevering with our work. We have pledged to always be RELEVANT in providing the NET Community timely, up-to-date resources to navigate the pandemic and how it impacts NET care; RESPONSIBLE in the way in which we operate our finances and programs to ensure a sustainable future in a time of uncertainty; and RESPONSIVE in communication to understand your needs, and making adjustments to our programs to meet those needs.

Specifically, HNF has taken the following steps to better serve the NET Community throughout the COVID-19 pandemic:

• Created a COVID-19/NET specific resource center on our website with input from NET experts in various disciplines.
• Sought input via survey from the NET Community about how the pandemic has affected their care and life
• Convened virtual meetings with leaders of other NET advocacy groups to support one another and the larger NET community
• Partnered with NANETS and other NET advocacy groups to support the webinar, “COVID-19 Information for NET Patients and Caregivers”
• Restructured our planned two-day NET Boot Camp to educate physicians and advanced practice providers into a virtual meeting in consultation with our Medical Director and NET specialist Erik Mittra, MD.
• Rescheduled our annual Summit until 2021 (our participants are medical professionals, patients, and advocates responding to COVID-19 concerns in their own communities)
• Engaged in collaboration on a webinar for nurses about carcinoid syndrome
• Stayed on track with a patient/physician task force working on a new patient navigation guide to share collective wisdom about the NET journey
• Began the creation of a new resource for high grade NEC patients

What has become clear to us in this time is that the need for Healing NET’s signature programs remains, and in a new era of social distancing and unknowns, it is more critical than ever that we find safe, innovative, and sustainable ways to deliver our mission to all who are in need.

As a NET patient and NET provider we continue our commitment to make a difference and are joined by our staff and Board of Directors.

Can you join us too? If you are able at this time, your monthly support or an individual donation can help us remain RELEVANT, RESPONSIBLE, and RESPONSIVE to the NET community we love.

--Cindy Lovelace, Executive Director and Eric Liu, MD, Founding Medical Director.

COVID 19 from NET Patient and Advocate Perspective

The unknown is scary. The news footage shows a reality but what is not known about COVID 19 may unsettle us the most.

Those of us who live with NET cancer may understand this more than anyone. We LIVE with this uncertainty everyday because of our unique diagnosis, the variance in treatments, and the unknown of how and when it’s going to affect us in the future. When someone who is newly diagnosed asks me how do you possibly deal with this unique and frustrating disease, I tell them the most important thing is to find a physician that is uniquely trained and as experienced as possible in understanding this complicated disease, and fits YOUR model of someone you can trust to help you feel safe and welll cared for.

That’s where I live at this moment in the face of COVID19…seeking advice from my NET physicians AND reaching out to my NET community friends who face the unknown every day. I know many of you have that trusted physician, and I encourage you to go there FIRST. I also know many of you are still seeking that expert or because of where you live and/or insurance/financial resources, you struggle to find someone.

Healing NET is committed to helping you bridge those gaps in "normal times"…through education and collaboration.

Specifically during the COVID 19 crisis in the weeks ahead, we will take additional steps to help close gaps in communication...sharing info from experts that may apply to the unique needs of NET patients.

We will also continue to share resources from other NET organizations who are there for you as well. Communication with the people you trust is important when the unknown is scary.

--Cindy Lovelace, Healing NET Co-Founder and PNET survivor

Click here to access our NET Primer by Topic section on Communication and Trust in the Physician/Patient Relationship. While written for HCP's, it underlines the need to find the right NET champion to help you navigate your care.

Healing NET Tapestry: "Faces and Voices of the NET Community"

I love art. It’s always been present in my life. My mother is gifted in crafts and plays piano. Her sister paints beautiful landscapes and replicas of the Masters. One grandma saved her money cleaning houses as a young woman to buy a violin. My other grandma drew pictures of birds and hooked and braided colorful rugs. She also made me a quilt out of scrap material from dresses my mother made me as a child. I love to draw and am trying to be patient enough to paint. Art speaks to me and I think it tells a story the artist wants us to hear.

Maybe that’s why I love stories too. Everyone has one and when we SPEAK the stories, others LEARN and when we LISTEN to the stories, we LEARN. I will never forget the moment I was told I had cancer, both the first time and the second time. The second one was a LOT more complicated. It was a horse of a different color…a zebra.

