Good morning from the East Coast of the United States and welcome to the Second Annual Walking with Jane Social Media Marathon. My name is Harry Proudfoot, president of Walking with Jane, a small foundation I created after my wife, Jane, died of carcinoid/NETs less than four months after being diagnosed with the disease.
For the next 18 hours I’ll host what I hope will be a long conversation about the NET cancer experience for patients and caregivers, as well as about research and treatment. The day will include interviews with doctors, researchers, and people raising money support their efforts. We’ll also have posts from a number of patients and caregivers.
But when I first conceived of the Social Mediathon 20 months ago I wanted it to be more interactive than the telethons and radiothons everyone is familiar with. I hope you’ll be inspired to bring your own voice and your own experiences with the disease to the table. I hope those of you who are encountering this disease for the first time will ask questions about the disease and how it works and what people will experience.
Part of what today is about is reaching out to the larger world and trying to get people to pay attention to this little-known and poorly understood form of cancer. It is considered a rare disease–and at first glance, that appears to be true. But we really have no clear indication of how widespread this disease actually is.
We know we have about 120,000 diagnosed people living with the disease in the US. Five years ago, we were diagnosing about 10,000 cases a year. But as our ability to detect the disease has improved, that number has increased markedly. This year, according to speakers at a Caring for Carcinoid research conference in Boston, we expect to diagnose 14-15,000 new cases of the disease.
As new methods of diagnosis become increasingly available, we can reasonably expect those numbers to continue to increase. While no doctor will commit to a specific number, some evidence suggests there could be as many as 3 million undiagnosed cases in the US right now.
Several years ago, well before Jane and I had ever heard of NET cancer, a group of people concerned about NET cancer decided carcinoid/NETs–yes, we have lots of names for the same disease–well talk about that later–needed its own awareness day. They settled on November 10 for Worldwide NET Cancer Awareness Day. That group serves as the organizing committee for the events that are happening across the globe today. This would be a good time to go check out their website.
There is a wide range of activities going on out there today–as well as some activities you can take part in from the comfort of your own home–including this Social Mediathon.
We’ve had the morning’s first technical glitch. The opening post was supposed to put itself up at 6 a.m. while I had breakfast. It didn’t happen, so we are a bit behind the curve. I think that’s all straightened out at this point.
While we are on the subject of things technical, let me give you the list of places you can get access to these posts today. You can, of course, see everything as it happens at walkingwithjane.org. We are also on Facebook, Google+, and Tumblr. I will also be live tweeting as we go at @Harry Proudfoot. I have a Pinterest, but really haven’t a clue what I am doing there. I may eventually figure it out today.
If you want to share these posts, please feel free to do so. Today is about spreading the word beyond the zebra herd.
In order to understand what makes carcinoid/NETs so difficult to detect, we need to talk a little bit about how the disease works. I will keep this pretty simple, knowing that for some of our audience this is new ground.
Neuroendocrine tumors–that’s what the NET stands for–can form anywhere in the body. Usually, they form somewhere that excretes hormones or peptides–but they don’t have to. The primary tumor generally stays pretty small. Most never get much bigger than the size of a lentil–and they don’t show up well on most scanning methods. In Jane’s case, the primary tumor looked like an imperfection in the scan in the area around her appendix.
But their small size doesn’t make them less dangerous. The primary tumor can play mother to dozens of equally small tumors scattered throughout the body. And when a tumor begins growing in the liver, it can get quite a bit larger than a lentil–doing severe damage to the liver in the process.
And just to further complicate matters, the tumors can manufacture any of the more than 24,000 hormones and peptides the body produces. Those extra hormones can play hoy with the body’s internal chemistry in lots of different–and unpleasant–ways. Jane’s tumors produced an abundance of extra serotonin–a hormone that controls blood pressure, respiration, sleep and digestion. She suffered from constant diarrhea and insomnia. She dealt with the effects of low blood pressure–she could pass out just from standing up too quickly. Her rapid digestion of her food meant she was not getting as much nutrition from her food as she should have been getting. That left her rail thin. She suffered excruciatingly painful bloating and gas that further exacerbated that problem because she often didn’t feel like eating.
At the time, we had just one test to detect excess serotonin–a 24 hour urine test. Today, we also have a blood test, but it is not quite as reliable as the urine test. But at least we have a test. For the vast majority of 24,000 hormones and peptides, we have no tests at all. Even if we did, testing for all 24,000 is not something any doctor would order. And some NETs appear to produce no hormones at all.
One of the Holy Grails of carcinoid/NETs research is finding a reliable and simple way to test for it. We don’t have one yet–but we are working on it. We are also looking for new ways to use radiation to spot the tumors. The best we have in general use right now is called an OctreoScan. But a new method using gallium-68 is in the trial stage and shows great promise for some tumors.
Last year, I sat down with Dr. Matt Kulke and Dr. Jennifer Chan at the Dana-Farber Cancer Institute in Boston to create a video on frequently asked questions about NET cancer. You should go check it out on YouTube now.
I promised we’d hear from people other than me today–and this seems like a good time to bring in a patient. Michelle Sieman is one of the first people I “met” as I was setting up Walking with Jane in the Summer of 2011. We talk online with some regularity but have never actually met in person. She lives in Pittsburgh PA, the city I grew up in. She was diagnosed with lung carcinoid 2011.
How would you feel if your doctor told you… “Well, if you had to get cancer, this is the one you want.” or “You’re one of the lucky ones… yours doesn’t usually spread.” How about, “Well, it IS cancer… but not like “normal” cancer.” WTF does that even mean?!?
Think about that for a second… “it IS cancer… but not like “normal” cancer”. Really? Exactly what is “normal cancer”?
I’ll bet most of you have never even heard of Carcinoid Cancer… I hadn’t either… Until my diagnosis came in September 2011 (as if that year wasn’t bad enough already!). Today, I live in fear. Fear that one day I will hear those words again (even though they’ve said I’m cured). Fear, because some in the medical community are so arrogant that they would rather misdiagnose a disease than think outside of the box. Fear, because medical professionals are taught to look for horses… not Zebra’s. Fear, because CANCER IS CANCER and THEY should know that by now!!
It’s shameful how true this is… neuroendocrine cancers ARE rare… Doctors DO treat you like you’re an idiot (most times because you are more informed than they (having said that, I would like to thank the Doc’s who actually listen to us))… Answers are HARD to find… and most importantly, what knowledge is available will SCARE THE CRAP OUT OF YOU! No one can answer your questions, no one can tell you what’s going to happen next… and sometimes it seems that NO ONE wants to know.
Michelle is right: When you start to learn about NET cancer, it will scare the crap out of you. I’ve been around a lot of cancers over the course of my life. I’ve sat with people going through chemotherapy in the primitive years and held their hands while they were puking their guts out. I’ve walked people to the end of lung cancer, ovarian cancer and breast cancer. I’ve seen bone cancer, liver cancer, testicular cancer and brain cancer. I am, I sometimes think, a cancer magnet.
But I have never seen a cancer as awful as carcinoid/NETs. Doctors who have only read about the disease will tell you it’s slow-growing–and that that is a good thing. They haven’t seen what it does to the quality of your life–and the quality of he life of your family. There is a piece I wrote last year where I tried to explain how this disease kills.
As always happens on one of these–especially early in the day–I am having trouble keeping up. A few minutes ago, the walkingwithjane.org site received the following comment:
My thanks to Jen for the detail she’s gone into above. I hope to come back to the immunotherapy idea later today.
