Dear Santa,

NET cancer patients and researchers have been very good this year. Patients have quietly suffered the diarrhea, the hot flashes, the insomnia, and all the other symptoms of their disease. Researchers have done all they could with the tiny resources available, continuing to push our knowledge of NET cancer forward despite knowing that most of the population has no idea their special portion of Hell Studies exists.

…a cure is what we really want and need.

So how about a few extra presents in the stockings of these patients, caregivers, and researchers. Here’s what we’d like them to find in the year ahead.

1.  Broader knowledge of NET cancer among doctors

Santa, we are doing a better job of teaching new doctors about NET cancer in pre-service training, but many older doctors have still not really heard of the disease–and even those who have too often dismiss it as too unlikely to order the bothersome and expensive tests we have.

…help them out anyway you can.

We need to include sessions on NET cancer at major medical conferences. We need to set up regional conferences aimed at teaching primary care doctors the latest information we have about the disease. We need to get big, multi-doctor offices and care providers to make NET cancer a regular part of their in-service programs.

We need doctors to stop thinking of NET cancer as a zebra and start thinking of it as a horse disguised with stripes.

2.  Broader public awareness of NET cancer

Santa, if doctors know too little about NET cancer, the general public knows even less. And since we do not have any clear idea how many people actually have the disease, that could be a major problem. We have no idea how many people die from the disease and the damage it does without even knowing they have it.

Santa, this disease killed my wife.

It could be a lot. All we know for sure is that with the poor diagnostic tools we have, we are still diagnosing 12,000 people with NET cancer every year–about the same number of people we diagnose with cervical cancer. We have about 120,000 we know of who are living with the disease. But there could as many as three million others out there, according to one estimate.

There are four public service announcements sitting on a desk at CBS in New York. Getting even one of them on the air could be a big help. But we need every media outlet we can get helping get the word out to the general public.

3.  A better way to diagnose NET cancer

Santa, if we could reliably and inexpensively test for all the different forms of NET cancer quickly and easily we could save a lot of lives and a lot of suffering. Right now the only way we have to cure the disease is surgery. But surgery only works when the disease is very young–and often asymptomatic. Most of the time we only discover NET cancer that early by accident–a person goes in for an appendectomy and the surgeon discovers a NET cancer tumor.

…research is expensive…

We have a blood test for 5-HIAA currently in trials–and so far it seems to work pretty well. We need those trials to go well. But even if that method can replace the current urine test, it will only detect the tumors producing serotonin. We need tests for all the other forms of NET cancer as well–or a single test that will mark them all.

The new Gallium scans are a help, but they are pretty expensive and doctors still have to order the tests–see #1. We need something simple and cheap.

4.  More money for NET cancer research

Santa, last year we raised and spent less than $4 million on NET cancer research in the US. We accomplished a lot with that money. We started unraveling the DNA of 1000 NET cancer patients, developed new NET cancer cell lines in the lab, worked to create an animal model to speed up the testing of new drugs, worked on developing the 5-HIAA blood test, leveraged a couple of trials of new drugs and new drug combinations…

…we need to double the spending on NET cancer…

But Ron Hollander at the Caring for Carcinoid Foundation thinks it will take $100 million to find the answer to NET cancer. That means it will be 25 years before we get to a cure at this rate–and I think Ron’s estimate is pretty conservative. We’ve spent billions on breast cancer–and while we have made progress, we still don’t have it beaten. And breast cancer is pretty simple compared to how NET cancer operates.

We all agree that we need to double the spending on NET cancer–and then double it again and again. We have an increasing number of avenues we need to investigate–and all of them are going to cost money. Both CFCF and Walking with Jane want to double what we raised this year next year. We need everyone to do that. But we are going to need lots of help getting there.

…it will take $100 million to find the answer to NET cancer.

The Oncolytic Virus Fund and iCancer need your help as well. They are trying to raise a minimum of $1.6 million for a Phase I trial of a virus that eats NET cancer cells. Santa, so far they have raised well less than $200,000 between them.

5.  More knowledge about NET cancer DNA

Santa, the Dana-Farber Cancer Institute is running the DNA in blood samples from 1000 NET cancer patients as fast as they can fund the work. Knowing what those folks genetics have in common may prove an important step in our understanding of NET cancer. They hint they have found some things already that will make a difference–but need to get further into the run before they are sure.

We need something simple and cheap.

That research is expensive–that’s part of the reason we need a lot more money going into research on NET cancer. And we also need to run the DNA of the actual NET cancers because that will help unravel how the disease can be attacked as well.

Santa, make sure there is something special in those researchers’ stockings this year that will help us destroy NET cancer.

