Category Archives: awareness

The pain of NET Cancer Day

awareness, Caregiving, Death, NET Cancer Awareness Day/Month,
People tell me my wife was beautiful. I certainly thought so. But the beauty of her mind and soul dwarfed her physical beauty. NET cancer could not touch those.

The Tenth of November

I never look forward to World NET Cancer Awareness Day. It reminds me of too many things. It is the day of the month on which Jane died, though she died in December and not November. But the tenth of every month tends to be difficult.

We need to kill NET cancer.

Still, November 10 is worse than all but December 10. It was the night before what would prove our last trip to Dana-Farber together–the last night that had any sanity in it at all. Not that there had been much sanity in our lives for more than a year.

The price of ignorance

The H1N1 virus had hit Jane particularly hard in October the year before. She’d missed a month of work between it and the pneumonia that followed. In truth, she never fully recovered from that.

…the last night that had any sanity…

I wonder how many years that flu cost us. Sometimes I think it opened the door that let the NET cancer she’d unknowingly been fighting for 30 years gain the upper hand. Other times, I think the NET likely weakened her enough to let the H1N1 really kneecap her. Probably both statements are true. Both things killed her, though the cancer was always going to be the root cause.

The face of NET

She was in tough shape on November 10. We both knew things were coming to a head. The thrice-daily octreotide injections were doing little to thwart the diarrhea, the bloating, or the swelling that had started in her legs that spring and had spread to her abdomen. She’d stopped trying to go up and down the stairs to the cellar. She’d stopped helping with the cleaning, though she did still manage to cook dinner much of the time.

…she never fully recovered…

She was a better cook than I was, so I cleaned up most nights. When I cooked, she cleaned. Now, it didn’t matter who cooked, I did the dishes. We’d always shared the yard work and the housework. She didn’t like that those tasks now all fell on me. She told me she felt guilty. I told her she’d do the same for me if I were the one fighting cancer.

Talk in the face of NET

We talked that night. She listed the things we needed to make sure we asked the next day. I added a couple of things. My official job was to make sure we came away with answers to everything, as wells taking the notes. My bigger job was staying supportive and positive no matter what we heard.

She told me she felt guilty.

We talked, too, that night about other things. We always did. We talked about our days, what we’d read, what our students were doing. The long drive to and from Boston sat on the table in front of us. It stayed quiet, as did the cancer once we’d finished with it. We both knew they were there.

Miracles needed

I can’t say what she felt that night. I know I was terrified. She’d lost too much weight, too much strength. She was dying and there was nothing I could do but hold her hand, massage her feet, and hope the long-odds approaches both we and her doctors had in mind would work. I put on a confident face. She did the same.

We both knew they were there.

We didn’t need a miracle–we needed several. It turned out we needed miracles we didn’t even know we needed–that the doctors didn’t even know we needed. It was November 2010–and what we knew about NET cancer with certainty could be reduced to a 3×5 index card. And some of that was wrong.

Long day’s journey into NET

The next day, the traffic was awful. But we came away hopeful. We met with a dietician who gave us some thoughts on things Jane might eat that would help. Jane’s doctor wanted to set up a procedure for the following week to draw out some of the fluid from Jane’s abdomen that would alleviate some discomfort and help get a handle on what was going on.

She was dying…

But when we got home–after three hours in traffic–I had to carry Jane up the stairs. It was the first time that happened. We chalked it up to each other as the end result of a long day and too much time sitting in traffic.

NET consequences

The next day, Jane’s heart surgeon called. A month before we’d talked about surgery “after the holidays.” Now, after seeing the results from the day before and talking with Jane’s other doctors, he wanted to do it Monday or Thursday. We went with Monday. That meant driving to the hospital late Sunday afternoon

I had to carry Jane up the stairs.

I’m not sure Jane would have made it until Thursday now. Given the month that followed, I’m not sure she would not have been better off. She would have died at home in her own bed on her own terms. But we both wanted her to live–to have a fighting chance–to reach the goal she’d set the day she was diagnosed.

What it was worth

She had the surgery. Her heart was worse than they expected. With a lesser surgeon, she would have died on the table. The doctors learned a lot in the days that followed. The people around us learned a lot in those 25 days. I learned a lot in those 25 days.

…to have a fighting chance…

But it cost her more than I can say. And I have never been the same. The tenth of the month has come around 107 times since I caught her last breath on my lips.