I’ve had a difficult morning, above and beyond what I have been posting and responding to on the NET cancer front. Two people I am close to are facing cancers–and potential cancers–of a different stripe than I am dealing with here. I’ve taken some time to help them get through what they need to get through today. they seem OK for now, but I may need to vanish at some point if they need me.
Through the first six hours I’ve thrown a lot of things at you. The metrics tell me that despite my having to walk away from things here for a couple of hours, the audience has continued to build–to the point that we have an audience currently numbering around 1400. The thing about the way this works is you can easily drop in at any point and read the things I’ve posted this morning faster than I can get them in front of you. Keep in mind that all of this is being cross-posted to several different platforms–and i have to check in on those platforms periodically.
Back in February, someone asked me a question with broad implications–for all that it was directed at the lack of interest in finding a cure for NETs. I shared my answer with the individual, but never with a broader audience. Here’s something to ponder as you consider your lunch options here in the East–or think about second breakfast on the West Coast.
Question… Why is it so easy to “like” and “share” pictures and requests from soldiers, children, cute animal videos… but it is like pulling teeth to bring awareness to a cancer that is afflicting more and more people each year.
Napoleon said no plan ever survives contact with reality–and that has been the case here today right from the start. I’m never really sure where the words or comments are going to take me on a day like this. Truth be told, things were changing when I started writing the opening post about 5:15 this morning. I planned to start the day by talking about Walking with Jane. Instead, I sidetracked myself into an entirely different direction.
You can read about who Jane was and what Walking with Jane is elsewhere on the walkingwithjane.org site. You can probably get a feel for what we are trying to do just by reading some of what we’ve posted to this point today. And if you haven’t already read everything I’ve posted today–here and elsewhere–and if you haven’t explored the rest of the walkingwithjane.org website, I’ll encourage you to do that right now. Trust me, this will all still be waiting when you get back–even I don’t write that fast.
And if you haven’t been to visit netcancerday.org, you should probably do that, too. There is a lot going on around the world today in honor of NET Cancer Day and NET Cancer patients.
But what you want see here–or there–is how close we came last winter to just walking away from this website–and how close I came to shuttering Walking with Jane, Inc. at the same time.
Last winter was a frustrating time for me. The website was withering on the vine. December, January and February had seen less than 1000 views combined. Increasingly, I felt I was writing for an audience of 12-15 people. They were nice people, but it was hard to justify spending hours researching and thinking and writing for a group that size.
On the foundation side, we had missed all our goals for 2013 by substantial margins. We did dinners and yard sales and comedy shows–and at the end of the day I looked at the money we were raising and the amount of effort it took to pull those things together and wondered what I was asking people to kill themselves for. Part of the problem was the economy–but part of the problem was we were trying to do too much with too few people.
And there were days I looked at NET cancer and how few people were involved in finding a cure–or even a way to slow it down–that I wondered if I could make any kind of difference at all. Jane said to me before she died that she wanted me to enjoy myself–wanted me to remarry and create a new life away from the sadness.
My wife never understood how much I loved her–never understood how serious I was when I said to her that if anyone or anything took her from me they had best hope the police found them first. I told her once that I loved her too much–and she asked me how that was possible? It was another of those things one cannot describe in words–only in actions.
And yet I found myself painfully tempted last winter to take her at her word and try to forget carcinoid/NETs and all the pain it has caused me.
But then I stopped thinking about the disease. Instead, I started thinking about the people I had met with the disease and what Jane went through and what they were going through and what their families were going through. I deciders I would give the website one more month. If March was better than the year before, I’d give it another three months.
In April, I took all the knowledge I had about the disease and wrote a piece about what it is like to have NET cancer. And the website erupted.
As I write this, we are closing in on 13,000 views for this calendar year with most of November and all of December still to ahead. Despite the three anemic months of December January and February–we are over 13,000 for the last 12 months. The best calendar year we ever had previously was 8500 in 2012–the first full year the website existed.
Several people have said to me in recent months when I have mentioned how close I came to giving up the website how glad hey were I didn’t–that it has made a real difference to them as they have fought this implacable disease.
The fundraising piece hasn’t gotten much better–or easier. But even there, things seem better. We are starting to learn how to organize a fundraiser so it doesn’t leave all of us feeling completely wasted afterward. That helps. One forgets how exhausting the learning curve can be.
The bottom line is we are not going away. NET cancer better be ready to deal with the sleeping giant it has “awakened and filled with a terrible resolve.”
1. Please give us a brief history of your foundation. When were you founded and why? What has happened to your organization since it was founded?
Founded by metastatic carcinoid cancer patient Nancy Lindholm in 2005, in response to the lack of treatment options for neuroendocrine cancer patients, the Caring for Carcinoid Foundation (CFCF) is the most focused and deliberate funder of neuroendocrine cancer research. Since 2005, CFCF has awarded over $10 million in research grants to leading scientists at renowned institutions throughout the US and abroad. We have a disciplined, pro-active research strategy overseen by a distinguished Board of Scientific Advisors and an expanding portfolio of basic and translational studies to accelerate the progress to better treatments and cures.
2. What is the primary mission of your foundation? Are you more research or awareness focussed? Why?
The mission of the Caring for Carcinoid Foundation (CFCF) is to fund research to discover cures and more effective treatments for carcinoid, pancreatic, and related neuroendocrine cancers. Since its inception, CFCF has awarded over ten million dollars in research grants to leading scientists at renowned research institutions. Along with its primary focus on research, CFCF is committed to supporting patients, families, friends and caregivers by providing them with complete and up-to-date information and educational conferences at leading centers around the country.
3. What services do you provide for patients? For researchers? For the general public?
Patients: Access to our monthly eUpdate and website, which contains information on the disease and on doctors and helps to answer any questions they may have. Our social media channels also offer the latest news and updates about neuroendocrine cancer. We also offer patient and caregiver educational conferences on a regular basis, which help patients understand the latest research in neuroendocrine cancer.
Researchers: We offer researchers a number of funding opportunities every year. These can be given as an award from CFCF after proposals are reviewed by a peer-review committee, or as a grant through the American Association of Cancer Research, whom we partner with to support innovative research.
General Public: Through our website, eUpdate, social media, and events, the general public can learn more about neuroendocrine cancer and how they can support research to help develop a cure or more effective treatments.
4. How much money did you raise last year? What was it spent on?
in 2013 we were fortunate enough to raise over $2.4 million in gifts and pledges. We keep our operations lean so that virtually all of the individual donations we receive go to funding the research for better treatments and cures of NET Cancers. The grants and sponsorships we receive from pharma support our information and education functions, allowing us to put on patient/family conferences without charge to attendees. And the generosity of our Board of Directors covers our non-program (i.e. other than research and education) operational expenses.
5. What is the most promising thing you see going on in NET cancer today? What are you excited about?
We think the most promising thing going on in NET cancer is immunotherapy. We are most excited about embarking on a major research initiative in immunotherapy. A treatment that uses the body’s own immune system to fight cancer, immunotherapy has led to dramatic results for some patients with other forms of cancer. We are eager to test the potential of immune-based therapy to provide similar breakthroughs for patients with neuroendocrine cancer and have brought leading immunotherapy experts on board to do so. Through a clinical trial and the development of breakthrough immunotherapy technology, we will be focusing on the effects of immunotherapy for carcinoid and pancreatic neuroendocrine tumors. To learn more, visit http://www.caringforcarcinoid.org/sites/default/files/images/Immunotherapy%20One%20Pager.pdf
6. What are the prospects for finding a cure for carcinoid/NETs? What would speed up the process?
There is never any reliable way to predict the pace or the results of the research process. That said, immunotherapy is probably the most exciting thing to come along in the last decade or more. Given the dramatic results it has had for some patients with other cancers, we are excited and hopeful that combining leading immunotherapy experts with dedicated neuroendocrine specialists may have some real breakthroughs that could “change the standard of care,” according to one of those immunotherapy experts.
