Category Archives: Goals

Goals for 2020 for WWJ

awareness, Fundraising, Goals,
The goal of a sea eagle is to raise a chick able to survive on its own. The goal of Walking with Jane is to help form a movement against NET cancer that will survive until we finally have the awareness, the diagnostic tools, and the cure we need to put NET cancer in the grave for good.
The goal of a sea eagle is to raise a chick able to survive on its own. The goal of Walking with Jane is to help form a movement against NET cancer that will survive until we finally have the awareness, the diagnostic tools, and the cure we need to put NET cancer in the grave for good.

Planning for success

I am, by nature and by training, a goal-setter and planner. As one of my early mentors said, “Those who fail to plan, plan to fail.” The result is that I am constantly aware of not only what I want to accomplish, but how I intend to reach those goals. I do this in both my personal and professional lives—though sometimes I have difficulty telling those two things apart.

Together, we will make a difference.

In January of each year, I spend several days reviewing where things stand in my life and sketching out what I want to do in the coming year to move closer to my long-term goals. Those plans rarely survive contact with reality. Life has a way of screwing up even the best conceived notions of what to do and how to get there. Jane’s death pretty much annihilated everything I originally had in mind for the last ten years. 

Setting goals

I rarely share my personal goals outside of a very small circle of friends. Jane was that circle 10 years ago. No one has seen more than the edges of those since she died. That’s unlikely to change very much in the immediate future. I am, where that is concerned, a very private person.

Those who fail to plan, plan to fail.

I have no such reservations, however, about sharing what I want Walking with Jane to do. This is a cooperative enterprise—or at least it is supposed to be. I may bear the bulk of the load, but others play a significant role in shaping where and how things happen here. Sometimes, they do so without knowing they are doing so. Other times, they play a more aware role. All of you need to know what I am thinking and where I’m going and why.

Looking at what is

Last year was emotionally difficult. We lost too many patients whose stories and struggles I knew too well. I have no words that will comfort grieving families or grieving spouses in any real way. The loss of a child, a husband, a wife, a parent at too young an age is an inconsolable thing. It underlines how badly we need better awareness among medical professionals and among the general public. It underlines how badly we need better diagnostics, better treatments—and how badly we need to find a cure.

This is a cooperative enterprise…

When we started Walking with Jane, there were too few support groups, too few reliable sources of information for patients written for patients. Today, those things are far easier to find. We had nothing to do with any of that—other people figured out what to do to make those things happen and work. I could see the need, but I couldn’t figure out how to get there. Today, I honestly don’t worry about those things beyond helping people find them.

Goals for raising awareness

But awareness outside of patient groups remains a substantial problem. Despite a myriad of efforts by a wide variety of groups, few primary care doctors or nurse practitioners have any knowledge of NET cancer. If we are to begin catching this disease early enough to make a real difference in the lives of patients, we need to change that. Today, we still only catch the disease in its early stages by accident.

Last year was emotionally difficult.

Nor, despite the fact NET cancer is now the second most prevalent form of gastrointestinal cancer—trailing only colon cancer in the number of patients currently diagnosed with the disease—does the general public have any awareness of NET cancer.  If we are to raise the money to do the basic research that will lead to a cure for this disease, we need to change that.

Legislative goals

To those two ends, Walking with Jane will focus on developing three initiatives in the coming year. Greta Stifel, a NET cancer patient in CT, spent two years successfully crafting and lobbying for a law in her home state that now requires all primary care physicians and nurse practitioners do course work in rare diseases as part of their recertification process. I have promised her we will work with legislators in the rest of New England to pass Greta’s Law throughout the region. We will encourage those in other regions to do likewise, intending to push for federal legislation within the next five years. My thought is we need to learn how the legislative process works at the state level before we take on the federal government.

Today, we still only catch the disease in its early stages by accident.

I know of few patients who have exhibited more devotion to the cause of NET cancer than Greta. She deserves the honor of legislation named on her behalf. Let’s all work to make this happen.

Expanding on past goals

This action will, we hope, be one step in raising awareness among medical professionals. But we need to do more than that. In November, as part of NET Cancer Awareness Month, Walking with Jane launched the #30NETfactsin30days campaign. We reached out to over 500 medical and news organizations with a single fact each day about NET cancer.

Let’s all work to make this happen.

Some student nursing groups picked up the campaign, as did a small group of medical schools. We will attempt to build on that campaign in the coming months with similar campaigns focused on pancreatic NET, lung NET, pheochromocytoma and paraganglioma, intestinal NET, and High Grade neuroendocrine carcinoma. 

More awareness

These two efforts may help to raise awareness among people in the medical community, but we need to find other means of doing so, as well. We remain open to anyone who has materials they would like to share with all levels of medical practitioners. I can think of at least two recently constructed books I’d love to get directly into physician and NP hands.

Walking with Jane launched the #30NETfactsin30days campaign.

The third initiative is aimed at raising awareness among the general public. I’ve honestly no idea how to accomplish this. But I will spend considerable time talking to friends in marketing about how we create our own “ice-bucket-challenge” moment—and how we build on that moment.

Money goals

Money matters. It’s how we pay for the research we need that will lead to better diagnostic techniques and a cure in the long-term—and to a better quality of life for patients in the short-term. Walking with Jane will continue to work on a range of local fundraisers, including craft fair appearances, dinners, miniature and real golf tournaments, sponsorships, and letter-writing campaigns.

… we need to find other means of doing so…

We will continue to have and support teams for events like the Boston Marathon Jimmy Fund Walk and the Pan Mass Challenge. We will continue to advise any team for those or similar events elsewhere.

Expanding funding base

But we will also begin to publish here and elsewhere a series of articles on how to raise money through specific techniques. We already have in hand a piece on how to run a golf tournament, written by someone who has run one of the most successful charity tournaments for the Marathon Walk.

Money matters.

Other articles will include how to draft a fundraising letter, generate a mailing list, run a craft fair, put on a dinner, and put on a miniature golf tournament. Each will be written by someone who has successfully run that kind of event.

Shifting focus

These first five goals evidence a clear shift in Walking with Jane’s focus away from providing medical information and other patient support to raising awareness in the medical community and the general public while continuing grassroots support for helping to raise money for medical research. That shift will also be reflected in the thorough redesign of this website.

…articles on how to raise money through specific techniques.

We will continue to provide links to the best available information and support for patients and their families. However, we will rely on other sites run by other entities to carry the bulk of that load. We will provide links to those sites rather than trying to duplicate their efforts.