6.  New ways to ease the symptoms of NET cancer

Santa, this disease killed my wife. I know we all have to die of something, but her death was an awful thing to watch. The pain, the insomnia, the diarrhea all conspired to strip her of every ounce of dignity in the last days of her life. We desperately need more and better drugs and techniques to ease the awful symptoms of carcinoid syndrome. That syndrome also makes recovery from surgical procedures more complicated.

…the general public knows even less.

We have some drugs in trials right now. But we need more of them. And we need, especially drugs for the significant number of patients what we have has little of no effect on.

7. A cure for NET cancer

Santa, we desperately need a cure for the advanced stages of this disease. There are lots of people out there for whom surgery offers no real answer because their NET cancer was too advanced when it was discovered. It had already spread to the liver and to other parts of the body. For some, we can slow the progression of the disease and ease their symptoms. But that is not true for all of them. What is true for all of them is a slow descent into the end-stage of this disease–a place that is agony for both them and their loved ones.

We need doctors to stop thinking of NET cancer as a zebra…

The oncolytic virus in Sweden might work. And there is a woman in Seattle working with reprogramming t-cells for other cancers whose method might be applicable to NET cancer. Or maybe there is something else we have not yet thought of. But Santa, a cure is what we really want and need.

…patients and researchers have been very good this year.

Santa, NET cancer patients need these gifts a lot more than I can tell you, so help them out any way you can.

Say hello to Mrs. Claus, the elves and the reindeer. I hope the trip goes well this year. And don’t forget the pick-up at the Island of Misfit Toys. They all need a home this Christmas.

Your friend,

Harry, the NET Cancer Walker

Crossing the NET cancer bridges

Returning to Dana-Farber and Brigham & Women’s in Boston, as I did on Wednesday, is always hard. Over the four months from Jane’s diagnosis to her death from NET cancer I came to know that entire area in ways I never knew it when I lived and worked in the area in the early 1970s. An area of the city I once viewed as a very happy time in my life will be forever different because of what happened there in 2010.

 …dermatologists are often the first ones to pick up on NET cancers.

I arrived early for my meeting with Jen Chan, Jane’s oncologist, and Matt Kulke, who heads the Program in Neuroendocrine Cancer at DFCI. It gave me a little time to briefly visit people in the Family Support Center in the Shapiro Building before walking the bridges between the Shapiro Building and the Yawkey Center. As I crossed the final bridges I encountered two couples about the same age as Jane and I when we made our first visit to Dana-Farber in 2010. They wore the same deadly heroic faces we did as we headed for the scans that would change our lives.

Perhaps there was NET cancer there. Perhaps it was some other, less hopeless, form of cancer. Perhaps it was one even more hopeless. Every cancer may be different, but on the day of diagnosis, every patient is the same.

NET cancer and the dermatologist

The day before I had visited my dermatologist for my semi-annual skin inspection. He froze another pre-cancerous lesion from my face–this one on the bridge of my nose. When he was younger, he was a marathoner. Now he does distance biking for a foundation that works with children. We talk a bit when I visit about the work we both are doing.

We can’t afford the average of three incorrect diagnoses…

He told me this time that dermatologists are often the first ones to pick up on NET cancers. Patients with the characteristic flushing and roseate faces often seek out a dermatologist, thinking the problem has to do with their skin–and not some out-of-control hormone. He hears flushing and diarrhea and very quickly thinks of NET cancer.

But most often a woman with flushing and hot flashes does not get referred to a dermatologist. She may see a gynecologist, but chances are both her primary care doctor and her gynecologist will chalk it up to early menopause.

Need for NET cancer training

I keep coming back to the need to train general practice physicians to know the signs of NET cancer–to not be satisfied with an irritable bowel diagnosis until they have uncovered the underlying cause of the syndrome. IBS is not always NET cancer–sometimes it is Crohn’s, sometimes it’s an ulcer, sometimes it’s celiac disease or some kind of food allergy–but sometimes it really is NET cancer. How often that is the case, we simply do not know–just as we do not know how often right side heart valve failure is caused by NET cancer as opposed to something else.

They wore the same deadly heroic faces…

We talked about figuring out how to do in-service training for doctors on NET cancer on Wednesday, as well. With NET cancer the most important thing is finding it early–when a fairly simple, straight-forward surgery can effect a near-100 percent cure rate. Most cases are diagnosed too late for that.

We can’t afford the average of three incorrect diagnoses we currently have on NET cancer. We can only change that by doing a better job teaching doctors about NET cancer before they see their first case.

The NET cancer zebra strikes

Jane fought NET cancer for more than 30 years, all but the last four months of it not even knowing the name of the disease that was killing her.

…in NET cancer research, $125,000 is significant…

For the last 21 years three months and eight days of that struggle I fought the battle right along with her. We thought we were fighting irritable bowel syndrome for most of that time because that was what her doctors called it. But even had we known the thing’s true name there was very little we could have done about it. Unless detected very early–almost before it becomes symptomatic–there is no cure for NET cancer–only a long series of delaying actions that can alleviate the symptoms but not offer any hope for a cure.