We should also note that we have experienced a quickening of the pace of discoveries on the genetic and “epigenetic” research front over the last few years, opening doors that may lead to better treatments. We have also significantly expanded our clinical/”translational” portfolio with our first clinical trial (a potentially safer and more effective approach to Galium-68 imaging and PRRT treatment) and are testing several new treatments in centers across the country.
7. If people want to donate to your foundation, how do they do that?
2:21
You begin to look like you’ve had enough reading for a few minutes. So here’s a video about why I’m in this fight to stay.
https://www.youtube.com/watch?v=-GKvH8MxfYM
3:09 p.m.
Today is the 47 month anniversary of Jane’s death. Normally, I would spend a portion of today at her grave but, as we used to say to each other, “Our work is with the living.” But very month, I write a special piece about my progress since her death and try to put her death in a larger perspective. That piece was published separately from what is here, and I would encourage you to read it during this hour of the mediathon.
Our next patient piece is by Kara Daniels was diagnosed about a year before Jane was. She is a member of our Marathon Walk team and raised over $2700 for that effort. She was one of eight Pacesetters on our team, which raised $66,770 this year. She walked five miles, despite her cancer. Never say zebras aren’t tough.
Kara’s Story
When I agreed to write about my carcinoid experience, I thought this was going to be a lot easier than it actually is. It’s a journey that has taken me through 27 CT scans and over 70 chemotherapy treatments, not to mention ultrasounds of my neck and an upper endoscopy “just to be sure.” It took me a long time to actually say that I have cancer and an even longer time to say that I am receiving chemotherapy.
I had never even heard of carcinoid or neuroendocrine cancer when I was diagnosed a little over 5 years ago.
Although at this point I can’t recall how long I actually had symptoms for, I feel very fortunate in the fact that once my symptoms persisted on a daily basis, I was diagnosed and began receiving treatment all within 2 months. I was diagnosed with metastatic carcinoid in September 2009 after a two-month workup for Crohn’s disease, Irritable bowel syndrome and Celiac disease. By the time I was diagnosed, I had diffuse metastasis in my abdomen, in addition to metastasis to my liver, outside my right lung and to my pelvis. I have been on a clinical trial for the past four and a half years, for which I go to Dana-Farber every three weeks for blood work, to see my physician or NP and to receive chemotherapy.
I have just recently read that carcinoid is considered the “Look good cancer.” Shortly after I was diagnosed, a friend of mine told me she overheard someone talking one day about the fact that I have cancer. This other person proceeded to say “There’s nothing wrong with Kara, she didn’t lose her hair.” No, I haven’t lost my hair, and if you didn’t know me, you would never know I have cancer. I have continued to work through all of this and lead a very active life. It is the internal struggle that people don’t see.
Living with the side effects and lifelong treatment of carcinoid does provide many physical and emotional challenges. There are days when I really don’t have a lot of energy and sometimes it takes me longer to do certain things than it used to but still, I try to not let that stop me. A very dear friend of mine passed away the beginning of the year from cancer. She was a great support to me and told me when I was first diagnosed that it was OK to have a pity party every now and then, which yes, I do.
I am fortunate to have the support of my family and close friends. I have to admit though, that there are times when I feel even my friends do not understand how I feel because I “don’t look or act sick.” People who would call me before my treatment to wish me luck or contact me afterward to see how everything went no longer really do that. That is the hardest aspect for me to deal with.
It is very difficult for me to live with the uncertainty of my cancer’s progression. I hold my breath every ten weeks when I get my CT scan results. I wonder every Christmas when I decorate the tree if this will be the last time I’ll ever do this. I hope to be able to see my son graduate from high school, college and to get married but there is a realization of eventually what will happen.
Each day now offers a new challenge and I have learned to realize the tough times for what they are and have learned what truly is important. There is a quote that says “You never know how strong you are until being strong is the only choice you have.” I can’t change the cards that were dealt to me but, in some way, I feel I have become a stronger person because of it.
–Kara Daniels
3:54
One of the underlying themes of this year’s NET Cancer Day is “Time to Diagnosis.” Patients are posting pictures of themselves with signs that say how many years they went before they got the right diagnosis. Some are even listing the things they were told they had before someone got it right.
The average time to diagnosis is 5-7 years from the first symptoms with three incorrect diagnoses coming before the right one.
But those are the averages–and the average is not always the reality. If they asked Jane to hold a sign up, hers would say 30 years. And she had so many wrong diagnoses we honestly lost track. She had at least three before I even met her, ending with the doctor who told her it was “All in her head.”
I wrote the pamphlet “Is it IBS? Or is it NET Cancer” two weeks after Jane’s death. I was in an airplane at 30,000 feet on my way to spend Christmas with my family in Seattle. My brother David thought it would be bad for me to spend the holiday alone in New England. To be honest, I’m not sure Seattle was any better for me than home would have been.
There is a picture of our family taken there on Christmas night. I don’t recognize my face in that picture–or my body. I look like an angry specter floating in the background. The only good thing, in many respects, was that it gave my father and I an opportunity to mend the fences that had come up between us decades before. My mother had died barely ten months before Jane. We finally had something in common: our grief over the loss of the people who had been the other half of our souls.
My father gave me the night Jane died the only phrase that helped me make sense of what I was feeling. “And now you know,” he said across the 3000 miles of air and space, “that there is nothing anyone can say that will make this feel any better.”
Some people may find that cruel. But it is the truth, at least for me, about the power of this kind of loss. Jane and I always dealt in truth–even when that truth was painful. My father dealt with life the same way.
But i was at 30,000 feet and seething with the dull anger only grief creates. More than anything else, ignorance had killed my wife. IBS is not a diagnosis, one of my doctors once told me. It is what we call it when you have a digestive problem in your belly and we can’t figure out what it is. It makes everyone feel better.
“And then,” I said to myself on that airplane, “it kills you.”
How many times had doctors told Jane she had IBS, I wondered? I knew I’d heard it at least three times in the years we were married, knew she’d heard it at least once before we even met. When she started flushing in her mid-30s, they told her it was early onset menopause. She passed out because she had low blood pressure. She dehydrated easily because she was too athletic and had the body fat of an elite athlete. She had insomnia because she was nerved up by the schedule she was teaching–AP Bio, Honor Chemistry, and Honors Physics all at the same time. If her feet swelled, it was because she was on her feet on a concrete floor all day in the lab and classroom. If she felt light-headed, it was anxiety.
This is what happens when we look at one symptom at a time–as so many doctors do. They are specialists and try to fit everything into their specialty. Rarely do any of them step back and look at the big picture of the whole patient. Her last doctor finally put all the pieces together, but by then it was 29 years too late.
So I wrote the pamphlet, hoping it would leave people a little less ignorant, would give doctors a better shot at seeing the big picture. I had Dr. Jennifer Chan, Jane’s oncologist comb through it to make sure I’d said the right things in the right ways. It was a small cry in the dark–a single match–but it was what I had to work with. I’m not a doctor, but I know how to read and put words together. I keep hoping that will be enough to make a difference.
I say to people over and over again, “IBS is not a diagnosis. Keep looking until you find out exactly what is causing the problem. What you don’t know can kill you.”