So, the idea of a Tapestry that weaves together stories and perspectives makes sense to me. Patients, caregivers, health care providers, people who work in the medical industry, and people who just simply CARE, all have a story as to how NET cancer impacts them. By telling our stories, we connect to each other, and show the nuances of neuroendocrine cancer. We share our challenges, our lessons, and our inspirations in order to weave a bigger and broader and more lasting story. Our hope is that others who listen might understand and help us spread awareness and education.

Healing NET Foundation began collecting your stories in the spring. Thank you to everyone who was able to participate in the Healing NET Tapestry: “Faces and Voices of the NET Community”. Please click here to watch beginning 6pmCST November 10. Please leave comments on this blog so that the conversation can continue.

The Tapestry Project: Weaving the Strands of NET Care

Effecting change may begin with one voice, or even two…but in order to see results, I believe it takes multiple voices and cooperation among the many who have a stake in future outcomes.

It reminds me of a tapestry artist with a vision in mind who has to go through the process of choosing colors and painstakingly weaving them together in order to achieve the desired piece.

It is out of this image that the Healing NET Tapestry Project has grown. At this year’s Healing NET Summit, we interviewed people who are invested in NET care. There are many more voices to hear and faces to see out there, like yours! We are excited to have you join us in this effort! We want to read your words, see your photos, watch your videos. See a video to get a taste of this effort and find out how you can participate.

Building Healing NET Foundation has been a step by step process that began with a conversation between a patient and a doctor who saw a big need for helping patients whose doctor didn’t understand their disease and educating those providers to better diagnose and treat the disease. It was necessary to bring together other patients, caregivers, colleagues, and physicians as we formed a Board of Directors and Scientific Advisory Committee. Initiatives like the NET Primer (now updated in a 2nd edition), travel grants and physician exchanges came to fruition from those efforts. Industry support led to the Healing NET International Summit, and networking continues among NET physicians, nurses, advanced providers, and researchers here and abroad.

It takes all these voices and perspectives to work together with a common desire or “thread” to help NET patients achieve the right treatment, by the right team, at the right time. Optimizing care is at the heart of Healing NET's mission.

NET Cancer Awareness Day November 10--Giving Peace and Thanks

I want to ask each of you to pause for a moment of silence and reflection in observance of NET CANCER AWARENESS DAY November 10. Remember the Zebras who have fought the good fight and finished the race in the last year, and imagine peace for their family and friends.

This song was composed by fellow Zebra and Los Angeles Carcinoid and Neuroendocrine Tumor Society (LACNETS) Executive Director Giovanna Imbesi to honor those who have passed and to celebrate those who are enjoying another year of life. Vocalist Lettrice Lawrence brings the words to life in her beautiful performance. (SEE LINK BELOW)

Give Me Peace
Composed by Giovanna Joyce Imbesi
©2018 ASCAP

Give Me Peace
So I may rest now
Let me go
oh, let me go
Free my soul
To the mountains
Let me rest
My body down
And in the dawn
I will be woken
I will be woken
By precious song
Song of love
Sing me love
And hold me
Yes, hold me
Forever on.

LISTEN to a performance by vocalist Lettrice Lawrence at the LACNETS site. This song had its world premiere November 7, 2018!

As we observe another NET CANCER AWARENESS DAY, I'm struck by the people in my life who lift me up daily, who are there when I struggle, and who give me peace. Can you think of someone in your life who is your rock, your biggest cheerleader, and in whose presence you feel safe?

Consider this quote from Meister Eckhart: "If the only prayer you said was thank you, that would be enough."

Who would you say THANK YOU to...on NET CANCER AWARENESS DAY, during the Thanksgiving season, every day?  Who can you offer PEACE?

2018 Healing NET Summit--Chapter Three

"When you drop any new idea in the pond of the world, you get a ripple effect. You have to be aware that you will be creating a cascade of change." --Joel A. Barker

The ripples continue to spread out from the Summit in February. Task forces are at work discussing new ideas on how to support better communication between NET patients and their health care providers, processes to evaluate what services and staff an Advanced Neuroendocrine Center provides, and the beginning work of designing a NET Boot Camp for healthcare professionals. The Healing NET Scientific Advisory Committee is also updating Neuroendocrine Tumors: A Primer for Healthcare Professionals, based in part on Summit findings.