And eventually, even those measures fail. The diarrhea becomes constant, the insomnia leaves the patient ever more exhausted and, at last, death arrives at the hands of plummeting blood pressure and depressed respiration.

The NET cancer war continues

For the two years since Jane’s death I have continued to fight the disease that killed her. I spend my days planning ways to raise money, doing research on the ongoing scientific studies of the disease, and trying to put that research into the common tongue so that those whose bodies are still fighting the disease have access to the latest that is going on in laboratories around the world.

In a corner of her office is a walking stick…

Monday was hard for me. It was the second anniversary of Jane’s death. My friends distracted me with phone calls and emails and flowers throughout the day, but I still found myself wandering the house in a haze for most of the day. And going to bed without her that night was harder than it has been for weeks–perhaps months. There is nothing worse than losing the partner you have shared everything with almost from the day you met.

It is one of the things that drives me in this work against NET cancer. I not only want to spare the patient the pain of this disease and its endgame, I also want to spare the spouse the hideousness that comes afterward. There is a quality of silence in this house at times that is like nothing else I have ever experienced–and that I lack the words to even begin to describe.

Remembering Jane’s NET cancer impact

But today was also hard–albeit in a very different way. This morning I drove up to  Boston to drop off the last check of the year for the Walking with Jane Fund for Neuroendocrine Cancer at Dana-Farber. For the first time since Jane’s death I sat down with Jen Chan, who was Jane’s oncologist. We shared memories of Jane and the work we have both done since and wept for the inspiring human being we had both lost.

There is nothing worse than losing the partner you have shared everything with almost from the day you met.

In a corner of her office is a walking stick I gave her last year as a memento of her work with Jane and the help she has given to the fight against NET cancer. She told me it resides there purposely so that when she is at her work table every time she looks up it is there to remind her of Jane and why what she is doing is important.

Another NET cancer battle

But none of that is what made today hard. Rather, it was something I learned while I was at Dana-Farber. Last summer I had a chance to tour the mouse lab where work was underway to develop a viable animal model for NET cancer. The work was going well–and still is. But that work is in jeopardy. The grant under which that research was being done will shortly run out–and the funding group has decided not to renew the grant. Now Matt Kulke, Jen Chan, the other researchers, and the development office are scrambling to find the funds to keep that program going.

I know this is an awful time of year to ask people for money…

As cancer research programs go, this one is fairly cheap: about $125,000 a year. For people doing research on breast cancer or lung cancer, that amounts to less than a rounding error. But in NET cancer research, $125,000 is significant money. It is more than the iCancer folks have raised so far toward a Phase I trial of a virus that is a potential cure for NET cancer. That $125,000 is a mountain of money for a disease that will not see $4 million spent on it total in the US this year.

A NET cancer plea

I know there are some people who dislike all uses of animals for testing. I even agree with them when it comes to their use in testing cosmetics, deodorants and other bits of silliness in popular culture, But animal models in serious medical research are a practical necessity. Many of the treatments we have for many types of cancer–and other otherwise fatal diseases–have come out of drug tests using animal models initially. The mice involved are bred specifically for this kind of thing. And the absence of animal models for NET cancer has reduced the pace of research on the disease from that of a snail to that of the slowest moving glacier. If you know someone who has survived breast cancer, thyroid cancer, leukemia–or any of dozens of other cancers–then you know someone who owes his or her life to a bunch of hairless mice or zebra fish.

–there is no cure for NET cancer–

Part of the money I took up there today will help replace the lost funding for this vital piece of NET cancer research. But that amount will barely scratch the surface of the need. I know this is an awful time of year to ask people for money–it is part of the reason I didn’t send out a general mailing this month. But if you have read this far and you happen to have some money burning a hole in your pocket that you don’t know what to do with, Dana-Farber’s NET cancer program could certainly put it to good use.

Remembering Jane’s NET cancer death

Bloody awful. That’s the only way I can describe yesterday. Yesterday was the second anniversary of my wife’s death from NET cancer and, despite the stellar efforts of many friends and former students, it was a day long on misery and short on productive work–or a positive mental state.

I remembered her laugh…

To be honest, I have been in a funk for several weeks. Whenpeople try to tell me that mourning lasts a single year, I want to slap them. Mourning is an individual thing. It lasts as long as it lasts. There is no magical day or moment that it ends. Life is not a TV show. Life is simply life. And when the life of those you love ends you have to live through what comes after at your own pace and not at someone else’s.

Yesterday’s rain suited my mood. As I stood at Jane’s grave, with the rain pelting down and soaking me through to the skin, I thought about a lot of different things.