The deepest wounds

I did not cry that night. I was too numb–too numb for a long time. And I have work to do. But the tenth of every month breaks open every wound and leaves me with tears and memories–memories of the end.

…it cost her more than I can say.

We need to kill NET cancer. It tears apart the soul of the patient who has it–tears apart the souls of those they love.

My nightmare nights

awareness, Death, Grief, Marketing NETs, NET Cancer Awareness Day/Month
My landscaping nightmare helps me deal with the nightmares that await me in the dark of my bedroom. The project outside reminds me that every nightmare has a solution--but the solution often requires lots of though and lots of work. Equally, it requires thinking about the worst-case scale of the problem.
My landscaping nightmare helps me deal with the nightmares that await me in the dark of my bedroom. The project outside reminds me that every nightmare has a solution–but the solution often requires lots of though and lots of work. Equally, it requires thinking about the worst-case scale of the problem.

What keeps me awake

Three things keep me up at night. The first derives from the empty space beside me where Jane is supposed to be. I’ve tried for years to describe what that is like–how many nights it makes me reluctant to go to bed and deal with that reality.

Jane’s story becomes the norm.

I won’t go into that again here. I’ve written too much about grief, here and elsewhere, over the years. Not much has changed over the eight years, ten months, and 29 days since Jane died. I’ve just gotten better at coping with the pain.

The diagnostic nightmare

The second thing that keeps me up is the reality that too many patients go through too many incorrect diagnoses before learning the cause of their suffering is neuroendocrine cancer. Despite the improvements in awareness and scanning technologies, patients still go through years of shuffling between doctors and multiple diagnoses that tell them they have something else.

…the empty space…

I wonder how many patients die of NET cancer believing they have something else. Jane could have dropped dead in front of her students with a piece of chalk in her hand–and I would have been told she died of heart failure or a stroke. Her students told me later of episodes in her classroom her last year teaching that sound like a stroke–sudden changes in her voice, in her handwriting, moments of confusion…

Why diagnostics matter

The valves in the right side of her heart were dying. The serotonin from the tumors in her liver was not being metabolized. Instead, it was frying her valves into a brittle, fibrotic mass that leaked fluid into her legs and abdomen. We wouldn’t learn about that until September.

…too many incorrect diagnoses…

Her liver was toast–90 percent of it eaten by neuroendocrine tumors. It was a marvel she could walk, let alone climb stairs or teach. And then, she couldn’t.

How many don’t know?

By the time Jane was accurately diagnosed, it was really too late to do much of anything. We tried anyway. Doctors tried to treat the symptoms, tried to decrease the tumor load, tried to repair the damage to her heart, made plans to try to address the liver problem. And we made plans for the years ahead we thought she might find a way to enjoy.

Her liver was toast…

I wonder how many patients die without knowing what they had? How many die without the treatments that might ease their suffering? How many loved ones think they know what killed their wife, husband, mother, father, child–and are wrong? Not, mind, that it makes much difference in most respects: loss is still loss.

Autopsy studies

The number may be bigger than we think because the number of patients is potentially much bigger than we want to think. In February, 2010, eleven months before Jane died, researchers published a paper on the results of an autopsy study.

We tried anyway.

They hadn’t gone in looking for anything in particular. They just wanted to see what was there. They found neuroendocrine tumors in close to one percent of the bodies. I encountered that study only after Jane had died.

Backing up that study

Three years ago, I had lunch at a NET cancer conference with a doctor from a major medical center. He told me one of his colleagues was engaged in a similar study–and finding similar results.

…researchers published a paper...

Slightly less than one percent doesn’t sound like a lot–until you scale it up. The US population is roughly 330 million. One percent of that is 3.3 million. To me, that’s a big number. And it scares me.

The stuff of nightmare

We can’t say with certainty what the number of undiagnosed neuroendocrine cancer cases is. Three million is a worst-case scenario. But it is the stuff of my nightmares.

And it scares me.

Primary care doctor awareness is enormously important. Nurse practitioner awareness is enormously important. ER personnel awareness is enormously important. Catch this cancer early in its progression and surgery can create a cure.

Catch it late, and Jane’s story becomes the norm. It’s a norm that I would wish on no one. And it is too often the case. It, too, is the stuff of my nightmares.

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.

Death, incidence, prevalence–a NET perspective

awareness, Death, NET Cancer Awareness Day/Month

We know so little about NET cancer that we cannot even put an accurate number on how many people die from the disease each year. That level of ignorance scares me to death.