Building networks

Once upon a time it seemed there was a need for us to be all things to all people. If that time was something other than a figment of my imagination—and it likely was—that time has now most certainly passed. Increasingly, I see Walking with Jane as part of a network of organizations working on particular parts of the NET cancer problem.

…a clear shift in Walking with Jane’s focus…

One of my goals for this year—and into the future—is to help that network develop in every way that I can so that no one ever confronts the situation Jane and I did in the summer of 2010. 

Finishing goals

With one exception, our other goals for 2020 are pretty simple. First, as many of you know, I spent a part of last year building an office for Walking with Jane in the basement of my house. The organization had largely taken over my study—where it started—my guest room, my dining room, and my living room—and had begun to creep into my bedroom. While the construction is finally completed, I’m still unpacking the preceding seven years of paperwork.

…to help that network develop in every way…

Finishing that and getting the various pieces of paperwork done for the state and federal governments are my next priorities.

Looking beyond

Which brings me, at last, to my final goal for 2020: In 2021, for reasons I’ve detailed elsewhere, I’m taking a year off from most of what I do with Walking with Jane. To do that, I need to recruit some people to take on some of the work I do here. If you’d like to do some of that, I’m willing to train you. Just drop me a line at hp@walkingwithjane.org.

I’m still unpacking the preceding seven years of paperwork.

As always, we face lots of challenges in the year ahead. Together, we will make a difference. We will make life better for every NET cancer patient and their families and loved ones. We will keep working to find better diagnostics, better treatments and—ultimately—a cure. Together, we can do this.          

Tell the world about NET

awareness, Goals, Marketing NETs, NET Cancer Awareness Day/Month
When things get dark, I go for a walk in the woods. It clears my head, but rarely delivers answers.

The frustrations of teaching

I went for a walk in the woods two weeks ago with a good friend. We’d both had a tough week and needed some time in nature to try to put our heads back on straight. She teaches high school kids. A good part of what I do now is teach adults–or try to.

I still don’t know how to do what needs doing.

I find teaching adults far more frustrating than I ever found teaching high school students. Listening to my friend, it became clear that job has become far more difficult–largely because adults with no idea of what goes on in the classroom have increasingly forced their way into day-to-day practice. The paperwork now required would make it impossible for either Jane or I to do what we did.

What we think we know

Adolescents think they know everything. Adults know they know everything. Both groups are wrong. Sometimes teenagers can be reasoned with. Their brains are more fluid–more open to persuasion. They have limited experience and often have discovered how wrong they can be.

I went for a walk in the woods…

Adults… Adults believe their experiences have taught them everything already. They can’t perceive how the very different experiences of others have led them to very different conclusions. Worse, new facts or new evidence don’t seem to change their perspective very much. They believe what they’ve always believed because that’s the way they learned it over the course of their lives.

The problem with adults

Ultimately, both our problems stem from adults and what they’ve done or refused to do–or what they are doing and what they refuse to do. I admit, kids are crazy. But more often than not, adults made them that way. But kids can change fairly quickly and relatively easily with the right help at the right time–except when the adults refuse to let them.

Adults know they know everything.

My problem is I deal almost exclusively with adults. Their beliefs about everything were forged sometimes 40 years ago. Sometimes their beliefs are based on knowledge of that same age–knowledge that no longer is valid. We’ve discovered a lot of things over the course of my lifetime–things that have stood the world on its head.

What we believed vs. what was true

For example, about the time I was born, a computer scientist supposedly said he could not imagine why we would ever need more than about four computers on the entire planet. Others said flying to the moon was impossible–and even if it were, it would not happen in my lifetime. And cancer? We had no answers and never would.

We’ve discovered a lot of things…

Of course all those statements and ideas proved entirely untrue. I have a computer in my phone that is far more powerful than the best computer we had in 1952–and seemingly everyone has one. Cars all have computers in them. Every writer I know uses one nearly every day. Every teacher, too. No scientist could get through the day without one.

Moonshots

We’ve been to the moon and sent two probes beyond the edge of our solar system into interstellar space. We’ve discovered worlds spinning around distant suns and begun to perceive the structure of the universe.

…four computers on the entire planet.

And then there’s cancer. I hear several times a month from people that cancer research is the biggest boondoggle in history. “We’ve spent all this money and we still have no cure? The drug companies and the researchers are covering up the cure so they can make more money.”

Before there were cures

In 1952, childhood cancer was nearly an absolute death sentence. Childhood leukemia absolutely was. Breast cancer? Lung cancer? Get your affairs in order. And many people still think this is the case.

And then there’s cancer.

Sidney Farber wasn’t an oncologist. He was a pathologist at Children’s Hospital in Boston. He had the corpses of all these children arriving on his slab on a seemingly daily basis. It drove him to act. He’d go to parents of terminally ill children and get them to let him try chemicals that killed cancer cells in a test tube. Most did no good. But he kept trying.

The changes we don’t see

Today, 90 percent of children diagnosed with leukemia live, many into adulthood. We have a treatment in trials that seems to work for many childhood glioblastoma cases. I know a large group of women, including my younger sister, who are 20-year or more breast cancer survivors. We have cures for lots of forms of cancer–just not all of them yet. Those cures don’t work on every kind of cancer–don’t work on every cancer they are designed to take down.

Sydney Farber wasn’t an oncologist.

Once or twice a year I get to spend time with physicians and researchers working at the cutting edge of cancer. Sometimes, the news is almost too good to be believed–what’s happening with some cancers and immunotherapy leaves me speechless. Sometimes, the news is worse than I can begin to imagine. Every study, every experiment, every trial, adds a new piece to the puzzle, brings a new piece of evidence to the case. Sometimes those things open new lines of investigation. Sometimes they end up being dead ends.

Learning from failure

But we don’t know where something will lead until we try it. Early rockets blew up on take-off more often than people think who were not there to see it. But every failure led somewhere–taught us something we needed to know. People forget that some of our early Mars missions ended in complete failure. Today, we have rovers traveling that planet finding all kinds of interesting things.

Those cures don’t work on every kind of cancer…

Cancer research works the same way. Farber didn’t give up when his first patients died. He didn’t give up when the second group of patients died–or the third or the fourth… Success grows from failure more often than from immediate success.

What we now know

I keep telling myself that. It’s not helping very much this month. Nine years ago, my wife was dying from a cancer her doctor had never heard of, that few oncologists ever expected to see in their entire careers.

…every failure led somewhere…

Today, we know NET cancer stands second only to colon cancer in terms of patients in treatment for GI cancers. We know it stands as the most common of the rare cancers that make up about 30 percent of all human cancers. We know it stands on the verge of crossing out of the legal definition of a rare disease.