NET cancer: the horse disguised as a zebra

I thought first about the day she was finally diagnosed correctly. It made me angry. She had suffered for so long with the painful bloating and gas and diarrhea and flushing–and it was only when her heart began to go that we finally found out what had been wrong with her all those years.

…we were willing to try…

It was not her doctors’ fault. They had been trained on the idea that when you hear hoofbeats you do not go looking for zebras. And NET cancer has been called a zebra for so long that its cancer ribbon is a zebra-stripe print. We are only beginning to understand how prevalent this disease may actually be.

We are doing a better job of training doctors in medical school about NET cancer and carcinoid syndrome, but we need to do more in-service training of those who finished medical school before the recent emphasis on the disease. And we need to develop new and better ways of detecting the disease earlier.

The kindness of strangers who became friends

I also thought back to those final days in the hospital and the incredible kindness of Jane’s doctors and nurses–and all the other staff and technicians who worked with her as she tried to beat her cancer into submission.

It was not her doctors’ fault.

And I remembered the “family meeting” I had with her doctors and members of the nursing staff when Jane was still in her first coma. I remember telling them we would do everything we could to help them find answers to NET cancer, regardless of the outcome of Jane’s case. It was something Jane and I had talked about many times in the weeks leading up to her heart surgery. We did not care how experimental something was, if that approach made sense we were willing to try it–up to the point that there no longer was a fighting chance for her recovery.

Life before NET cancer

But I also remembered the person she was before the diagnosis. I remembered her laugh and the smile she got when she was really delighted with something. I thought about our first dates, our wedding, and the long years of our marriage. I remembered her strengths, but I also remembered the weaknesses and the arguments we sometimes had–and how no matter the argument, we always woke up the next morning happy in each other’s company–the anger vanished in the night like a bad dream.

…it was a day long on misery…

I talked to her yesterday about the work I have been doing–and swore to her again that we would beat this disease, just as we had promised each other on the day of her first diagnosis.

That promise will take time and money and huge amounts of effort. But we will get there.

In the end, NET cancer will die.

Looking back at NET cancer journey

Monday marks the two-year anniversary of Jane’s death just four months after she was diagnosed with NET cancer.

Over the last few days I have reviewed the progress we have made against the disease since that date. I’d like to say we have made enormous strides in those two years. I’d like to say we have NET cancer on the run and that in a short time we will have brought it to heel. But I would have to lie to do so.

…lack of resources remains an issue.

But I would equally have to lie to claim we are no further along than we were when Jane was first diagnosed. There is water in the glass–just not enough to say the glass is half empty or half full: more like a quarter full or three-quarters empty. That is not to say there has not been significant progress made–just not enough to say a cure is at hand.

Our NET cancer ‘What ifs…’

In the fall of 2007 a group of researchers met to talk about NET cancer and carcinoid syndrome and what the goals for future research should be. They looked at what they knew–precious little–and what resources they had to work with–even less– but set ten ambitious goals despite all that.

We are still at the basic science stage…

They had not gotten very far with most of those goals by the time Jane was diagnosed almost three years later. Our real treatment options were slim–and made slimmer by the advanced state of Jane’s disease. I cannot say how often I find myself playing the “What if…” game about the timing of Jane’s diagnosis. If her NET cancer had been discovered even two years earlier, would she still be here today?

She might have lived longer, but I am not sure what quality of life she would have had–nor whether it would have been any different at the end than it was. We just have not come far enough yet.

Raising NET cancer awareness

The reality is that once we passed the surgical cure possibility stage, NET cancer was going to be the death of her. That truth has not substantially changed in the last two years. Late stage NET cancer patients are fighting a delaying action that forces them to weigh longer life against the quality of that life.

But the odds of being diagnosed earlier have improved. The first recommendation of that 2007 NET cancer summit was to improve the education of physicians about the disease. While in service training of primary care physicians remains weak, NET cancer has found its way heavily into pre-service training of young doctors. My niece, who is in medical school, tells me there was a high level of emphasis in her courses and textbooks on NET cancer and carcinoid syndrome.

…we stand on the brink of substantial change…

We need to do more training of primary care doctors who are already in practice, though. And the good news is that there seems to be the beginnings of some efforts in that direction as well. One of the priorities for the Walking with Jane Dybowski Fund at Dana-Farber is training existing primary care physicians to recognize the signs of NET cancer when they see it.

And we need to make the general public more aware as well. That may prove a tougher nut to crack.

Better NET cancer detection

We have also made some progress on developing more accurate scanning protocols to help detect the disease, another goal the summit listed. But development of blood tests, the second goal on their list, has not changed as much since Jane’s death as I would like. However, there is a new 5-HIAA blood test in trials that was reported at a patient conference in New Orleans earlier this year that looks promising. It will initially, I suspect, be a bit expensive for routine blood panels–and it only tests for the by-products of serotonin and not the myriad of other hormones NET cancers can produce–but it is a start. In the long-term, it could make a substantial difference in our ability to detect carcinoid tumors at a point where surgery will take them out.