 

We know so little about NET cancer that we cannot even put an accurate number on how many people die from the disease each year. That level of ignorance scares me to death.

Diagnoses and deaths

About 328,030 Americans were diagnosed with gastrointestinal cancers in 2018. There were 165,460 deaths. That’s 27 percent of all the cancer deaths in the US. (These numbers come from a presentation at the Dana-Farber Cancer Institute Visiting Committee.)

…more research than we are doing now.

In contrast, 234,030 people were diagnosed with lung cancer and 154,000 died; 334,200 new breast cancers were diagnosed and 42,260 people died.

Death by the numbers

In terms of both diagnoses and deaths, colorectal cancer is the worst of the GI cancers. Last year, 145,600 Americans were diagnosed with it: 51,020 died. It is also among the worst cancers overall in terms of mortality–only lung cancer killed more Americans last year.

There were 165,460 deaths.

Traditional pancreatic cancer was diagnosed approximately 56,770 times last year; 45,750 died from it. It is the third most common form of cancer death in the US. (These numbers come from a presentation at the Dana-Farber Cancer Institute Visiting Committee.)

Where NET cancer sits

Liver/biliary cancer is the fifth most deadly form of cancer. With 35,740 deaths a year, it trails breast cancer by about 6500 deaths a year. But it is a far less common diagnosis at 54,400. (These numbers come from a presentation at the Dana-Farber Cancer Institute Visiting Committee.)

…only lung cancer killed more Americans last year.

As I wrote two days ago, we have no up-to-date numbers for NET cancer. The 12,000 cases a year cited in 2012 would put it behind both stomach cancer (27,510) and cancer of the esophagus (17,650) but ahead of all other GI cancers. Even assuming a five percent increase in diagnoses, which would take the number to 16,080, it would still trail those more frequently diagnosed cancers.

But no up-to-date numbers

We don’t have any recent statistics for how many people die from the various NET cancers each year in the US either.

…more frequently diagnosed cancers.

The one thing we do know is, in 2012, about 171,000 diagnosed patients were living with the disease in the US. We had two drugs approved for use in NET cancer patients at the time–and surgery for those whose disease was discovered early enough for that to be helpful.

Making a case for an increase

We’ve since added three FDA approved drugs, liver embolization procedures, and a radiation treatment called PRRT that had been used for some years in Europe. There are additional treatments in the pipeline.

We don’t have any recent statistics…

My guess is that 171,000 patients has increased over the last seven years, perhaps significantly.

Why second?

But even if it hasn’t, NET cancer would still be the second most prevalent form of GI cancer, trailing only colorectal cancer. The others kill too fast to build up that large a number of patients. Simply put, there are very few five-year survivors of pancreatic, liver, stomach or esophageal cancer.

There are additional treatments in the pipeline.

Colorectal cancer is also deadly, but so many patients are diagnosed with it that the net gain in living patients is about 100,000 a year.

Quality of life issues

Yes, NET cancer patients can–and often do–live for many years after diagnosis. I know many patients who have fought NET cancer since before Jane was diagnosed over nine years ago. But quality of life matters–and the quality of life for many NET patients is quite poor: constant diarrhea, insomnia, intestinal pain and bloating are just some of what those patients deal with constantly.

The others kill too fast…

Our treatments, other than surgery, are not curative. They offer symptom relief and slow the progress of the disease. Nor do they work for every patient.

And many suffer for many years before they get a diagnosis. It was 30 years between Jane’s first symptoms and her diagnosis. She was an outlier, but many go 5-7 years before being diagnosed.

Research and awareness matter

The problem is the tumors really can form just about anywhere–and the symptoms can vary based on where the tumor is located and what hormones it is producing. And sometimes, there are either no hormones to detect–or, perhaps, hormones we don’t yet know how to detect.

…many suffer for many years…

All of this underlines–again–the need for greater awareness among both medical professionals and the general public–and much more research than we are doing now.

Searching for the real NET number

awareness, NET Cancer Awareness Day/Month
An accurate number of NET cancer patients could tell us whether we are looking at a zebra or a horse with stripes.
An accurate number of NET cancer patients could tell us whether we are looking at a zebra or a horse with stripes.

#30NETfactsin30days: November 1

The number of new diagnoses of NET cancer in the US is rising faster than other cancers: an over 6-fold increase from 1973 (1.09 per 100 000) to 2012 (6.98 per 100 000). 

What’s the right number?