Nothing changed when much changed

But medical schools still don’t talk about it much. It appears on no national medical exam. Virtually no primary care physician or nurse practitioner knows it exists if they haven’t encountered a patient with it–a patient who likely heard the same words Jane did when she was diagnosed: “I’ve never heard of this kind of cancer before.”

I keep telling myself that.

I’ve worked at changing that for close to nine years now. Some things have certainly changed during that time. We have online support groups for patients; two organizations have put out books on the subject to help patients become more knowledgeable about the disease and better advocates for themselves; nationally, we’re raising–and spending– more than 10 times as much money for research as we were in 2010. I don’t pretend I’ve had a lot to do with any of that–much of it I’ve had absolutely no involvement in.

The other awareness

But awareness outside the NET cancer community has not changed at all. Many of us have shouted from the rooftops. Primary care physicians have not heard us. Nurse practitioners have not heard us. Medical curriculum groups have not heard us. The general public has not heard us.

But medical schools still don’t talk about it much…

Until that changes people will continue to be diagnosed with advanced disease we have no way of curing. We’ll only be able to ease their suffering some of the time when the drugs and treatments we have work. We may buy them some time with a better quality of life than they might otherwise have.

Changing ignorance

And there will continue to be patients who are never diagnosed; who will die without even the treatments we have that might help them with their symptoms, might get them to a graduation or a wedding or the birth of a grandchild.

Many of us have shouted from the rooftops.

We need to get those medical schools and nursing schools and medical curriculum designers to listen. They need to know the universe of neuroendocrine cancer exists–that what they think they know about the size of the problem is badly out-of-date–and dangerously wrong.

The walk in the woods calmed my mind but brought me no answers. I still don’t know how to do what needs doing. But I’ll keep trying. I hope you will, too.

Neuroendocrine cancers: problems and dilemmas

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Goals, Marketing NETs, NET Cancer Awareness Day/Month
The NETwalkers Alliance raises money through the Boston Marathon Jimmy Fund Walk for neuroendocrine cancer research. Morgan (left) has walked the entire route the last two years with Walking with Jane founder Harry Proudfoot (right) who lost his wife to NET cancer in 2010. Morgan was the last teacher Jane mentored and has been involved with Walking with Jane from the start.
The NETwalkers Alliance raises money through the Boston Marathon Jimmy Fund Walk for neuroendocrine cancer research. Morgan (left) has walked the entire route the last two years with Walking with Jane founder Harry Proudfoot (right) who lost his wife to NET cancer in 2010. Morgan was the last teacher Jane mentored and has been involved with Walking with Jane from the start.

Neuroendocrine cells

All neuroendocrine cancers come from neuroendocrine cells. Neuroendocrine cells are the way the nervous system and the endocrine system communicate and create the hormones and peptides our bodies need to do everything from build muscle to digest food to run away or stand and fight. They are involved in everything our bodies do to survive and thrive.

Lives depend on that attention and awareness.

Neuroendocrine cells are found just about everywhere in the body. As a result, neuroendocrine cancers can appear almost everywhere in the body. On the surface, at least, that makes them different from the ways we think about most cancers. When a cancer occurs in the lungs, we call it lung cancer. When a cancer happens in the pancreas, we call it pancreatic cancer. When we get cancer in the liver, we call it liver cancer.

Matters of body geography

But a neuroendocrine cancer in the lung, pancreas, liver–or anywhere else–is often a very different disease from the “normal” cancers that occur in those organs. They may have very different symptoms. They can’t be discovered using the same tests and scans. They frequently don’t respond to the same chemo and radiation treatments.

…neuroendocrine cancers can appear almost everywhere…

And some, but not all, produce hormones in significant enough quantities to have an impact on body chemistry. Those changes can speed up digestion, slow respiration, speed up heart rate, raise or lower blood pressure, change moods–essentially affect anything a hormone or peptide can affect.

Testing for neuroendocrine

Tests for hormone levels can be difficult to administer, as well as expensive. Until recently, for example, testing for serotonin, a hormone commonly produced by neuroendocrine tumors, involved a patient collecting all of their urine for 24 hours. That urine would then be sent to a lab to be individually analyzed for chemicals related to the breakdown of serotonin. Based on those levels, the lab would then extrapolate how much serotonin was being produced and whether or not that fell into normal ranges.

…an impact on body chemistry.

And no doctor is likely to order tests without better cause than a fishing expedition based on a group of vague symptoms that may or may not be explained better by something else.

More complications

Another complication in diagnosing and treating a neuroendocrine cancer is the very number of possible hormones involved and their impact on an individual patient’s symptoms. High serotonin levels produce very different symptoms from high adrenaline levels. And each may require a different treatment regimen.

Tests…can be difficult to administer…

As if that were not bad enough, neuroendocrine cancers come in at least two very different structural types. NET cancers are low grade, well-differentiated tumors that often grow slowly. That slow growth may be part of the reason traditional radiation and chemo therapies don’t work well on them.

The carcinoma difference

Neuroendocrine carcinomas, on the other hand, can be very aggressive. They are high grade, poorly differentiated structures. Their aggressive nature may make them more open to more traditional-looking therapies. But the success rate is not particularly high.

As if that were not bad enough…

In truth, for both types of neuroendocrine cancer, the only curative therapy we have is surgery. And that only works when the cancers are discovered quite early. Otherwise, our treatments can ease symptoms and/or slow the advance of the disease.

Researching neuroendocrine

Neither neuroendocrine cancer form is well understood. And we simply lack the funds to do enough fundamental research into their biology to create the knowledge that could lead to either early detection or a cure.

…the only curative therapy…

A large chunk of that kind of research funding is created by the NET Research Foundation (NETRF), though many NET cancer centers do raise and spend significant amounts to do that work–amounts that may, together, equal what NETRF supplies. The Neuroendocrine and Carcinoid Tumors Program at the Dana-Farber Cancer Institute, for example, raises over $1 million each year to fund research.

Barriers to diagnosis

Two significant barriers exist in the fight against neuroendocrine cancer. The first is awareness among primary care physicians and nurse practitioners about the disease. The Carcinoid Cancer Foundation uses the phrase, “If you don’t suspect it, you can’t detect it” to underline why physician knowledge and awareness matter. I would go one step further and suggest that doctors can’t suspect what they’ve never heard of. In too many cases, too many doctors and nurse practitioners have never heard of the disease.

…much research funding is created by NETRF

The second barrier is public awareness. Neuroendocrine cancer is the second most prevalent GI cancer in the United States. Only colon cancer has more diagnosed patients. Yet few people outside the neuroendocrine cancer community and their immediate families have ever heard of it.