In addition to concrete plans being laid, many ideas were exchanged over meals, in passing and late into the evening that will eventually find their way out into the world. This year's Summit experienced that reality when Dr. Andrew Hendifar presented a paper on the accurate sub-typing of a NET tumor that developed from a conversation he had with representatives of Biotheranostics at the 2017 Summit.

That organic process can also help you see more clearly where not to go. The breakout session group that met to discuss Structure of Expanding Research produced several slides to share with the faculty at large, and one included the statement: "Probably not feasible for Healing NET to fund or coordinate, but don't underestimate the value of face-to-face networking facilitated by Healing NET Foundation." The group recognized what did not fit Healing NET's mission but also saw specific areas where collaboration and sharing could speed discovery.

There are also consensus-building opportunities. The same research group asked the faculty at large this question-- "In an orphan disease, can a well-maintained (funded) database (i.e. ENETS) answer the questions that we have traditionally relied on randomized controlled trials to answer for us?" Seventy-one percent of the faculty answered, "Yes, of course, it's time for real-world data to shine." Other areas where collaboration could foster results are matching patients to clinical trials and agreement on the necessary ingredients for patient selection when studying high grade neuroendocrine cancer.

As the task forces do their work, and as the consensus and collaboration ripples continue to move further out into the NET community, and into society, we see HOPE for enhanced care, more education, and a wider net of awareness about neuroendocrine cancer.

Looking Forward with HOPE

As 2017 comes to a close and I reflect upon all that's happened, it gives me great hope that we're doing something to make a difference. The fact is there are more and more people with neuroendocrine cancer. One study showed that the number of people diagnosed has risen 50% over the past decade and unfortunately, I worry that it is an underestimate. This year, I've seen people from all over the world with neuroendocrine disease, young and old, women, and men, all races. As a patient population, this disease is growing; but as a community, we are growing to fight it.

There have been many accomplishments this year to better diagnose and treat patients. The new NETSPOT Gallium PET scan is much more widely available throughout the United States. The medication Xermelo is now available to help people with carcinoid syndrome. A MAJOR achievement is the imminent approval of the new LUTATHERA treatment (PRRT or Peptide Receptor Radionuclide Therapy) in Europe and the United States! This treatment will be a whole new mechanism of action for treating people with neuroendocrine cancer. Coupled with NETSPOT, it will be a new tool in the toolbox.

I think it will be important to think about 2018 with hope, but also a dose of reality. LUTATHERA, even if it is approved by the FDA here in the United States, will still have some growing pains. Let's go through the possible "naughty" list of things that will likely make it a challenge to get:

•    It will be an expensive therapy.  
•    Insurance companies will probably be slow to adopt and cover   it. 
 •    It will probably take a lot of work from the doctor's office to get it approved.  
•    Only a few centers around the country will offer it
•    Many doctors don't understand it
•    It's a complicated therapy to setup.

With all that said, the true neuroendocrine champions will be ready. For example, we do it here already in Denver because we believe in it, and the known NET experts at other facilities across the U. S. do as well. As leaders in the field, we've been working closely with all the parties to make this a smooth transition. The Healing NET Foundation is dedicating a large portion of the 2018 International Healing NET Summit to discussing the ins and outs of LUTATHERA . We want to help physicians understand what is at stake. Sure, it might be a headache to get started, but it is worth it. I've seen this therapy help so many people.

With just a few days left in the year, I want to thank you all for your support of the HEALING NET FOUNDATION and our Neuroendocrine Community. We are all in this together. Every year, every week, every day is a gift. Being able to work with all of you is truly an honor for me. But there is so much more work to do. Stay strong - stay healthy - I need you all to be warriors in our crusade. Happy Holidays and Happy New Year to you all!

Eric

A NET Caregiver's Story

When I first met Gil Schaenzle this past September, I was immediately struck by her positive demeanor and lovely smile. I was meeting a woman who had lost her daughter six months ealier, and that was after just nine months of frustrating and devastating twists and turns following Anna Rose's diagnosis of a high grade neuroendocrine tumor.