Better NET cancer research tools

We’ve also developed animal models for the disease and have seemingly learned how to reliably grow new NET cancer cell lines in the lab. Both those things will make a big difference in developing new drugs and other treatments in the years ahead.

…we need to make the general public more aware…

The plan also called for the development of regional centers of expertise that would concentrate more experts on the disease so they could more easily communicate with each other and develop new ways of treating patients better and more rapidly–and those, too, have been created. We are getting better at standardizing the terms we use to talk about the disease–though we have a way to go there yet it seems to me.

And while we do not have the level of understanding of the disease at the molecular level we might like, we stand on the brink of substantial change there as well in the months ahead as the results of the DNA sequencing being done at Dana-Farber begin to bear fruit.

Slow progress on NET cancer treatments

But there has not been huge progress on new treatments for NET cancer. There are lots of trials going on and we have had two new drugs approved for treating pancreatic NETs. But none of those new treatments really shows promise as a cure. They alleviate symptoms, slow the progress of the disease, and create, for some patients, a better quality of life–but early detection and surgery remains the only real curative option.

Our real treatment options were slim…

We are still at the basic science stage in many respects.We seem to be building a solid foundation from which we can hope a cure will evolve.

Creating more NET cancer resources

But lack of resources remains an issue. We simply cannot finance enough research to move things along more quickly. We are, as Matt Kulke, the head of the NET cancer program at Dana-Farber, told one of our reporters this week, caught in a Catch-22 situation: we need money for research but can’t get that money from government or drug companies without providing them with evidence for the research that costs money we don’t have to do the research.

There is water in the glass…

We’ll keep working on the funding side. It looks like Walking with Jane will have generated about $92,000 for cancer research this year, more than two-thirds of it for NET cancer. We want to double that amount next year. If you can help, either with money or ideas about how to raise it, we’d like to hear from you.

One way or another, we are going to kill NET cancer.

Finding NET cancer specialists

“We need more specialists in NET cancer,” someone said to me this weekend.

They’re right. We do need more NET cancer specialists and we need them more nicely distributed around the country, as well. As seems to be the case with too many of the more obscure cancers, if you are outside a major metropolitan area your chance of finding someone close to home with lots of experience dealing with NET cancer is somewhat on the slim side. The task is not, however, impossible.

…we will all need to help.

I have just updated the section of the NET Cancer Resources page with the names of nine major cancer centers that offer specific programs for NET cancer and carcinoid patients. Each of these is doing significant amounts of research on NET cancer as well as treating a greater volume of NET cancer patients. That is no promise the treatments you are offered at any of them will be better than anywhere else, but it will provide you with a starting point in your search for a doctor. That page also includes a link to the Carcinoid Cancer Foundation‘s list of doctors with experience in treating NET cancer.

NET cancer geography

I suspect there are other cancer centers with expertise in NET cancer as well and as I find them I will add them to the list.

They have emotional skin in the game.

But even a cursory look at the list will show people in large sections of the country will find getting a local oncologist with lots of expertise in NET cancer is a difficult task. Part of that also has to do with the relatively small number of cases diagnosed each year. With only about 120,000 diagnosed patients at any given time in the US, there are likely fewer than 2000 doctors working a majority of their time on NET cancer patients.

The NET Cancer Walker

NET cancer research problem

Part of my reply to the person I talked to this weekend was we also need more people working full-time on the research aspect of NET cancer as well. Again, because the cancer is considered so rare–we diagnose between 11 and 12,000 patients a year–coming up with the funding for research is equally daunting. This year, by my best estimate, funding in the US from all sources will total less than $4 million.

Higher level trials will be even more expensive.

iCancer’s attempt to raise money for the NET cancer eating oncolytic virus developed in Sweden nearly two years ago paints a dismal picture of the challenges we face. The fund was established about three months ago and only recently topped $100,000 against a $1.6-3.2 million goal. At the current rate of fundraising, the group will be able to fund a minimal Phase I trial in about four years. Higher level trials will be even more expensive.

NET cancer road

Most of the MDs who are focused on NET cancer divide their time between treating patients and doing research. They understand how critical it is to make new discoveries about the disease–and to find new NET cancer treatments. They have emotional skin in the game. But you can only pursue so many avenues with limited funding.

…there are likely fewer than 2000 doctors…

There is a substantial effort underway to unravel the DNA issues behind NET cancer. In the months ahead there is great potential for a range of breakthroughs based on a better understanding of the genetic causes of the the disease. We can hope that new knowledge will lead to new approaches for treating NET cancer.