Raising Awareness

I talk with doctors and nurses in a variety of settings. Even many oncologists have never heard of neuroendocrine cancer. I speak in public settings with some frequency. I am too often greeted by incredulity that such a cancer can have flown so long under the radar.

Two significant barriers exist…

Neuroendocrine cancers need a greater level of awareness and attention from both doctors and the general public. Lives depend on that attention and awareness. The #30NETfactsin30days Campaign is an effort to create that greater awareness.

My last arrow? I hate this dragon

awareness, Goals, Marketing NETs, NET Cancer Awareness Day/Month, Personal statement
I lost Jane nearly nine years ago. I'm still fighting her cancer--but I'm nearly out of arrows.
I lost Jane nearly nine years ago. I’m still fighting her cancer–but I’m down to my last arrow.

The arrow I have

I have to admit, I’m worried. In two days we launch a social media campaign on Facebook and Twitter aimed at PCPs, NPs, medical schools and the general public about NET cancer. It’s the last arrow I have in my quiver and I’m far from sure it’s enough to make this dragon even wince. But it’s the arrow I have, so…

I made a promise.

This campaign has to go viral in ways nothing I’ve ever posted–or written anywhere on anything–has done. It has to reach communities I’ve never figured out how to reach effectively. We’ve worked on it for months–and I’m still tinkering with it today–will likely still be doing so tomorrow.

Hoping for an avalanche

Earlier this year, I described what I’ve spent the last nearly nine years doing as standing on top of a mountain throwing pebbles, hoping to start an avalanche that would wake people up to the reality of neuroendocrine cancers.

It’s the last arrow…

I’ve watched in horror as the numbers of diagnoses and the number of patients has climbed year after year. We stand at the edge of NET cancer losing its rare disease status, yet it remains a disease neither medical professionals nor the public has any real awareness of.

Time’s arrow

It’s been a decade since Jane’s H1N1 flu battle opened the gate to her NET cancer’s closing act. It’s been nine years, two months, and 14 days since we knew what she had. We’re barely seven weeks from the ninth anniversary of her death.

…standing on top of a mountain throwing pebbles…

In that time, I’ve raised some money, inspired some people–thrown lots of pebbles–but NET cancer remains largely unknown and largely underfunded. And I’m down to that last arrow–that last pebble. And I’m afraid it isn’t going to be enough.

Death and failure

I’ve lost track of how many patients I’ve known have died this year. There have been too many. I know more will die before this year ends. Each one tears at my soul–each one reminds me we’ve failed–that I’ve failed to honor the promises I made myself when Jane died: to raise awareness so no one hears what we heard the day her doctor told us what she had–“I’ve never heard of this cancer before;” to create the money that would help to find a cure; to find the money that would make an early diagnosis common rather than an exception.

…down to that last arrow…

I thought all those things would be easy. How could anyone who heard Jane’s story not be moved to help? All I needed to do was write and speak and advocate. These were things I knew how to do–have done all my life.

Competing voices

And I failed. There are hundreds–maybe thousands of diseases our there with the same trouble. No one knows about them except the people who have them. No one cares about them except for those affected by them. A thousand things clamor for attention every day. No one has time for the things that don’t have a direct impact on their lives or the lives of their families.

There have been too many.

Starting Friday, we will try again. Over the course of 30 days, we’ll post our 30 facts and hope they get reposted and read and will do some good. I have a plan for a follow-up project in December and January if this even sort-of works.

And then?

And if it doesn’t…

If it doesn’t…I guess I’ll try to make a new arrow or look around for some loose pebbles somewhere.

…we will try again.

I made a promise.

–Harry Proudfoot,

President, Walking with Jane

Goals for 2019 for Walking with Jane

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Goals, NETwalkers Alliance, Pan Mass Challenge, Relay for Life

I finished my sixth full Marathon Walk in 2018--and my eighth year on the course. This year, I had company on the full course, including Morgan Bozarth and Dan and Julia Hurley. One of my personal goals is to get at least one more full distance Walk in this year.
I finished my sixth full Marathon Walk in 2018–and my eighth year on the course. This year, I had company on the full course, including Morgan Bozarth and Dan and Julia Hurley. One of my personal goals is to get at least one more full distance Walk in this year.

Thinking about goals

I sit down to review the goals for Walking with Jane and draft new ones every January as part of the planning process. Doing so requires me to look not only at Walking with Jane as an organization but also requires I look at what the other groups involved in the fight against NET cancer are doing.

We need to spread the knowledge…

The reason for that is I see no reason to keep doing something others are doing better. We have limited resources. I try to work on the things that seem to me to have too few resources aimed at them.

Looking around

This year, I decided to zero everything out and start from scratch. I asked myself, “What do we do well—especially better than anyone else? What do we do poorly—or that some other group is doing so well and so broadly that we can step back from it? What are the holes that need to be filled regionally, nationally and internationally? What would I do if I were coming to this work today?”

We have limited resources.

Truth be told, while NET cancer has come a great distance since Jane’s death in 2010, a great deal remains to be done. Yes, patient awareness and support has come a great distance. The Carcinoid Cancer Foundation links patients to doctors and information about the disease at a very high level. Several groups sponsor both regional and national conferences aimed at patients and caregivers that are invaluable resources.

What do we do well?

Research funding has also improved markedly over that period as well. Thanks to generous donations, the NET Research Foundation has begun to establish a broad base of researchers around the world. Globally, there is more research going on than ever before—research we can hope will one day result in cures for NET cancer patients everywhere. In the meantime, that research is turning up ways to improve patient quality of life—as well as lengthening their lives.

Holes to fill

But too many primary care physicians remain ignorant about the disease. Even those who have heard of it often rely on vague memories of the past and know almost nothing about the latest research. It’s not that the resources to educate them don’t exist—it’s that they don’t know where to look.

What do we do poorly?

Nor does the general public have any name recognition for the most part, despite NET cancer being the second most common form of gastrointestinal cancer in the US.

Funding matters

We rely heavily on big donors for both awareness and research funding. Sometimes that money comes with strings attached, pushing researchers in particular directions. That’s not necessarily a bad thing. Drug companies only step up when they see science that is working—and we need to fund translational research that brings the results of basic science to patients who need treatments.

…too many primary care physicians remain ignorant…

But basic research rarely attracts those kinds of donors. We need to develop ways to consistently reach the $25-$1000 donors who together can make an important difference. Walking with Jane has helped spearhead efforts at the Dana-Farber Cancer Institute in that direction. Last year, those efforts created about $700,000—the lion’s share through Boston Marathon Jimmy Fund Walk and Pan Mass Challenge teams.