I understand the roller coaster as a NET patient, and I understand what it feels like to be a Mom to two daughers. I had no idea what it felt like to lose one's only child. It was astonishing to me to greet this warm and compassionate woman and have her want to hear MY story, as well as being willing to talk about her story as a caregiver to her belowed daughter. When she told me what a warrior Anna Rose was, I could not help thinking, "she had some good mama warrior training".

Backtrack to when Gil first emailed me about her idea to run in the National Parks in memory of Anna Rose, and to raise awareness about NET cancer--I cried. Tears are underrated, by the way. I think they are very healing. Being willing to publicly share your grief, greet strangers on a trail in the wilderness, and go on NATIONAL TV to talk about your loss as well as hope for other NET cancer patients...well that is also healing, but it takes guts. Gil is a mama warrior.

There is great healing and power in telling your story, and the tears that fall and the joy that is remembered. If you are a NET patient you get it when another patient tells their story--there are parts that resonate with you and assure you that you are not alone. If you are a NET caregiver, you know tears are going to come now and then, and you understand the worries and frustrations and, again, you are reminded you are not alone. If you are family or friends, it's harder to understand but love and compassion help you deal with the uncertainty, and hearing the stories affirms, again, that you are not alone. If you have never heard of NET cancer before but listen to the story of a mama warrior who transcends her own grief to make a difference for other NET patients, you surely can't help but feel connected in some way.

In telling our stories, hearing the stories, and sharing the stories, we connect and harness an incredible power for hope and healing. Our website has a place where you can TELL YOUR STORY.

I encourage you to FOLLOW Gil and her journey over the course of the next year, and tell and share your own stories. You never know who may be connected with that power of hope and healing.

Nutrition Tips for NET Patients 3--by Leigh Anne Burns, MS, LDN, RD

INTRODUCTION by Cindy Lovelace “As Executive Director of the Healing NET Foundation, I have a unique understanding of the NET patient experience, since I am a patient myself. Sometimes, like most of us, I’m not so “patient” when it comes to my care. I want to feel well, and I want to enjoy life. When what I eat seems to be “messing with me”, I get impatient, grumpy, and frustrated.

Every time I listen to a presentation from Leigh Anne Burns, one of few nutritionists really educated and experienced with NET Patients, I pick up a new tip. I remember a conference where I heard I should eat smaller, more frequent meals, and even a tip to drink before and after I eat, but not during. She refers to these methods and the reasoning in her last Nutrition Blog for Healing NET.

What I learned the last time I heard Leigh Anne speak was that the pancreatic enzymes I’d been using might not be effective. (I had a distal after being diagnosed as a PNET in 2011) I learned they might not have enough of the right ingredients or the right balance to do the best job. A sure sign was some symptoms most of us can identify with—yep, the “poop”. I was worried that my cancer had progressed or I would have to completely stop eating some of my favorite foods. What I realized was that I might just have a malabsorption issue. I was not getting ENOUGH digestive enzymes to break down the foods, even though I kept to a low fat diet and rarely ate sugar. But, I had moved to over the counter enzymes because the prescription version I had been given initially gave me some unwanted side effects. As a result of what I learned from Leigh Anne, I researched and learned from other patients that there was a new prescription on the market and asked my physician about it. Since trying it, my symptoms have diminished, and I’m not having the side effects.

It’s a simple thing, but points out why nutrition is so important as a part of our care as “zebras’. In her final notes below for “Operation Preparation”, Leigh Anne mentions factors that can lead to malabsorption—

Even healthy fats such as fish oils in cold water fish (salmon and tuna), as well as plant-based fats such as avocados, olive oil, and canola oil can still be related to malabsorption.

It’s very important to read labels. That healthy reduced fat salad dressing you are using may have a serving of fat increased to 1 Tablespoon. Remember one serving of fats is 1 TEASPOON. Margarines or butter can have more than one serving as well.

Severe fat malabsorption can cause fat soluble vitamin deficiencies as well.

Ask your physician about pancreatic enzymes if you’ve had a dissection. Remember they are taken prior to meals, and it’s important to follow the instructions carefully.
HNF NOTE: Currently there are no national dietary guidelines developed specifically for NETs. On October 18 Leigh Anne will be conducting a Webcast “Nutrition for Neuroendocrine Tumors and Carcinoid Syndrome- Find foods you love!” You can register for this event at www.carcinoidwebseries.com, courtesy of Lexicon.