It’s what today is about. For the last 10.5 hours, I haven’t really brought up the topic of money. Ron talks about how to donate to Caring for Carcinoid. there was a sentence or two earlier about it, but I haven’t been playing Jerry Lewis today. I’m going to for an hour later tonight. But what really matters to me is getting the word out. Ignorance kills. Knowledge gives people a fighting chance.
At the craft fair I was at this weekend, someone asked how we had done on the monetary side. I told them we did OK–but that the real point of being there was to talk to people about NET cancer. If we reach just 10 people in five hours, that can make a difference.
My question is, am I reaching you today? Are you learning something that may help keep you or someone you love safer than they might otherwise have been? A million dollar donation would be nice–but what really matters is whether or not we are giving someone a chance who didn’t have one before.
5:20
I have no idea where the last hour has gone. But I think it’s time for a couple of videos on why NET Cancer Day matters.
https://www.youtube.com/watch?v=QsQejUYM9g4
5:42
When you are facing a disease with no cure and that most doctors have never heard of–let alone civilians–you know you are in trouble. So you go looking for information and support wherever you can find it.
Some of the best support you can get is from people who have been through it all ahead of you. Many patients have taken to the Internet and blogging to alleviate the frustration of dealing with NET cancer. By writing their experiences down they get a release from the anger, fear, and despair of dealing with a disease where a well-educated patient can know more than the primary care physician they are dealing with.
Of course anything you find on the Internet you need to take with a pound of salt–at a minimum. We’ve all seen the “studies” that claim marijuana will cure every form of cancer known to humankind, restore your hair if you’re bald, and cure the common cold. I won’t deny that there have been some rigorous studies done on some things that look interesting. But very little of it is peer-reviewed science. Once upon a time, people claimed taking mercury would cure venereal disease. And don’t get me started about the political lies spread over this new frontier.
But when people tell their real stories about their encounters with the disease they can have a cathartic effect on others with the disease. As Jen Chan said earlier today, one of the real difficulties of NET cancer is the emotional toll it can take on not only the patient but their friends and families. Spyder Robinson, a writer I admire, talks in some of his stories about the power of a single idea to bring healing: “Shared joy is multiplied; shared sorrow is lessened.”
There are some treatment gems that come out of these blogs periodically. But I would always want to check for the science behind those ideas before I would pursue any of them. And that is generally the least important thing about them.
Danica Corey writes a blog about her encounters with NET cancer on a regular basis. She has two daughters about twelve years apart. This entry recounts the beginning of her journey with NET cancer.
My story begins in 2006 (January I think). I had fired my most recent doctor and was going in to see a new one. At this point I had seen seven doctors in four years and I was ready to give up. Before I walked into this new doctor’s office I had decided this would be the last one. When she walked into the office–and before she could say anything–I told her, “I have seen seven doctors in the past four years and all of them have told me there was nothing wrong with me and it was all in my head. If you don’t want a challenge, I will walk out of here and you will never see me again.”
This doctor sat down and spent the next 45 minutes with me and came up with a plan. First she ran blood work–more blood work and labs than I had ever had prior. When most of that came back normal, she started looking elsewhere. She sent me to specialist after specialist.
Nothing . . .
She called me one day and told me to go get a chest x-ray as she thought maybe I had inflammation around the heart. Before I even got home that day she called me on my cell phone and told me she wanted to see me in her office the next day. She couldn’t say anything over the phone. When I went to her office she told me they saw a mass in my right lung and she was sending me to a pulmonologist to have it biopsied. Things went really fast after that. When I had the biopsy done I ended up having to stay overnight because they collapsed my lung.
So then I waited for results…
A few weeks later I got a phone call from the pulmonologist while I was working and at the front desk. He starts out by telling me they figured out what it was. OK…fine…then he goes on to say well you have cancer. Its called carcinoid. It’s a 2 cm tumor in your lung. He said he didn’t know that much about it, but he gave me the spelling and told me to look it up.
REALLY!!
I was stunned and a little freaked out. He told me this over the phone while I was working.
I walked into my boss’s office and told her. She sent me home for the day. I got to the car and called my husband. He was a little more than upset that I was 1) told over the phone and 2) while I was working. My husband told me to stay there and that he was coming to get me.
I remember almost nothing of the next few days. I was stunned and overwhelmed. Other than my husband I had no one to talk to and no one called.
I did what I was told and researched it. I found out a whole lot of information and when I went in to see the oncologist, I showed him my research. He wasn’t as impressed as I thought he would be. He outright yelled at me for trying to do his job. I was stunned and so was my husband, who looked as though he was going to punch out the doctor (and I didn’t blame him). Then he told me I had to have surgery or I would die. He said he was referring me to a surgeon. Then he got up and walked out. My husband and I were left there just looking at one another. I don’t think we spoke all the way home. Not because we were mad at each other, but because we were outright stunned.
There was one thing I had done a few months before all of this happened and I’m sure happy that I did. To this day I still have no idea why I did it. An AFLAC representative came in to our office selling insurance and I ended up getting a cancer policy that day. I just had a very strong feeling I needed to do this. Of course my husband thought I was off my rocker but it was only a few dollars a paycheck. I almost stopped it. I didn’t know at the time that I would actually need and use it.
I don’t remember much between the times of seeing the outraged oncologist until I met with the surgeon. I do, however, remember that morning when we were going to see the surgeon. I told Mark that morning that if I did not like the surgeon I would walk out and not return. When he walked into the room, I was put at ease. He was the kindest person and listened to me. I felt very good about all of it when we walked out.
The next few weeks and months were filled with tests and scans. I went in for surgery on May 31, 2006. Everything seemed to go according to plan. The surgeon went in and removed the lower lobe of my right lung via thoracotomy. Towards the end of my surgery, something went wrong and the anesthesia started to pool in my hand and I went into carcinoid crisis. The nurse went out to talk to my mom and my husband and mentioned something to that affect and when she realized no one had mentioned it she clammed up. To this day we still don’t know what happened. I was wheeled into recovery and I was in ICU for 2 days. It took twelve hours for me to come around after surgery. No one could, or would, explain why or what happened.
I spent the next week in the hospital. I went back in to the oncologist a few weeks later and he pronounced me cured. That was not the end of it but rather the beginning.
I went back to work after a few months, but became very sick again within a few weeks of returning to work. Ended up I went into my Dr.’s office and she sent me over to the hospital for emergency gallbladder surgery. It ended up I was admitted for a few days before I could have the surgery because my potassium was so low. They had to do infusions before they could do any surgery. It took them two days before they could stabilize me enough to have surgery. Then I went into carcinoid crisis during surgery again because they did not have the sandostatin drip on hand. I recovered from this setback and returned to work again.
Later that year, in December, I returned from a work Christmas Party to my phone ringing at home. I thought it was a strange time for my doctor’s office to be calling me–after all it was after 6 pm. The nurse on the phone told me I had to come in right away. I had been in the office the day prior and had routine blood work done (well I thought it was routine). This nurse went on to tell me because of my condition it was urgent I go in for a potassium infusion or I could go into cardiac arrest. I asked her what she meant by “My condition.”
She said, “Well you know you are pregnant right?”
I told her she was crazy because they told me I would not be able to get pregnant and I went on to tell her she had the wrong person. I am certain it took her ten minutes to convince me she did have the right person. I was in shock and terrified. In the weeks prior, I had been through lots of testing in the nuclear medicine department. Not only that, but I had had CTs, MRIs and x-rays. I could only imagine what all this must have done to the life growing inside me.