Lifting more boats

That was all part of a larger campaign to attract both large and small donors to the NET cancer program at DFCI. Over three years, 3-in-3: The Campaign to Cure NET Cancer, raised a total of over $3.6 million.

We need to develop ways to consistently reach the $25-$1000 donors…

We need to spread the knowledge of how to do that to NET cancer centers everywhere. Part of our goals this year is a major push to do just that.

The 2019 Goals

Our 2019 goals are broken down into three areas: Fundraising, Awareness, and Infrastructure. Some of the goals appear in all three areas.

Fundraising Goals

  1. Raise $900,000 in small donations for the Program in NET Cancer at DFCI
    1. Retain and Expand the #curenetcancernow Boston Marathon Jimmy Fund Walk group
      1. Set a group goal of $200,000 and 300 walkers
      2. Set a NETwalkers Alliance team goal of $75,000 and 30 walkers
      3. Set a personal Walk goal of $18,000
    2. Expand the number of riders for NET Cancer of the Pan Mass Challenge
      1. Set a total Ride goal of $700,000
      2. Help the Heidi’s Heroes team reach $250,000
      3. Set a personal ride goal of $12,000
    3. Help NET Walk and PMC teams develop effective fundraising activities
  2. Support efforts by the development office at DFCI to attract and retain large donors
  3. Raise an additional $20,000 to support the Primary Care Physicians NET Cancer Awareness Initiative (Laura Maguire Hoke Fund for NET Cancer Awareness)
  4. Raise $4000 for the Jane Dybowski Scholarship Fund
  5. Help other NET cancer centers develop effective small fundraising events for Walks, Rides, etc.
  6. Write and recruit fundraising articles for the fundraising section of the website and for the Walking with Jane Fundraising group

Awareness Goals

  1. Redesign website in support of the new vision and purposes
  2. Create both and materials for primary care physician conferences
  3. Book and attend primary care physician conferences
  4. Create press releases and pamphlets as needed
  5. Create PSAs as needed
  6. Do 2018 form 990 and post—with past years—to new website
  7.  Create a team for Relay for Life

Infrastructure Goals

  1. Complete Walking with Jane office
  2. Update computer system and printer as needed
  3. Design banners for craft fairs and PCP conference booth
  4. Redesign and rewrite website
  5. Maintain and expand social media connections
    1. SnapChat
    2. Others
  6. Create detailed monthly plans for all of the above
  7. Implement plans on a daily basis

The changing NET cancer landscape

Fundraising, Goals, NETwalkers Alliance, Pan Mass Challenge

I wish my personal landscape involved more time with my hummingbirds and less time trying to help unravel NET cancer. But the good of the many outweighs the needs of the one, as Spock would say.
I wish my personal landscape involved more time with my hummingbirds and less time trying to help unravel NET cancer. But the good of the many outweighs the needs of the one, as Spock would say.

Changing landscape of NET cancer

The landscape of NET cancer has changed enormously over the last eight years. We had no money for research worth talking about. Too many patients and caregivers had few support systems beyond their immediate friends. Online support groups were mostly small and hard to find. People in the US had to fly to Europe to get the single most effective treatment available.

I can already see the broad outlines forming…

I’ve had little to do with any of those changes beyond wishing for them. Yes, I’ve helped raise or inspire about $4 million in funding for research in that time. I’ve offered some solace and knowledge to a small number of patients and inspired a couple of people to write about their experiences. I’ve tried to lay some groundwork where I could. But what I’ve done and what I wanted to do remain two very different things.

Where I’ve been

Over the last ten months, I’ve done a lot of thinking about what I’m doing—a lot of thinking about what the NET cancer community has been doing.

I’ve tried to lay some groundwork…

Personally, I’m in the last four months of chairing Dana-Farber’s 3-in-3: The Campaign to Cure NET Cancer. The goal of that campaign—$3 million in three years—is within sight–despite what the giving page says. We’ve had big donations and small donations and everything in between. We have multiple Boston Marathon Jimmy Fund Walk teams, a substantial Pan Mass Challenge team and a number of independent riders whose efforts support that cause, and a number of different named funds, all of which support a substantial research program at the Dana-Farber Cancer Institute.

Credit where credit is due

Honestly, though, the bulk of that effort has not fallen on me. I’ve chaired the monthly progress meetings, made some suggestions, led our NETwalkers Alliance team, and given the occasional speech, But the bulk of the effort has fallen on Hillary Repucci and her team in the Jimmy Fund office.

I’ve done a lot of thinking about what I’m doing…

Still, that effort has taken something out of me. I’ve written less and less for the walkingwithjane.org website, written very little on the grief websites I’m part of, written very little on the various NET cancer support websites. My personal writing has entirely withered on the vine—as has much of my personal life. For eight years, NET cancer has dominated my waking hours—and too many of my sleeping hours as well.

Fighting through the emotions

It has become harder and harder to do more than read the posts in the NET cancer support groups—emotionally harder and harder to do even that. Every patient’s story reminds me of Jane’s, reminds me that we still don’t have a cure, reminds me that every time I’ve seen something that looked promising it has fallen well short of that promise.

…the bulk of that effort has not fallen on me.

Two weeks ago, I lost another person, who’d become a friend, to this vile disease. Like Jane—like too many others—she was diagnosed far too late—died far too young. Each patient’s story strafes my soul; each death reminds me we have not yet done enough. For all that things are better than they were—they are not yet what any sane person would call good.

The unchanged landscape

Eight years ago next month, Jane and I sat in her primary care physician’s office waiting to learn the results of her biopsy. Jane had a blood clot in her shoulder. As a result, we were getting the results of the test a couple of days early. She would spend that night in the hospital. It would be only the second time in almost 21 years of marriage that we spent the night apart. It would not be the last.

Every patient’s story reminds me of Jane’s…

“It’s cancer,” her doctor said. “I don’t know how to tell you this, but it’s a cancer I’ve never heard of before.”

The changing reality

Too many people still hear similar words when they learn they have NET cancer. That piece of the landscape hasn’t changed. Too many patients still have to educate their oncologists about the current treatments for the disease. That piece of the landscape hasn’t changed enough either, for all that it is marginally better than it was eight years ago.

‘…I’ve never heard of before.’

NET cancer is now the second largest form of gastrointestinal cancer in the US in terms of the number of diagnosed patients living with the disease. We now diagnose more than 20,000 new cases every year. Nearly 200,000 people are knowingly living with the disease in this country as I write this. Yet it remains a disease the vast majority of Americans have never heard of. That piece of the landscape hasn’t changed.
And how many people are out there suffering—as Jane did for years—with NET cancer who will never know they had it—whose relatives will be told they died of something else? Too many.