Nutrition Tips for NET Patients 2--by Leigh Anne Burns, MS, LDN, RD

The diet for helping to manage secretory diarrhea is similar to the diet for treating diarrhea from most causes. It uses guidelines to help absorption such as:

• Good Foods to select are usually higher in complex carbohydrates such as starches with lower amounts of insoluble fibers or whole grains.
• Reduce Foods high in concentrated sweets and sugars such as fruit juice, sugary cereals, added sugars, high fructose sugars, honey, and syrup can increase stools.
• Reduce high fat foods such as those fried in oils, high fat content such as ribs, bologna, pepperoni and other high fat cuts of beef and pork.

Tips to choose foods individuals enjoy and also control symptoms:

• Foods cooked soft and low in fiber may be the easiest to absorb such as potatoes with out skin, rice, crackers, winter squash, breads with 3 or less grams fiber.
• Soft fruits without peels, cooked vegetables
• Fruit juice serving are 1/3 to 1/2cup and may be tolerated better if diluted with water.
• 1 – 2 teaspoons of fats can usually be tolerated but higher amounts of even healthy fats may increase symptoms.
• Read Labels and the ingredient list to identify how much sugar, fat and fiber are in foods. Beware of hidden sugars.

Here is a recommended link for information on hidden sugar in foods: https://draxe.com/hidden-sugar-foods

Here is a recommended link for information on hidden fats in foods: http://healthyeating.sfgate.com/hidden-fat-vs-obvious-fat-foods-1291.html

Dumping Syndrome: Symptoms of dumping syndrome include: feeling weak, dizzy and/or flushed within 30 minutes of eating. Cramping, pain, nausea, diarrhea and/or sweating may also occur. Tips to avoid diarrhea:*

• Eat 4-6 small meals throughout the day
• Try to eat a source of protein at each meal (such as: poultry, red meat, eggs, tofu, milk, yogurt, or cheese)
• Limit concentrated sugars like candies, cookies, soda, juice, and syrup
• Drink fluids 30-60 minutes before and after meals and snacks, but not during meals
• Choose foods with soluble fibers (such as: oats, quinoa, fruits and vegetables without peels, and legumes)
• Avoid extreme hot or cold foods and beverages
• Eat slowly and rest for 15 minutes after a meal with feet up

Click here for a table of foods to avoid and foods to include if you deal with dumping syndrome.

Feel Good by Doing Good

Doing good does a person good. You may find that is true of your personal experience, but it’s also a finding of research. When a person volunteers or contributes to a cause, it can even lower blood pressure. Stephanie Watson, reporting on a Carnegie Mellon study in the Harvard Health Blog, noted that: “The Greek philosopher Aristotle once surmised that the essence of life is ‘To serve others and do good.’ If recent research is any indication, serving others might also be the essence of good health.”

“Operation Preparation” can be a way you can feel good by doing good. Your leadership in creating an online social FUNdraiser for Healing NET Foundation gets you involved in doing good. It’s easy. You tell your story or connection to NETs, upload a photo that reflects you or your connection, and share the page with friends! Not only will it make you feel good, but will hopefully boost the health of your friends who get involved! But let’s take it a step further. It might even touch people you have never met.

One of the challenges of a diagnosis of neuroendocrine tumors is that many people are not aware of the disease and its impact. Creating a social fundraiser is not only a chance to raise funds for an important cause, but also a great opportunity to raise awareness. The more people who have heard of this disease, the better. You never know who you might touch. An undiagnosed patient? A caregiver who needs inspiration? A physician who needs education? Or maybe a media or business person who could take awareness a step further!
Design a FUNdraise that catches on, and you can have impact on many fronts. We hope to receive your application today! Click here to sign up!

A message from Dr. Liu

The 2017 Healing NET Summit of NET expert physicians is one of the programs your contributions support. HNF Co-Founder and Chief Medical Advisor Dr. Eric Liu.

The 2017 Healing NET Summit of NET expert physicians is one of the programs your contributions support. HNF Co-Founder and Chief Medical Advisor Dr. Eric Liu.

Cindy Lovelace: Perseverance over Performance (Walk, Run, or Support--Zebras do it!)

My goal is to start and finish the race. The idea of a 13.1 mile race (Half-Marathon) is pretty daunting. If you’ve never done anything like that before, even 3.1 miles (5K) sounds intense.