Putting NET cancer on the ropes

So we need more doctors, we need more researchers, and we need bundles more money. In the best of all possible worlds we would have all those things–and NET cancer would be on the ropes.

We need more specialists in NET cancer.

We do not live in the best of all possible worlds. We seem headed

for austerity budgets that will slash cancer spending in general–and may kill much of NET cancer spending in specific.

If we are going to kill NET cancer, we will all need to help.

Reviewing NET cancer research

I spent part of my morning reading a review paper on NET cancer by Diane Reidy-Lagunes and Raymond Thornton from Memorial Sloane-Kettering Cancer Center in New York. That institution carried the water for NET cancers for as long time when no one else was really doing much of anything on the disease. It remains one of the premiere groups working on NET cancer today.

…at best we have been working in pre-dawn light.

The paper, Pancreatic Neuroendocrine and Carcinoid Tumors: What’s New, What’s Old, What’s Different, illustrated the distance we have come in finding treatments for this horse disguised as a zebra–and how enormously far we have left to go. The good news is there are now significant, though not curative, treatments for pancreatic NET cancers. The bad news is those treatments rarely do much for those suffering from non-pancreatic NET cancers. It is increasingly apparent to me, at least, that while pancreatic and carcinoid NET cancers share some similarities–most specifically that both sets of tumor create excessive amounts of particular hormones–they function in very different ways otherwise. Those significant differences likely mean that drug therapies that work on one will not necessarily work on the other.

NET cancer vs. panNETs

That could mean that at some point we may come to recognize panNETs as a separate disease from NET cancer in general. That would necessitate two research tracks and individual funding sources for each. Suddenly the financial issue moves from $100 million for a NET cancer

cure to $200 million if that should prove to be the case.

…the jury is still very much out…

That is sheer speculation on my part at this point, though. We can hope that will not ultimately prove to be the case.

Other NET cancer avenues

The study also reviews the results of liver embolization trials. Again, these seem promising, but the paper makes clear that the jury is still very much out on the effectiveness of these treatments. While they clearly seem to reduce symptoms and extend life, the studies have simply not been set up to really definitively answer the question of the degree to which those statements are true.

…we may come to recognize panNETs as a separate disease…

The completed studies on RPPT have been equally inconclusive for much the same reason. The results of the ongoing trials in Houston may go a long way to answering those questions, but the results of that trial are still somewhere in the future.

New light ahead?

The paper does not address the ongoing DNA research Dana-Farber has begun on NET cancer. That is, in large part, because that research had not really yet begun at the time the paper was published. But the paper underlines the importance that research may well have in opening up new lines of research. The truth is we know so little about how NET cancer operates that at best we have been working in pre-dawn light. At worst, we have been working in midnight darkness.

…finding treatments for this horse disguised as a zebra…

The results of that research are still some months–and some dollars–away. But it will certainly result in a much better understanding of NET cancer and how it grows. We can hope that understanding will lead to to cures for all the varieties of NET cancer.

Support for NET cancer patients

In the last 23 months I have met a lot of NET cancer patients and their caregivers. It is always hard to know what to say to either one. I want to be supportive. I want to tell them it will be all right. It is what I am supposed to do.

Be there when they need you–even when they say they don’t.

And I do try to be encouraging. The truth is that if we can buy patients another year or two we may be able to buy them another year or two after that and another year or two after that. The science is evolving and things that were barely on the drawing board when Jane died are beginning to bear interesting fruit.

NET cancer progress equals hope

It is what kept Jane and me going: if we could get her to the heart surgery that would buy her the time and the strength for the liver embolization. And if we could get her through that it would buy her the time and the strength for a liver transplant.

You will have dark moments.

And the liver transplant would surely buy her enough time and strength for the PRRT treatments or surgery on her intestinal tract to scoop out the tumors there. And that would buy the time for the researchers to find a real cure for the disease. And regardless, each step would improve her quality of life–give her relief from the symptoms and let her live a largely normal life in between the procedures.

NET cancer kills

But there is another truth about NET cancer: people die from it–people die from it every day. On average, 33 people die from NET cancer in the US every day. That’s 231 people a week, about 1000 people a month, and about 12,000 people a year.

…she was fighting NET cancer the entire time.

And on the average day, 33 new patients are diagnosed with the disease–just enough to keep the number of patients steady at about 120,000.

Some people will look at that number and say, “Well, that means people live ten years after they are diagnosed.”

No NET cancer promises

And some do–some live even longer. But some are dead within months–even weeks–of their initial diagnosis. Jane died just four months after she was told she had NET cancer.

Many cancers are relatively easy to diagnose.

But how long a person survives matters a lot less than the poor quality of life they may endure before death finally releases them. There are years of insomnia and hot flashes and diarrhea to be endured. There is bloating and painful gas that erupts from nowhere and taints every potentially positive experience with pain and embarrassment. All of this leaves the patient cranky and short-tempered.