What I want–and why I don’t

I want to stop. I want to sit on my deck and watch the hummingbirds, work on my garden paths, plant flower beds, sit in Jane’s memorial garden and watch the baby bunnies nibble the leaves on the perennials. I want to bake cookies and breads, to write a novel and some poetry, to play chess and learn to knit or sail.

Too many people still hear similar words…

But Pam’s death haunts me; Kevin’s death haunts me; Laura’s death haunts me; Jane’s death haunts me; the lives of all the people I know who live with what each of them went through drive me away from my birds and bunnies, my flowers, paths and trees—drive me away from my kitchen, away from my novels and poems.

Carving out the future landscape

Periodically, I take some time away from everything. Last week was supposed to be one of those times. It didn’t happen. The everyday problems of life intervened. It’s not clear when I’ll get a few days away, but I have a bit of a busman’s holiday this weekend between the Landers’ Golf Tournament and the PMC. I have no responsibilities beyond showing up to hit a few golf balls, say a few words, and ride a bike for a few hours. I’ll try to get away for a few days after Labor Day and a few more after Columbus Day.

Jane’s death haunts me…

But come mid-December, I’m taking an extended break from day-to-day fundraising and day-to-day NET cancer issues. Part of that time, I’ll spend relaxing and trying not to think about NET cancer. Some of that time, I’ll spend mourning the losses of the last eight years. And some of that time I’ll spend thinking about how to make the next moves in this long war I married into. I can already see the broad outlines forming at the back of my mind. I’ll start working on those in the coming weeks, even as this chapter draws closer to an end.
—Harry Proudfoot
Chairman, Walking with Jane

Redesign time: What are your thoughts?

awareness, Fundraising, Goals

The initial era of Walking with Jane is drawing to a close. As we head into the next era, we need to rethink what we are doing--and redesign the website in accord with the new role and the new goals of the organization.
The initial era of Walking with Jane is drawing to a close. As we head into the next era, we need to rethink what we are doing–and redesign the website in accord with the new role and the new goals of the organization.

Redesign long overdue

Just about 6.5 years ago we started the design of walkingwithjane.org. At the time, it was a state-of-the-art design. We tinkered with it over the first year or so, but content reigned over all else in terms of effort. We had a particular set of goals in mind, and designed accordingly. We haven’t done a redesign since.

…I’d like your input…

Last year I was on the periphery of the design of the 3-in-3 campaign website. The rough draft blew my mind. It drew on everything that has evolved over the last several years. It was the website I hope we would have designed today if we started from scratch.

Redesign needs to reflect changes

Except, it’s not. There are features in it I like, but it was designed for a very different purpose than this one was. Nor is this website designed for the new focus I have in mind for the next three years of Walking with Jane. Times have changed. Our goals have changed. This website must change to reflect those changes.

The rough draft blew my mind.

In 2011, I felt we needed to be all things to all people. It proved too great an undertaking for one person to maintain. Others have come on the scene who do what I wanted to do, only better. The Carcinoid Cancer Foundation provides better resources for patients and caregivers than anything I can provide. We now have dozens of support groups. We have other sites and individuals gifted at translating doc-speak into human terms.

Redesign for general audience

But we are still weak in two areas: fundraising and general awareness. NET cancer research funding has shown steady improvement since 2010, but still lags far behind diseases with fewer patients at risk. NET cancer has become the second most prevalent form of gastrointestinal cancer, trailing only colon cancer. Within three years, we can expect it to reach levels that will end its legal status as a rare disease.

Our goals have changed.

Walk down the street and ask 10 people what cystic fibrosis, pancreatic cancer, or MS are and people will know them. Ask those same 10 about NET cancer–more prevalent than any of them–and you will meet blank stares. If doctors can’t detect what they don’t suspect, can’t suspect what they’ve never heard of, we cannot expect people to donate to research a disease they don’t even know the name of. Nor can they suggest to their doctors that their symptoms may add up to something more deadly than a little intestinal discomfort.

Redesign for medical folk, patients

We need to continue to educate primary care doctors, physician assistants, nurses and specialists likely to encounter NET cancer, as well. I talk with every doctor and nurse I encounter. Rarely have any of them even heard of NET cancer even under the term carcinoid. Those who do, rarely know anything beyond what they learned years before in a passing mention in school.

…more deadly than a little intestinal discomfort. 

And we need to continue to help patients understand the various treatment options they do have through the personal stories of patients who have experienced things like PRRT, telotristat, and liver embolization, to name just three. As the number of treatments grows, patient awareness of those treatments needs to grow as well.

Redesign input requested

I have some ideas about what a redesigned walkingwithjane.org looks like. I’m talking with some web designers over the next few days. But I’d like your input as well, both in terms of what the site looks like and what the content needs to include. What can’t you find that you need to find?

…we need to continue to help patients…

And I’d also like you to think about sites we need to link to that are doing good work. I don’t see a point to duplicating what others are doing well or have the resources to do better than I ever will. For example, if you want to find a doctor, you can’t do better than the Carcinoid Cancer Foundation’s listings.

You can post your thoughts in the comments section below or contact us at walkingwithjane@gmail.com.

Time to change direction and focus

awareness, Goals, Marketing NETs

I restarted this ivy heart shortly after Jane's death. The original plant died while Jane was in the hospital. It sprouted a bit that spring. The change since then is remarkable.
I restarted this ivy heart shortly after Jane’s death. The original plant died while Jane was in the hospital. It sprouted a bit that spring. The change since then is remarkable.

A year of change

My friend John died July 1. August 8, I had minor surgery to remove a basal cell skin cancer from my nose. I fought off a cold in September, another in October, the flu in early November and an intestinal issue last week. This weekend marks the seventh anniversary of Jane’s death. My mind, my body, and my soul are tired. Something needs to change.

I need a real break…

Change has very much been in my mind much of the last year. Too much of what I am doing seems pointless. Much of what isn’t pointless, others do far better than I can do. I’ve always believed one should let other people take over when they’ve proven they can do the job better. In those areas, it’s time I did that.

Change over seven years

We have literally dozens of online and offline support groups for NET cancer. Those groups spread the latest NET cancer treatment information to patients and their lay caregivers quickly and efficiently. Ronny Allen and others have taken on the task of putting the latest knowledge into lay terms. Ronny’s site dwarfs this one in every way that matters. It’s time for me to move on from that piece.