Come to find out I had had an octreotide scan two weeks prior and they had seen something pop up on the test that kind of surprised them. In the report, it stated that there was a hot spot near or in the uterus and I needed to see my ObGyn for follow up. At that point my doctor had been contacted and asked me to go in for blood work. I thought it was routine, like I said. Turned out she ran a pregnancy test and that little hot spot they saw on the scan was my little Patty.
Once again, my husband and I were completely overwhelmed with doctor appointments. Early on, we were advised to terminate the pregnancy because they had no idea what all the radiation might have done to the baby. One of my first appointments we went in was parade of doctors coming in and out of the office. I think all in all there were twelve doctors I saw that day. I felt like an experiment or some kind of carnival freak. I even had more than one doctor yell at me for being so careless and getting pregnant in the first place. It was not like I meant for that to happen–after all we were using birth control.
The pregnancy was compounded with difficulties because of the fact I was still recovering from lung surgery. It was a miserable eight months. I was so sick most of the time. I was suffering from carcinoid syndrome and was constantly in the doctor’s office getting infusions of potassium and IV fluids because of the persistent diarrhea and vomiting.
I had hoped to deliver her natural, but because of my condition and because they really did not know how my body would respond to the stress of natural childbirth, they decided to do C-section. The surgery did not go as planned, because at the time they had considered me cured and did not have a Sandostatin® drip on hand. My blood pressure dropped and they had to call for a crash cart. Things turned out ok after that and my little Patty was born. She was very small at 5 pounds 10 ounces, and she was a little early at 34 weeks gestation.
It took another year of suffering with carcinoid syndrome symptoms before I convinced my doctor to do a 5-HIAA test and they could see something was not right. I was put on sub-Q injections of octreotide and I did these myself for another year. I did these until we moved in 2009, when I was finally put on the Sandostatin LAR® injections.
I have never really stopped to think about my diagnosis. As far as coping–I don’t really. I don’t let myself get stuck in my head thinking about it. I take everything day-by-day. I have a hard time looking at myself as being sick. I have always taken care of everyone else and have always been the strong one. I have hidden from everyone how much I really suffer with all of this. I have always played everything down as to not let anyone really know what is going on. I don’t think even our families really understand. Recently it has become difficult to hide it and I have had to come to terms with it all. I still don’t ask for help and I think that bothers people (including my husband) but I am learning slowly. I have never found it easy to deal with my own problems.
My explanation to myself has been that because they have not found any more tumors maybe it is not so bad. I know this is not true because I live with the symptoms of the syndrome every day. Sometimes it is easier not to think about it and just push it aside and take care of my family.
Up until 2011 it was easier to just not say much to people. I was able to take care of most things on my own. Then, around November, I think I started to get very ill once again. I was hospitalized with what they called Ileus. My insides just kind of shut down. I had to have an NG tube put in for a few days. What a nightmare that winter was. I was in and out of the hospital three different times and have never quite been the same since. I now have to rely on people more. I have not been able to drive now for a couple of years, due to some vision problems I have, as well as the fact my reflexes, because of a movement disorder, just are not what they should be. I have been advised not to drive at all.
This has completely changed our life. It makes it very difficult for me to do what I really want to do, so I get very frustrated at times. I know it is hard on my husband because he is back in school getting his degree and is really trying to make things better for us. He tries to spread his time between school, taking care of me and helping with Patty (our youngest, five). Shann (our oldest, 17) is almost grown and he runs her around where she needs to go. He also helps with most of the housework, too. I feel bad because I used to do most of the housework and I took care of the girls. Now I am unable to do most of what I use to do, so now I do what I can to help out.
Our youngest is a huge challenge for us. She was diagnosed on the autism spectrum, is epileptic, and has moderate hypotonia (which used to be called floppy baby syndrome characterized by abnormal and reduced muscle tone, along with muscle weakness). She was born fairly small and has had challenges since birth. At 18 months she had two grand mall seizures that changed everything. She is now five years-old and thriving in kindergarten. She still has a long road ahead of her with many challenges, but she has a good chance at a really good life with lots of support.
My husband and I have no real plans. I think we have not wanted to see it or really face it head on. We have started talking more about it recently and really should start making some sort of plans. Just talking about it right now is a good start I think. I know I still have a little time left (or so I hope–no one ever really knows how much time they have, really). I have gotten really good at not facing my future. It is hard for anyone, but when you have a special needs child who will need support most of her life, it is twice as hard, I think. I know there will be many who will be able to step in for me, and my husband will be there for her, as well as her big sister (who I know will always be there for her little sister). However, as a mom, I want to be there for both my girls.
Like I said before, we do not know how much time we have left on this earth. We just have to do the best we can with what we have. I just hope it will be enough–and I hope my girls and my husband always know, no matter what happens, I love them with all my heart.
–Danica Corey
If you’d like to read more of Danica’s story, she suggests the following posts in the order presented here:. Or you can go to her blog at http://mycornerofthepond.wordpress.com
http://mycornerofthepond.wordpress.com/2011/07/23/just-a-bad-week/
http://mycornerofthepond.wordpress.com/2011/08/02/follow-up-at-doctors-office-more-realizations/
http://mycornerofthepond.wordpress.com/2011/10/23/will-i-see-her-grow-up/
http://mycornerofthepond.wordpress.com/2012/01/27/hard-questions-difficult-answers/
http://mycornerofthepond.wordpress.com/2013/01/22/no-i-did-not-fall-off-the-face-of-the-earth/
http://mycornerofthepond.wordpress.com/2013/07/28/we-finally-landed/
http://mycornerofthepond.wordpress.com/2013/09/30/giving-up-is-not-an-option/
http://mycornerofthepond.wordpress.com/2013/11/06/when-doctors-and-insurance-comp-take-away-your-cancer-treatments/
http://mycornerofthepond.wordpress.com/2013/12/23/a-renewed-hope-just-in-time-for-christmas/
6:42
If you found Danica’s blog interesting, you might also try these:
6:46
The time has come to talk about money. It is not a subject I really want to broach because I hate asking people to make donations. But the unvarnished truth is we can’t count on big pharma or the government for money. And research and trials cost money–bundles of it.
I’ll also be the first to admit there are alleged cancer charities out there that take in substantial sums of money, very little of which ends up doing much more than paying administrative salaries. I think that’s criminal and it makes me crazy.
The good news is I haven’t found a NET cancer charity that does that. Those I’ve worked with run extremely lean organizations and are quite transparent about where the money goes. Anyone who raises more than $500,00o in a year has to file a Form 990 with the federal government–and those are public records anyone can access. Both the Caring for Carcinoid Foundation and the Carcinoid Cancer Foundation link to their Form 990 on their websites. You can see exactly what they take in and what they pay out to whom.
Walking with Jane is not big enough to have to meet that requirement. I can tell you that no one here gets paid a nickel. I am a retired teacher. I live frugally so that I can donate as much of my income as I can to NET cancer research and awareness. Every penny we raise goes to the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute or to the American Cancer Society Relay for Life of Greater Fall River. Donors determine where we will send the money they donate. Currently, DFCI gets about $8 for every $1 that goes to ACS. We also give a scholarship each year to a graduating Westport High School senior who is entering either medicine or science teaching. In addition, we give a scholarship at Jane’s alma mater, Bridgewater State University. I personally make donations to CFCF and CCF each year, in addition to donations to the Program in Neuroendocrine Cancer through the Walking with Jane Dybowski Fund for Neuroendocrine Cancer.