Last fall when Cindy Parcell brought up the idea of inspiring fellow Zebras and their friends to join her for the Rock N Roll Marathon in Nashville Spring 2017, I immediately said “I’m in!”. It was not because I’m some elite runner, or even a decent Saturday morning neighborhood jogger. I admittedly like challenges, and I love it even more when people come together to achieve things. I think that’s how we are meant to live. My life is also focused on the commitment made when Dr. Eric Liu and I co-founded Healing NET Foundation—to help neuroendocrine patients get the best and the right care. While it’s important to run the organization to the best of my ability; I also feel a responsibility to be a role model. I can run for those who can’t, and inspire others to do the same.

However, let’s put all the cards out there. I knew in the back of my mind that I had trained and finished an entire Marathon course once before. I was also inspired by “Coach Cindy”. She’s a patient and she runs these races all over the country! Now, she told me her “Panda” team was not leading the pack, but my enthusiasm might have slightly blinded me to some new realities.

When I did that marathon in 2002, I was 15 years younger, I had never had a cancer diagnosis, and I was about 20 pounds lighter. So, when I laced up the running shoes and started in on Cindy’s suggested training schedule back in January, reality set in. My body had changed.

The first reminder was the stretching. I had fallen behind on my yoga exercises, and I needed to stretch…a LOT, before and after. If I didn’t, I’d be hobbling through my day. Then, I was dismayed that one mile on the treadmill was exhausting, AND I was just doing a slow jog. However, I kept going, and even when travel and a respiratory infection interfered, I just took up where I left off and kept plugging away. I didn’t beat myself up over missing a day, or not completing the suggested number of miles. It really reminds me a lot of fighting cancer. From my first cancer diagnosis in 2005 (breast) to my second one in 2011 (neuroendocrine) I’ve always had the mindset to just keep going…ride out the storm…try to keep one step ahead of the beast.

The beast played a big card recently when my husband and I went on a family trip, and we had the opportunity to participate in a 5K. It was fun and in a tropical place, and I was training…so why not! During the race, the neuropathy I’ve dealt with ever since chemo treatments with my breast cancer, reared it’s ugly numbness and pain. My feet felt like dead weights. I had been doing a combination fast walk/run and during the run part, I stumbled a couple of times. I decided then that it was not worth the risk of a fall to push myself to do something that my body just can’t do. However, it doesn’t mean I quit. I find a different way. So, I power walked the rest of the 5K, using mind focusing tricks I learned in my first marathon training. It wasn’t pretty or graceful or fast. I just finished the race.

So, my training is now focused on my walk. I can do a 15 minute mile, and even if I’m not up to that speed on race day for whatever reason, I still have some grace to finish the race under the four hour maximum. It doesn’t matter what place I’m in, or how many people pass me, or how athletic (not) I look. I’m just going to take it a mile at a time, and I am going to start and finish the race.

Timing of surgery (especially with small disease)

I have pretty strong feelings about the timing of surgery.  I understand that when people hear about having ANY kind of cancer they want to have it removed as soon as possible, but that’s not always the case for neuroendocrine.  In general, neuroendocrine tumors are very slow growing and you’ve probably had the tumors for a while.  In a truly newly diagnosed patient, it’s always best to take a deep breath, understand what’s happening, do ALL the tests necessary for the work-up, and then decide what to do.  Maybe that includes getting a second opinion.  Maybe surgery is the best next step.  But at least you’ll have done the proper evaluation and work-up.  

For those who have had prior surgery, maybe been living with disease for some time, and are re-evaluating the possibility of surgery, then it is absolutely imperative to think about the timing.  Remember, surgery is a big deal with associated risks.  We only like to do it when it can provide the best benefit.  In my opinion, if you’re symptomatic and surgery will help, then go for it to relieve the suffering.  If there are no symptoms, then how can you maximize the benefit with one single operation?  Maybe wait until tumors are even a little larger before surgery?  Maybe decide which ones are growing fastest and need to be removed?  See, it’s not so simple, so I always encourage people to think about it and make sure you’re comfortable with the decision.

Dr. Eric Liu
Neuroendocrine Surgeon--The Neuroendocrine Institute at Rocky Mountain Cancer Centers
Co-Founder and Chief Medical Advisor Healing NET Foundation