Something needs to change.

The Carcinoid Cancer Foundation has set up a place for patients to tell their stories on its website. Increasingly, patient stories make the local print and broadcast media across the US–and across the world. There is more to do there, but the job is getting done better than I can do it. It’s time for me to move on from that, too, except where patient experiences with specific treatments are concerned.

The change grief creates

When I began this, Jane’s story needed to be told. I’ve told it. I’ve told it from every meaningful angle–likely in more intimate detail than anyone needed or wanted to hear. I have also told the story of my grief to the NET cancer community in far greater detail than most would want to hear.

It’s time for me to move on from that piece.

That grief has driven me to a kind of madness. I live too much in a form of solitary confinement. I spend too many days and nights alone with little more than a keyboard and disembodied voices for company. Even when I go out, I am too aware of being alone in a crowd–even when I am out with friends.

Where Walking with Jane began

When I began this work seven years ago, I saw three things that needed addressing: funding, medical awareness, and public awareness. While we have seen improvement over the last seven years, those remain the three intractable problems that stymy our efforts. We can’t fund research without money. We can’t get better diagnostics without greater medical awareness. We can’t get money in the quantities we need without greater public awareness.

That grief has driven me to a kind of madness.

At some point, I lost track of those three things. When patients asked questions, I got caught up in answering those questions. When patients needed emotional support, I did what I could to answer that need. When caregivers needed an understanding ear to listen to them, I tried to do that.

Unexpected change

I forgot I am one human being. In trying to be all things to all people I could forget the burdens I carried for a time. And I could ignore the larger issues I set out to find answers to that seemed beyond my powers to achieve. At least I could feel I was doing some immediate good.

…funding, medical awareness, and public awareness.

My ego got involved, too. I wrote, day-after-day, for years, for an audience of 25-30 regular readers. They were all people I already knew. I needed to attract a general audience that had not heard of NET cancer before who would be moved to do something by Jane’s story. And I couldn’t do it–I couldn’t create that audience.

Change in audience

Without the patient and caregiver audience, I’m not sure what I would have done. One can only write in a relative vacuum for so long before doubt climbs on board. I have no doubt telling Jane’s story has helped many patients. I have no doubt those stories will continue to prove helpful. But telling that story has done little to reach the outside world with the NET cancer story.

My ego got involved, too.

This website has largely lain dormant over the last year. Some of that had to do with helping care for my friend John. Some of it has had to do with my own health issues–both physical and mental. But a big chunk also has had to do with my own frustration. It seems, sometimes, that everything I put my hand to fails–but the moment someone else picks up that same task, they succeed.

Moments of doubt

And I can’t convince myself that somehow I’ve inspired them. People say that to me with some frequency but I don’t see it. They see a role that needs filling and they fill it. Sometimes, after they are well started, they see something I did or am doing. But the thing that started them had nothing to do with me–just with the need I failed to fill effectively enough to make the difference they make.

This website has largely lain dormant…

The last 7.5 years have been the most difficult of my life. They began with Jane’s NET cancer diagnosis and her doctor’s confession that he knew nothing about the disease. They’ve included rising and dashed hopes, multiple deaths, dozens of projects started but never finished, and more mental and spiritual anguish than I can describe. We’ve seen much change in the NET cancer universe over that time–but not nearly enough. We still have no cure.

The battle continues

I don’t walk away from a fight just because the opponent refuses to go down easily. I don’t give up over my own failures–or anyone else’s–either. But sometimes one needs to consider a change in tactics.

…the need I failed to fill…

The focus of Walking with Jane will remain NET cancer. But a return to first principles–and first goals–seems in order. We need to raise public awareness of the disease for two reasons.

Public awareness focus

First, we know there remain many people out there who have NET cancer and don’t know they have it. They suffer the various vague symptoms and travel from doctor to doctor looking for answers–answers the doctors don’t have because they can’t suspect what they’ve never heard of.

I don’t walk away from a fight…

Second, only by broadening public awareness can we generate the funds we need for the basic research that will open the door to real progress on treatments and potential cures. We can’t continue to rely almost exclusively on funding from donations from wealthier patients and their families for the research we must have. A broader donor base that includes both patients and non-patients will generate more funding than either group alone.

Physician awareness must change

But public awareness is not enough. We also need far better physician awareness than we have. The NET cancer landscape has changed substantially in recent years–but primary care doctors remain largely unaware of the existence of the disease, let alone the changes in diagnostics and treatments.

A broader donor base…

Virtually every day a NET cancer forum patient reports conversations too similar to what Jane heard on the day of her diagnosis. Worse, many doctors who do have knowledge of the disease work from a knowledge-base that is a decade old or more.  That, too, needs to change.

Revamping our approach

Starting almost immediately, then, Walking with Jane will begin reinventing itself. We’ll focus on general physician and public awareness in the coming year, as well as fundraising. We’ll continue trying to support patients with first-person experiences with new treatments. But I’ll write far less about Jane and spend significantly less time monitoring patient support groups–or writing things aimed at those groups, myself.

…public awareness is not enough.

In mid-January, we’ll undertake the first major redesign of this website since its creation in 2011. We’ll create separate tracks for patients, primary care doctors, and the general public. We’ll do more to link patients to other sites that do a better job of addressing their concerns than we can do here. We’ll use our Facebook page in different ways than we do now.

And, in the year ahead, we’ll do more general information leafletting in public spaces, as well as other awareness focussed events for both the general public and physicians.

My own needs

But I’m tired. John’s last days took a lot out of me. Memories of Jane’s last days are tearing me up inside. I hurt physically, mentally, emotionally, and spiritually. I need a real break–or at least to slow down. I have a craft fair I’m committed to and a Facebook Awareness Campaign that runs through the end of December. The awareness campaign is largely already designed–most of that is simple posting and sharing.

Starting almost immediately…

So after December 17, I’m taking some time off. For about a month, with one exception, I’m going to try not to think about NET cancer. I may take a trip, do some writing, take some pictures…or I may just work on some house projects I keep thinking about doing but never get to. A few weeks without structure might make a good change for a man who plans just about everything.

Money remains a central NET cancer problem

awareness, Fundraising, Goals, NET Cancer Awareness Day/Month

We raised just over $5000 last month with a dinner fundraiser. That's not a lot of money compared to what we ultimately need--but with the slim funding we have, every dollar counts.
We raised just over $5000 last month with a dinner fundraiser. That’s not a lot of money compared to what we ultimately need–but with the slim funding we have, every dollar counts.