In short, I put my money where my mouth is. I want carcinoid/NETs dead–and if that means I buy the cheapest, most economical–and most reliable–car I can find and drive it for 12 years, I do that so that I can bring about the death of the cancer that killed my wife.
Some folks think cancer foundations need to do more to lobby the Congress about cancer funding. But the way the laws are written, it is illegal for any of us who are 501 (c) (3) charitable organizations to do so. When I make lobbying trips, I do so as an individual–not as the president of Walking with Jane.
Here’s the awful truth though: what we spend annually on NET cancer does not amount to a rounding error on what we spend on lung cancer or breast cancer or prostate cancer or colon cancer. Aside from the contributions of drug companies, we spend less than $30 per year per patient–and even with what the drug companies kick in, we spend less than $60 per patient.
There are lots of things about ACS I don’t particularly like. we don’t get much respect there. But they do kick in about $1 million every year for NET cancer research. That doesn’t sound like much, but it is at least 10 percent–and maybe more–of what gets spent on carcinoid/NETs research in this country. We can’t afford to pretend that money doesn’t exist.
So here I am with my tin cup. I’m not going to ask you to make a donation to Walking with Jane. But I do know both CFCF and CCF have projects that need financial support. I know the Program in Neuroendocrine and Carcinoid tumors at DFCI has projects worthy of your support. And I know my personal support of all three is going to be smaller than usual this year because of multiple gum surgeries I’ve had to go through–and that I’m not done with yet.
If you have some money and are looking for somewhere to ‘invest” it, these organizations will make a difference–as will any of the major NET cancer centers in the US.
7:43
While we’re on the subject of money, in less than two weeks, registration will open for next year’s Boston Marathon Jimmy Fund Walk. Our team–which will walk under a new name that is still to be decided–will be the first Walk team ever with it’s own officially recognized FB page. I spent part of the weekend piecing together a prototype of the page so we could see what it would look like with the official Jimmy Fund logo. You can look at the prototype at https://www.facebook.com/pages/Allies-against-Carcinets-Marathon-Walk-Team/803441499702633?ref=hl.
But don’t bother liking the page. It isn’t right yet–and any name change means I’ll have to start the process from scratch. But do let me know what you think.
By the way, this year’s caring for Carcinoid Walking with Jane and Hank and Anne team–now you know why we need a name change–raised $66,770.28, all of which goes to carcinoid/NETs research.
8:07
We have about four hours to go here on this year’s Social Mediathon. I’m running out of steam a little bit–but I said I’d run until midnight and I meant it. But I could use a little help at this stage. Ive posted, between the main body here and places I’ve sent you off to look at, close to 20,00 words.
The problem is, aside from some quick “I like this” kind of comments, there hasn’t been much reaction from any of the over 2500 people who have looked in over the course of the day. It’s tough working in this degree of vacuum. I’ve got plenty more to talk about, but at this point I’d like to know where you’d like this conversation to go.
So what are your thoughts?
8:26
Since I brought up the Program in Neuroendocrine and Carcinoid Tumors, I suppose I should let the guy in charge of it talk about it.
https://www.youtube.com/watch?v=UbRu5rTNu08
8:40
I’ve just spent a few minutes scrolling through Facebook. Frankly, it could be any other day of the year for the most part. There are a few extra zebra pictures that are outnumbered by the cat and dog pictures and the cute kid pictures. There’s the usual set of posts in the run-up to Veterans’ Day. Very few people have done anything to their profile pics to show any kind of support for the cancer today is about.
I wish I could say I was surprised. I can’t. For most people, cancer was last month–if they think about it at all. Cancer is one of those things we don’t like to think about–something we can fight by buying the right blender or the right can of soup in the right month. The rest of the time we put it on a shelf and try not to think about it.
Today, I got smacked by my third and fourth new cancer cases of the last week. I spent my day helping them while trying to help all these other people I know who have the same cancer Jane did. It’s hard to connect to the political posts and the cats and the cute kids and the invitations to play games I have no interest in even when I’m feeling upbeat and positive.
I understand why it is so hard to get people to pay attention. They have their own crises in their own lives. I saw a post from someone yesterday talking about how they were too rich for food stamps but too poor to be able to afford food through the end of the month. I’ve been there–may some day be back there since there is no way my pension will keep up with inflation. Our government remains as dysfunctional as ever for the common people–though it seems to work just fine if you are a corporation or independently wealthy.
But cancer… I’ve seen too many people die from it–just as I’ve seen too many people in poverty. I’m not talking about the clean deaths you see on TV. I’m not talking about the humorous poverty of Two Broke Girls. I’m talking about the real thing–in both cases. And when you’ve seen either one for real, lived through either one, it changes who you are and how you perceive the world around you. And that is true of the real anything: war or pain or loss…
I wish I could get angry about today–about all the people who just kept on as though today were any other day. I can’t. I know too well that they have their own tragedies they are trying to work through on their own.
They, too, have a rare disease that may not be as rare as they think. They, too, are zebras. They just belong to a different herd.
9:28
Pamela ter Gast is a patient at DFCI. She has been over nearly every hurdle a zebra can encounter. Yet she remains incredibly upbeat–as this post will attest.
Just my Saturday thought….
We’ve been dealing with this for enough years to be grateful for every new day. I’ve had days with such indescribable pain that I literally didn’t MOVE for fear a muscle somewhere would scream.. We’ve lain in each others arms, so indescribably sad and weeping, because they thought nothing more could be done (which also gave me feeling of rebellion and resistance I’ve never known before)
Every possible scan, biopsy blah blah , but not the Gallium 68. I just show up for everything, which has become routine, except for the time when I didn’t get to go home for a month plus, because I actually WAS dying…
We’re on first name status with Drs, nurses AND the best lunch lady in the whole wide world.
Now here we go again… Am I happy about it? Hell no! I am tired…I’m sick of this (no pun intended ) but I also want to be 28 years young again and that’s not going to happen either! My life is beautiful..my poor body is exhausted, so I take naps…and watch Hallmark movies… When I get sad I cry, I also laugh til I almost pee my pants…I go “retail therapying” with my daughter and guess what….I’ve NEVER charged outrageously or maxed out anything…you know why? BECAUSE I AM ALIVE AND PLAN ON KEEPING IT THAT WAY!
Why am I writing this? To give HOPE ,even if it’s just 1 person… Yes, we’re losing ZEBRAS but every day people are dying. We ZEBRAS are front runners, the pioneers of sorts and we have a growing community.
We find each other and are here to give each other support, because, even though this cancer is like an air puppet, we’re all in the same boat! Look at and listen to “Sunny” Susan Anderson. How many years has she been dealing with this and being an activist?
This morning I woke with the sun in my face… NO ONE can take that away from me…and every happy moment YOU have is yours to relish and enjoy!
–Pamela ter Gast
9:51
Time to do some housekeeping and make a final challenge or two.
We have had 475 views so far today on walkingwithjane.org. That is 305 more than last year and 64 short of tying the all time record. We have two hours to come up with those views. It would be nice to get there.
In addition, we have nearly 3000 views on Facebook so far today and another 1000 on Google+. People have been retweeting madly on Twitter for most of the day–but I have no reliable metrics for what happened there. I do know we had over 50 retweets during the day.
We have had over 700 views on our YouTube Channel and added an additional dozen subscribers during the day.
We didn’t do badly. I hope everyone has learned a lot so far today–and that you’ll learn a few more things before midnight EST.