And if the caregiver responds in kind it can destroy every positive aspect of the relationship. There have been books written about the role of the spouse as cancer caregiver and everything in them applies just as well to the NET cancer caregiver. But there are things the NET cancer caregiver deals with the breast cancer caregiver cannot even imagine.

The NET cancer problem

Many cancers are relatively easy to diagnose. The average number of wrong diagnoses for a NET cancer patient is three. Jane had five. Once most cancers become symptomatic we either cure you quickly or you die quickly. Jane was symptomatic for 30 years–30 years of bloating, painful gas, frequent diarrhea and insomnia, of timing her day around when it was safe to eat–and what and how much it was safe to eat at that particular point in the day.

Jane died just four months after she was told she had NET cancer.

And even when she did everything right there were times it all just exploded into pain that was agonizing to watch. I knew, eventually, there was nothing I could do for her that would help other than give her space and time and let her know I loved her.

Twenty-five years of NET cancer

Including our courtship, we were together for nearly a quarter of a century–and she was fighting NET cancer the entire time. That meant I was fighting it too, albeit in a very different way than she was. And when it killed her, it killed a part of me as well.

…33 people die from NET cancer in the US every day.

Sometimes I wonder what our life together would have been like without the cancer that shaped so much of our lives without our knowing it. Honestly, I can’t imagine that any more than I can imagine what the next 25 years of my life will be like without her. Our life together was a thing of incomparable beauty to me, except for the ending–and others have told me that, too, was a thing of rare beauty.

Advice for NET cancer spouse

So here is the best advice I can give to the spouse of a NET cancer patient.

It is what kept Jane and me going…

First, be patient. Remember that when they say something that hurts you to the very core it is not them but the cancer that is talking. The pain is going to leak out one way or another. Oscar Wilde once said that we revenge ourselves on those closest to us. I think that is because they know we will not strike back, regardless of the provocation.

Second, be positive. You will have dark moments. Your spouse will have dark moments. You have to be positive for them no matter how dark you feel. Even a ten percent chance is better than no chance at all. Your spouse may get angry about you being positive–but do it anyway.

Bravery called for

Third, be brave. Ask doctors the questions neither of you want to ask, but that you need to hear the answers to. Fight for your spouse’s life with every fiber of your being. But also, be brave enough to let them go when a fighting chance truly becomes no chance.

 The science is evolving…

Finally, be there. Be there when they need you–even when they say they don’t.

NET cancer is a killer, but no one should have to face it alone.

NET cancer memories

I usually update this site every day. I either add a link to some new piece of information about NET cancer or write a blog post about Walking with Jane or my reaction to the latest bit of research or my feelings about the struggles everyone involved with this disease faces.

I don’t want anyone to go through what Jane did…

But for almost two weeks I have done none of these things. For reasons I do not entirely understand I am suddenly reliving everything about Jane’s last days fighting NET cancer and the carcinoid attacks it spawned as she tried to recover from heart surgery to replace the valves in the right side of her heart that the excess serotonin had destroyed. Those memories have left me too beaten to face anything more complicated than a relatively upbeat novel–and sometimes even that has been beyond me.

In fact, even writing this today is proving a struggle.

Jane’s last NET cancer battles

December 10 I will face the second anniversary of Jane’s death. Eight days ago was her birthday–and the second anniversary of what we now know was the first in the series of carcinoid attacks that eventually would kill her. Ten days ago was the second anniversary of the heart surgery that lasted four hours longer than expected because the damage the serotonin had done to her heart was so much worse than we had expected.

There is no cure for NET cancer right now unless…

But today was a bright spot. It was Thanksgiving Day and–after a night that was touch-and-go for a while–so touch-and-go that they found another room for me to sleep–Jane had greeted me with a big, “I love you hubby” that washed all the darkness and foreboding out of me. We arranged for her father, sister, cousin and two friends to come visit for a couple of hours. Then we shared Thanksgiving Dinner: a cup of chicken broth for her and a bowel of pumpkin soup for me.

It was the best Thanksgiving we ever had.

Two days later, she was in a coma again–and again I had to decide whether to let her go or not.

NET cancer decision points

You do not know what that is like if you have not had to do it. TV shows make it look easy. So do movies. Reality is something else entirely. It was a decision I had to make three times. It weighs on me even now–even having concluded logically that in each case I made the right decision given what I knew at the time–what all of us knew at the time.

But I wish none of it had happened.

This is how little we knew at the time: On December 10, as I held Jane’s hand and waited for her to die, her doctor told me that Jane’s case had essentially doubled what we knew about NET cancer and carcinoid syndrome. Among the things we did not know was that every time Jane started to rehab her heart the exercises triggered a new carcinoid attack. The tumors in her liver flooded her body with serotonin that crashed her blood pressure and her respiratory system.