Money remains too scarce in 2017

Money was a problem in 2010. The amount researchers had to spend amounted to less than we spent on Jane’s treatment in the four months from her diagnosis to her death. Jane telling her doctors to study her the best they could, in some ways, doubled the research money for the year.

Grants run out and have to be replaced.

Money remains a central problem for NET cancer seven years later. Yes, we have 10 times as much research money now as we did then. Yes, we’ve seen significant increases in money for clinical trials from pharmaceutical companies and other sources. But we need to find more.

Funding for research

We still spend far less on NET cancer than we need to. The disease is complicated in ways no one saw coming. Just growing tumors in test tubes has proven insanely difficult. Mouse models have proven largely pointless. The tumors often grow so slowly the mouse dies before we can get useful information from it. The DNA shows no major attackable weaknesses.

Money remains a central problem…

Our efforts seemingly remain largely limited to finding ways to slow the disease and ease patient symptoms. Yes, we’ve found better scanning techniques. Yes, we have a trial of one variety of immunotherapy going on at this moment and another variety in the works. But much of the last seven years has remained devoid of curative ideas. This is not to belittle the substantial efforts to find ways to alleviate patients’ symptoms. Quality of life very much matters–especially in the absence of a cure. But we should not have to choose between one or the other.

Funding for awareness

The lack of money has also hampered our efforts to educate primary care physicians about the NET cancer. Our first priority has been finding ways to help patients who know they have the disease. But we have no real idea how many additional cases we are missing because of simple ignorance. As I’ve written before, not only can we not detect what we don’t suspect, but doctors can’t suspect what they have not heard about.

The disease is complicated…

And too many primary care doctors have not heard of NET cancer. NET cancer patients outnumber brain cancer patients in the US by a significant number. Every doctor in America knows what a brain cancer is. Too many don’t know what NET cancer is. And too many who do know so little about the disease that they say things like, “You have a good cancer too have.”

The next round

We can’t deny that NET cancer research is much better funded today than it was even seven years ago. But we still have less funding than what amounts to a rounding error on many other forms of cancer. We need sufficient funding to mount and maintain a more serious basic research effort than we have today. We need sufficient funds to continue to find and test new treatments and new diagnostic tools. And we need sufficient funds to ensure that every primary care doctor comes to know NET cancer for the menace it is.

…doctors can’t suspect what they have not heard about.

So for all the improvements in funding we have seen in recent years, we have to do more. Grants run out and have to be replaced. Much research that we need to do goes unfunded because we can’t afford to fund everything that needs funding. And awareness campaigns for both doctors and the general public need not just planning, but the resources to carry them forward. For all the problems we have solved in the NET cancer community, this one remains very much on my mind.

 

 

Landscape has not changed enough

awareness, Goals, NET Cancer Awareness Day/Month

Changing the landscape of NET cancer awareness among the general public is one reason I do craft fairs. Reaching out to primary care doctors has proven a more difficult task. Wow need to reach them.
Changing the landscape of NET cancer awareness among the general public is one reason I do craft fairs. Reaching out to primary care doctors has proven a more difficult task. We need to reach them.

Brighter landscape in many areas

The NET cancer landscape has changed dramatically since 2010, as I wrote earlier this month. Patients who came to this disease before that year no doubt have seen even larger changes. But newer patients may well look back seven years from now and see today as just as bleak as we saw the date of our own or our loved ones diagnosis.

That still needs to change…

To a large extent, even the name of the disease has undergone significant change in recent years. When Jane was diagnosed, everyone seemed to talk about it as carcinoid cancer. Carcinoid meant “cancer-like” and many doctors took that literally. They called it a good cancer too have. They did not mean that cruelly. They’d never really seen it. They didn’t understand it.

PCP landscape still dark

Too many primary care doctors still see it that way. Too few doctors remember it from medical school. Many did not hear of it even in passing then. And even those who have heard of it too often think of it as a form of cancer so rare there is no point to testing for it. Worse, the idea of it as a “good” form of cancer to have persists.

They did not mean that cruelly.

People say basal cell skin cancer is a good cancer to get. I used to think so, too. My dermatologist freezes some off my face every six months. A decade ago, I had Mohs Surgery to remove a more troublesome spot. I went back to work the next day. Basal cell skin cancer isn’t generally life-threatening. It’s easy to cure. But in early August I had another round of Mohs Surgery. It’s mid-November and I’m still recovering.

A patient’s daily landscape

There is no “good” form of cancer. Not all cancers end in death, but every cancer changes life as we know it. My skin cancer forced me to face a variety of issues–gave me a small taste of a future I don’t like. For weeks, everything I did was a struggle. The fog of mourning deepened in enforced inactivity. I’ll be months regaining the endurance and strength I’ve lost.

Too many primary care doctors still see it that way.

And this is a picnic compared to what Jane went through–to what every NET cancer patient goes through. Diarrhea, insomnia, flushing, sudden mood shifts form the daily routine of NET cancer patients. The constant diarrhea alone strips patients of protein, vitamins, minerals–every nutrient the body needs–and leaves them in an endless state of at least marginal–and often serious–dehydration. It annihilates quality of life on its journey to destroying life.

Not that rare in the total landscape

Nor is this the rare disease many doctors think. We diagnose 5-7 times more NET cancer patients a year than we do MS or Cystic Fibrosis, two of the better-known “rare” diseases. More patients diagnosed with NET cancer live in the US than those diagnosed with all forms of malignant brain cancer combined. Among all the forms of gastrointestinal cancer, NET cancer patients outnumber every other individual form but colon cancer.

There is no ‘good’ form of cancer.

Brain cancer, pancreatic cancer and those other gastrointestinal cancer kill more quickly than the average NET cancer. The comparative longevity of NET cancer patients builds up the number of those living with NET cancer beyond those of the cancers that kill more quickly. But mere longevity means nothing without good quality of life. When even a trip to grocery store requires knowing exactly where the bathroom in every store is, there is nothing good to be said for the quality of that life.

Changing the landscape

We have significantly more research funding than we did seven years ago. The support system for patients has changed with the creation of more than 20 online support groups. Those groups cover everything from what to eat to surgery, from emotional to informational support. There are even groups that support specific types of NET cancer. We have new drugs, new treatments, new diagnostic tools, and more new ideas in the pipeline than at any point in the history of the disease.

…mere longevity means nothing…

But the general medical awareness and understanding  piece of the NET cancer landscape has not changed enough over the last seven years. No patient should ever hear any variation of the words, “You have a good form of cancer.” They should never hear, “You don’t really have cancer.” And they should never hear, “I’ve never heard of this type of cancer before.” That still needs to change if we are going to change the NET cancer reality.