Few things about this project have been more frustrating than trying to figure out how many new NET cancer patients are diagnosed each year. The last “official” figures come from a 2012 study that found 12,000 new patients and a total of 171,321 diagnosed patients living with the disease.

…we all need to be more aware…

That same study cited an expected growth in diagnoses of five percent a year. For cancer, that’s a fairly high growth rate in diagnoses. Lung cancer cases, for example, are in decline. Most other cancers seem only to grow as fast as the increase in population. The number of breast cancer diagnoses a year, for example doesn’t vary much from year to year.

Complicating the potential number

At five percent growth in diagnoses a year, 2019 should end with about 16,900 new patients. That, of course, also assumes that awareness and diagnostic techniques are no better than they were in 2012. Since that year, we’ve seen two new PET scanning technologies begin to come on line–the Octreoscan and the Gallium-68 scan.

The last “official” figures come from a 2012 study…

We’ve also seen the development of a new 5-HIAA blood test that is lest cumbersome than the 24-hour urine test doctors used in 2012. That test has only begun being used very recently, so it’s likely not had much impact yet–but may well do so in future.

Why numbers matter

The patient population has also likely grown during that period as new treatments have become available–but that’s an issue for another day.

…it’s likely not had much impact yet…

The lack of up-to-date data would be less of a problem with a disease where the diagnoses don’t vary much from year to year. But we’re still trying to define the scope of the problem we face. More patients creates greater urgency for finding treatments–which means a greater need for research funding, as well as a greater need for oncologists with knowledge of how to treat this peculiar disease.

More importantly, it means we need primary care practices to have greater awareness of the disease than many do.

Meanwhile, in Kentucky

Globally, there is evidence that the number of cases is growing outside the US. But there is one piece of evidence that NET cancer diagnoses are growing at a greater than five percent a year rate in the US.

More patients creates greater urgency…

In an article published in Oncotarget in April, 2018, researchers looked at more recent data on NET cancer diagnoses for the state of Kentucky through 2015. They found an increase from 3.6 per 100,000 in 1996 to 10.3 per 100,000 in 2015.

A word of warning

Now Kentucky has a higher cancer incidence rate than most of the rest of the country across the board. And its NET cancer incidence in 2012 was 8.4 as compared to 6.98 per 100,000 for the US as a whole. But that’s a greater growth than five percent a year in that locality.

…10.3 per 100,000 in 2015

How big an issue NET cancer will become in the years ahead is an open question. Right now, we all need to be more aware of it–and of its potential.

Vote for Greta for Patient Hero

awareness, Personal statement, Uncategorized

My friend Greta is dying.

 She’s dying of NET cancer.

I can’t stop that. No one can. 

I watched the same disease kill my wife. I know with ghastly precision what Greta is going through—what her family and friends are going through.

Before this final turn, Greta was nominated for the Hero of Hope Patient Award. She’d like to win it. I’d like her to win it.

Her biography is at the link, if you need more than my endorsement to vote for her. 
So follow the link and cast your vote for her.

Today is the last day of voting.

Please.

https://conquer-magazine.com/2019-hero-of-hope-patient-award?fbclid=IwAR1jWAQdxJ8yIMHeDqZ2dd7LCcXIEo2KRhjhw8K99yDcdY09Tx1Qg-LO1zE 

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

PMC adds $500K to NET research

awareness, Boston Marathon Jimmy Fund Walk, Pan Mass Challenge

Word is unofficial

I’ve just received unofficial word that Pan Mass Challenge (PMC) riders raised $500,000 for NET cancer research at Dana-Farber this year. The exact amount won’t arrive until the final tally in January.

I’ll be riding–and walking–again next year

Combined with the money from the Jimmy Fund Walk, small donors will have combined their efforts to the tune of over $650,000 for NET cancer research at DFCI this year.

PMC, Walk boost 3-in-3 total

This also, unofficially, puts the total for 3-in-3: The Campaign to Cure NET Cancer at just over $3.5 million. The campaign closes in December and aimed to raise $3 million over three years to support NET cancer research at the Dana-Farber Cancer Institute in Boston.

…small donors will have combined their efforts…

This is a wonderful piece of news for NET Cancer Awareness Month in Massachusetts and for Worldwide NET Cancer Awareness Day on November 10.

Looking forward to next year’s PMC

My personal thanks to all those who rode and walked and to all those who donated. You are truly making a difference in the lives of others.

…a wonderful piece of news…

I’ll be riding–and walking–again next year–Gods willing and the creek don’t rise. We will, with your help, find the answers to NET cancer.

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.