If we had known that, she would have died November 22. I would not have put her through the emotional roller-coaster of the remaining 18 days of her life. But I did not know–and she did not know–none of us knew.

One NET cancer’s impact

There was much that came out of those 18 days that was good for our knowledge of NET cancer and for the lives of the people Jane came in contact with. Jen Chan, her oncologist, sent me a note this week. “I recall Thanksgiving-time two years ago with you and Jane as if it was just the other day,” she said. I think about all the patients she has had since Jane and know the impact my wife had on Jen was anything but small.

One of her nurses sends me a card a couple of times a year, and I know that many of those remember her well. I ran into her heart surgeon a few months ago–a man who does 2-3 heart surgeries a day–and he, too, remembered Jane’s battle.

You do not know what that is like if you have not had to do it.

I think about all the work Walking with Jane has helped to finance and–at times–inspire, and know that has not been a small thing either.

But I wish none of it had happened.

NET cancer reality

So here is the hard truth–the truth no patient or caregiver wants to hear or deal with.

There is no cure for NET cancer right now unless we catch it really early. There are some hopeful things on the horizon, but at this point that is all they are.

It was the best Thanksgiving we ever had.

That means that many of you are going to face what Jane and I did. We were lucky in that we had talked about end-of-life issues. We thought we knew what we were looking at. But we were wrong.

We think of death as a black-and-white issue. We think of DNRs as black-and-white as well.

They aren’t. They are a thousand shades of every color in the rainbow–and you cannot hope to anticipate all of them.

NET cancer and the end

Have the conversation anyway. You need to have as good an understanding of where the lines are as you can.

 I am suddenly reliving everything about Jane’s last days…

But, in the end, if you are the primary caregiver, you are going to be alone in a room full of people who are waiting for you to make a decision about whether or not your spouse goes on living or dies. And even when it is clear-cut–as it was for me on December 9–it will likely be the most emotionally wrenching decision you will ever make.

If you want to know why I spend my days trying to kill NET cancer, this is it: I don’t want anyone to go through what Jane did–or what I did–at least not about NET cancer.

Getting NET cancer on the radar

One of the things high on my NET cancer agenda is raising awareness about the disease with the general public as well as with primary care physicians. To that end, I wrote four scripts about a month ago that I shared with people in the field. Response to the scripts from them have been very positive.

Now I’d like some input from regular people–and some help in getting them turned into usable video and audio spots.

Please let me know what you think. And if you can help turn these scripts into real product or help get that product on the air, I’d really like to hear from you.

NET cancer Script 1:

My wife and I had plans…

But she died six months before we were supposed to retire—and just four months after being diagnosed with a cancer her doctor had never heard of: Neuroendocrine Tumor Cancer.

We think she’d had it for 30 years.

But it’s hard to detect. It looks like irritable bowel syndrome in one patient, early menopause in another, heart disease in a third—in fact NET cancer can produce almost any hormone your body produces—in quantities that screw up your body chemistry.

NET cancer—it’s a killer.

Closing Screen: Learn more at walkingwithjane.org, carcinoid.org, or caringforcarcinoid.org

NET cancer Script 2:

Do you have irritable bowel syndrome?

Have you tried the diets and the medications—but still get bloating, gas, and diarrhea?

(Cut to symptoms screen)

Maybe you don’t really have IBS.

Maybe you have Neuroendocrine Tumor Cancer.

If you have two or more of these symptoms, talk to your doctor about NET cancer.

That conversation could save your life.

NET cancer—it’s a killer.

Closing Screen: Learn more at walkingwithjane.org, carcinoid.org, or caringforcarcinoid.org

NET cancer Script 3:

November 10 is NET Cancer Awareness Day.

Never heard of it? Neither had my wife’s doctors. One called what she had irritable bowel syndrome, another called it anxiety, a third told her it was all in her head. This went on for 30 years.

Less than a year from our retirement, someone finally got it right. Four months later, my wife was dead.

Do you have two or more of these symptoms? Talk to your doctor about NET cancer. It could save your life

NET cancer—it’s a killer.

Closing Screen: Learn more at walkingwithjane.org, carcinoid.org, or caringforcarcinoid.org

NET cancer Script 4:

Have you been diagnosed with Irritable Bowel Syndrome?

(Cut to symptoms screen)

Do you have two or more of these symptoms?

You could have NET cancer.

Talk to your doctor. That conversation could save your life.

NET cancer—it’s a killer.

Closing Screen: Learn more at walkingwithjane.org, carcinoid.org, or caringforcarcinoid.org

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With your helpful comments and knowledge, we can take the next big step toward getting NET cancer on the ropes and killing this cancer once and for all.