10:19
Jillian was diagnosed with carcinoid/NETs at 29 years old. At the tome of her diagnosis, it had already spread to her liver. As she says, she has a lot at stake
I remember my first flush. It came immediately after eating breakfast one morning – the same breakfast I’d eaten for years. It was so jolting that I responded audibly to it. It was a hot, uncomfortable feeling accompanied by a raised heart rate, but with no sweat. It was such a sudden change in my body. One day the flushes weren’t there, and then suddenly, I couldn’t take even a mouthful of food without that terrible feeling.
Carcinoid flushing is caused by the five Es – epinephrine, eating, ethanol, emotions, and exercise.
As a woman, experiencing what I thought were hot flashes, I immediately went to a gynecologist. The doctor dismissed me and told me to drink more orange juice.
I was lucky in that it took me less than six months to get a diagnosis, but I had to fight hard for it just the same. I saw a variety of doctors in two different states before I heard the term carcinoid cancer for the first time in 2008. Despite test results suggesting that I had carcinoid syndrome, my doctors were still unwilling to believe it. They said I didn’t fit the profile and that carcinoid cancer was so rare that most oncologists would never diagnose even a single case. No one believed I had it until I had my first CT scan clearly showed liver metastases. I got the CT results the same week as my first wedding anniversary. I was 29.
I have since made a point to specifically tell gynecologists about carcinoid syndrome because I believe that with flushing as a symptom, most women will visit their ob/gyn first. I urge you to do the same.
–Jillian
10:38
What is the importance of a single life?
Jane and I did something most people would find peculiar on our wedding night. We watched Star Trek II: The Wrath of Kahn. In retrospect, it seems a bit strange even to me. But we both loved Star Trek–and it was her idea, not mine. One of the opening scenes shows a Starfleet Cadet facing a no-win scenario in a simulator. Kirk does not believe in no-win scenarios. He is the only person ever to have beaten the simulator on that test. He cheated by reprogramming the computer.
Neither Jane nor I believed in no-win scenarios. All we asked for was a fighting chance–and we spent our lives turning no chance into a fighting chance.
I still do.
When Jane was diagnosed with this cancer no one had ever heard of we immediately began working to turn the no-chance her first oncologist believed she had into a fighting chance. The first step was to fire him and try the person we were originally scheduled to see. That woman had the same attitude. She sent us to Dana-Farber and Jen Chan. together,we pieced together a plan that would create a fighting chance.
Having a fighting chance doesn’t mean you always win. that’s what happens to Spock at the end of The Wrath of Kahn: he recognizes that in order to create a fighting chance for his crew mates, he has to give up his own life. “The needs of the many,” he says, “Outweighs the needs of the few–or the one.”
Long before we met, Jane and I had adopted that as another part of our core belief system. She kept teaching long after she should have been in a doctor’s office because her students needed her to be there. She insisted, even after her diagnosis, that I keep working because our students needed at least one of us–there were some for whom we were the parental figures they did not really have. I went back to work two days after her funeral for the same reason.
I wonder sometimes, if Jane knew what she was setting in motion in those last months–knew that because of what they learned from her, others would live. I wonder if she knew through the post operative haze the impact she was having on the doctors and nurses who worked with her. I think she may have known–may have known that every time she woke up she was pushing them to match her heroism.
She changed my life every day from the day I met her. She would tell you I changed hers as well. And we changed the lives of many students over the years. Why would that stop when she was dying?
It didn’t. But I will never know how much of what she did in the last days of her life was as intentional as the way she lived her rest of her life.
We said we would find a way to beat NET cancer. She said it on the day she was diagnosed. And we both vowed that we would beat it together–just as we had fought every other battle life had presented us.
How much does a single life matter? Sometimes it makes all the difference in the world.
11:30
walkingwithjane.org has had visitors from 11 different countries today. Barring a last minute surge, we will fall just short of our best day ever on the website. We’ve seen near or record numbers on all our platforms.
But records matter far less than whether we have reached people with the efforts of today. Did we save someone’s life today? Will someone take home a bit of knowledge or inspiration that will make a difference in their lives–and a difference in the lives of those around them.
Periodically, I run into students who tell me how much they loved my class. I always ask them the same questions: Did you learn anything useful from it? Did it make a real difference in your life? That is the real test of anything for value.
We have a half an hour left before i close up shop for the night.Please spend some time reflecting on all you have read and seen to day. How will those experiences shape the you that is becoming? How will they change how you react to not only those who have NETs, but to those who have troubles of their own?
Be kind to everyone, for you never know the burdens they are carrying.
11:40
My thanks to everyone who helped make today possible,especially to those of you who wrote things and made videos and shared pictures. You made what could have been a difficult day bearable.
My thanks, as well, to those of you who hung out with us all day, commenting on posts, pushing like buttons and sharing posts. It is a lot easier to do this when you know people are reading, listening and watching.
We will do a 12 hour general cancer Social Mediathon in the spring and–the gods willing and the creek don’t rise–another one of these next November 10.
For those of you in Texas and Massachusetts, remember, we have tyne entire month to work with.
But I’m taking tomorrow off–at least from this.
Midnight
Good night.
We have many problems with NET. Nobody knows about it or how to treat it; we have treatment options but some of the best ones are not available for lots of reasons; our major organizations exist mainly to perpetuate themselves. The twin evils of pharma and insurance literally hold the powers of life or death over us.Our biggest problem is we have no voice. Nobody speaks for us in state or national arenas. Any gains we make will ONLY happen when patients demand to be heard. For that,you don’t need money. You need dedication, organization and a soapbox. Thanks, Mr, Proudfoot, for providing a place to speak out.
Lucy is right. We do need to develop a soap box or two to get people to understand what this cancer is and why it matters. I may disagree with her about the money side of things–research is going to cost more than a little since big pharma rarely supports the basic research we need to have done to find a cure. They’ll support drug trials when they are fairly sure there is going to be a profit in it–but not much before that.
Government grants face the same problem: show us that you are fairly certain to produce something we can immediately use and we might show you the money. Ninety-five percent of solid research proposals never find funding. So money is going to matter.
But if no one knows or cares what patients are looking at–outside of the patients, their families and a relative handful of doctors and researchers–then nothing is going to change. Today is about raising awareness.
I hadn’t planned to send you off to read this next piece until this afternoon. But it fits in here perfectly.
There is no cure for NET cancers that are not detected very early–so early that they are discovered by accident. I encountered a young woman in 2011 who is one of the lucky ones. She went to the hospital for an appendectomy. During the operation, they discovered a NET in her appendix. It was the only one there and they took it out. There’s a good chance she won’t have to deal with NET cancer again.
But most patients aren’t so lucky. This spring I got a note from a young woman in Canada. Her cancer was pretty advanced. She didn’t want information about potential cures. She wanted to know how to prepare her husband for her death. I wrote this piece in response about Jane’s last months and how we prepared for her death.
9:13 a.m.
Looking at the analytics, we currently have an audience of over 300 people–not bad for just after 9 a.m.
But this is supposed to be an interactive project. Last week, I asked people on Facebook to replace their profile picture with something Zebra for today. That does not seem to be happening in my neck of the woods–at least not yet.
If you’d like to join the zebra herd for the day, go to netcancerday.org and download their zebra ribbon. Then update your FB page by replacing your current profile with it. Thank you.
9:24
I have to go off for a while. An emergency has come up. I will be back as soon as I can.
10:41
Have I mentioned lately how much I hate FRACKING CANCER!
10:54
Dr. Jennifer Chan was Jane’s oncologist. She is the director of clinical trials for the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute in Boston. She also became a good friend to both Jane and me during Jane’s illness–and has remained a good friend to me since Jane’s death.
Jen is in clinic today but she did respond to some written questions I gave her about NETs and where we are on diagnosis, treatment and research. Because she is in clinic seeing patients today, she is not available for follow-up questions here.
Neuroendocrine tumors are a relatively rare and diverse form of cancer that arise from neuroendocrine cells that are located in multiple sites of the body, including the gastrointestinal tract, lung, and other organs. They are characterized by variable but often indolent (or slow-growing) behavior.
One important factor that can affect prognosis is tumor grade. Grade is an assessment of the tumor that takes into account markers of cell proliferation seen by the pathologist on a biopsy. Tumors can be categorized as low, intermediate, or high grade. Low-grade tumors are slow-growing, whereas high-grade tumors are faster-growing.
Neuroendocrine tumors are unique because of their ability to secrete hormones. Most neuroendocrine tumors are non-functional tumors, which means that they are not associated with symptoms from hormone secretion. However, some neuroendocrine tumors (10-30%) produce hormones. Symptoms that a patient experiences will depend on which hormone is produced.
Neuroendocrine tumors can be difficult to diagnose because many of the symptoms are non-specific and can be associated with many non-cancerous conditions. Because neuroendocrine tumors are relatively rare, a diagnosis of neuroendocrine tumor may not be considered.
Neuroendocrine tumors are also hard to diagnose because there is not a widely available screening test, such as mammogram for breast cancer or PSA blood test for prostate cancer.
Symptoms that should lead to consideration of a diagnosis of neuroendocrine tumor include unexplained flushing or diarrhea or unexplained symptoms that are associated with hormone-producing neuroendocrine tumors. Many patients may not have hormone-producing NETs; these tumors are often diagnosed during the evaluation of symptoms, including pain, related to the tumor.
Some patients with carcinoid syndrome can develop carcinoid heart disease. The heart valves, primarily those on the right side of the heart, can become thickened and work less well due to exposure to hormones such as serotonin. Heart failure can develop when the heart valves do not work well, and patients can experience leg swelling, shortness of breath, fatigue.
When neuroendocrine tumors are diagnosed at an early stage before spread has occurred, standard management includes surgery. For neuroendocrine tumors that are completely removed with surgery, the prognosis is good, and the surgery is often curative. Some smaller tumors can be removed with endoscopic techniques.
When disease is more advanced, the treatment approach is individualized to each patient and depends on many factors such as tumor grade and extent of disease, organ where the disease started, symptoms related to disease, and how much growth has occurred.
Prognosis will also vary from person to person and depends on factors related to the grade and biology of disease, extent of disease, and the health of each patient. Many patients with advanced low to intermediate-grade disease can live many years.
Regarding treatment options for patients with low to intermediate grade disease:
Treatment options can include systemic therapy, which is treatment that can reach and affect the whole body, or therapy that is directed specifically to where the tumors is located. Systemic therapy can be administered in a variety of ways, such as pills by mouth or injections given intravenously, intramuscularly, or under the skin.
For some patients, surgery to remove all or most sites of disease can be considered.
If surgery is not an option and there is limited disease without any disease-related symptoms, some patients may be candidates for close observation. This is the case since some patients with low-grade disease may have very slow growing disease that may not grow significantly for some time. Treatment can be started at the time of progression or development of symptoms.
For patients with symptoms related to hormone production, somatostatin analogs can help symptoms by reducing hormone production. The medications octreotide and lanreotide are examples of somatostatin analogs.
In addition to reducing hormone production, somatostatin analogs also have been shown to slow growth of advanced gastrointestinal and pancreatic neuroendocrine tumors. Somatostatin analogs are commonly used as an initial therapy for patients with advanced neuroendocrine tumors.
For patients with advanced pancreatic neuroendocrine tumors, systemic treatment options also include everolimus, sunitinib, and chemotherapy. Everolimus and sunitinib are two oral targeted therapies approved by the FDA for patients with advanced pancreatic NET; both have been shown to slow growth in pancreatic NET. Pancreatic NETs can also be sensitive to chemotherapy. Temozolomide and streptozocin are examples of chemotherapy drugs that are active against pancreatic NET.
For patients with predominantly liver metastases, treatment directed at the liver can be considered. Hepatic (liver)-directed therapies include surgery, hepatic artery embolization, or ablation.
We continue to study new therapies for patients with neuroendocrine tumors. Clinical trials investigating new therapies may be an option for some patients with advanced disease.
For patients with advanced high-grade, poorly differentiated neuroendocrine carcinomas, platinum-based chemotherapy is often used.
For some patients, there are no symptoms even when CT scans or MRIs show tumor growth.
For some patients, however, there may be development of symptoms such as fatigue, loss of appetite, weight loss, or pain. Some patients may experience an increase in hormone-related symptoms if there is an increase in hormone production that correlates with disease progression.
Disease progression can also be emotionally challenging. Depression might occur. Patients benefit from the support of family, friends and their health care team. The health care team can consist of many individuals, including oncologists, nurses, social workers, psychiatrists and therapists, and nutritionists.
From a patient standpoint, it can be challenging to find a team of health care providers with knowledge and expertise in managing NET. A multidisciplinary approach is critical to the care of patients NET since NETs are a diverse group of tumors, and our approach needs to be individualized. Depending on the situation, there may be a role for surgery, interventional radiology or nuclear medicine techniques, or medical therapy. When to start and how to sequence therapy may also need to be decided. These are complicated issues, and it is helpful to have multiple people thinking together about each patient.
From a medical standpoint, education and raising awareness about NET remains extremely important. With early diagnosis and intervention, we can hopefully cure more patients and improve outcomes. It is also critical that we expand our treatment options for patients with advanced disease. Compared to many years ago, patients with NET are now living much longer. However, we still need better treatments to control disease and help with symptoms related to disease so that patients can live long, productive lives with good quality of life.
The results of the CLARINET study, a large, international clinical trial of patients with advanced gastrointestinal and pancreatic neuroendocrine tumors, demonstrated that the somatostatin analog lanreotide slows tumor growth. This drug is currently under review at the FDA and may become a new treatment option for some patients in the near future.
Recent research has also provided new insight into the biology of neuroendocrine tumors. For example, a recent gene sequencing study suggests that dysregulation of the cell cycle may be important in the etiology of small bowel NET. As we understand more about the factors that drive the development and growth of neuroendocrine tumors, we hopefully will be able to find new targets for therapy.
Immunotherapy is treatment designed to enhance the immune system’s ability to recognize and attack cancer cells. The outcomes of patients with some forms of cancer, such as melanoma, have improved dramatically through the use of immunotherapy.
Given the favorable results and advances that have been seen in other tumor types, it is important for us to understand the immune characteristics of neuroendocrine tumor cells and to investigate the role of immunotherapy in the treatment of NETs.
Several large clinical trials investing novel treatment approaches have recently been completed. We are awaiting the results of these studies, all of which have the potential to influence treatment options for patients in the future.
Recent translational research has also provided new insight into the biology of neuroendocrine tumors. For example, a recent gene sequencing study suggests that dysregulation of the cell cycle may be important in the etiology of small bowel NET. As we understand more about the factors that drive the development and growth of neuroendocrine tumors, we hopefully will be able to find new targets for therapy.
Additional research also needs to be done to better understand why some people do and do not respond to certain therapies. Results from this investigation may help us to select the most appropriate therapy for each individual patient.
Noon