Planning matters

It’s hard to set realistic goals or make good plans when you know, as I did five years ago, virtually nothing about the situation you find yourself in. But as anyone who knows me can tell you, I believe in nothing more strongly than setting goals and evolving plans to reach those goals. That no plan survives first contact with reality does not mean planning is worthless. The person who plans is far more likely to succeed in any given situation than someone who doesn’t.

…raising awareness will be the most difficult part…

Two quotes on this subject have guided my life in many ways. The first is, “Those who fail to plan, plan to fail.” You can, if you get lucky, succeed without a plan if your opponent is equally without a clear plan. But if that opponent plans at all–or has come to the field with overwhelming force–you have almost no chance of victory. Cancer, in general, is an overwhelming force–and NET cancer especially so.

Planning in the blood

The second is, “Poor prior planning produces pitifully poor performance.” Poor plans based on poor information are more likely to end successfully than no plan at all, but not by very much. An untrained army will not defeat one that is properly prepared for battle. Ask the French about Agincourt if you have doubts. They had overwhelming force against a small group of highly trained archers and a handful of dismounted knights. Many an English yeoman left that battlefield a wealthy man.

Cancer, in general, is an overwhelming force…

That is how I was brought up as a child and trained as a young adult. It was how I ran my classroom–and how Jane and I fought her cancer. Having a plan does not always mean you win–it just makes it more likely.

Plans start with goals

Our goal is simple: eliminate NET cancer as a fatal disease; create ways to cure it when it happens; and work to prevent it if we can. The third goal is the least pressing of the three, not because it is not important but because we do not know enough about the causes of the disease to take any meaningful action in that direction.

Having a plan does not always mean you win…

Finding a cure–even just finding ways to ease the symptoms–is not something I have the background to bring about directly. Most of those reading this are not doctors or researchers. That does not mean, however, that there are not concrete things we can do to bring about those things.

Lack of awareness

The biggest problem we face is the same one that existed five years ago: lack of awareness of the disease. Currently, the only hope for a cure a NET cancer patient has is early detection–early enough that surgery can deal with a single tiny tumor before it spreads. Right now, most discoveries at that stage are accidental. There is no equivalent of a breast self-exam or a broad spectrum blood test like PSA for prostate cancer.

Our goal is simple… 

Too often, there are no symptoms of any kind until after the cancer has spread well beyond the original tumor. By that time, surgery can at best debulk some tumors and reduce symptoms somewhat. And sometimes surgery is useless.

Impact of awareness

But whether because of increased awareness, better training, improved imaging techniques or some other factor, we are seeing 50 percent more diagnoses in the US than we were five years ago. At about 15,000 diagnoses a year, NET cancer still pales next to breast cancer, lung cancer, prostate cancer, colon cancer or any of a number of other forms of the disease. But the truth remains we have no idea how many people die of NET cancer each year who are never properly diagnosed with the disease.

…sometimes surgery is useless.

Lack of awareness also has an impact on our ability to increase resources for research at every level from basic science to developing treatments. Scientists simply do not enter fields of research they have never heard of. Nor do people make donations to diseases they have never heard of, let alone experienced.

Website awareness

Raising awareness, then, remains one of the crucial things we met continue to work on over the next five years. In Walking with Jane’s case, that means continuing to work on this website so that it increasingly becomes what my original vision for it was: a valuable resource written in plain English where people can come to learn about NET cancer and the various places available where they can get additional information.

NET cancer still pales next to breast cancer…

While I have done a good job on some sections of this site, others need to be updated and expanded. This blog accounts for the vast majority of visits to walkingwithjane.org. But the Resources page is sadly out of date and the Calendar doesn’t get as much attention from me as it needs. Part of the reason for that is the things I do in other areas; there really are only so many minutes in the day. Essentially, that means I need to recruit some help to take on part of what I am doing here and/or elsewhere.

Social media awareness

Last year, walkingwithjane.org attracted 24,444 hits from people in 101 different countries. That sounds like a lot–and it is. But it is small change even in the NET cancer world. For example, the Carcinoid Cancer Foundation website garners 45,000 hits a month. My goal for next year is 36,000–about 3000 visits a month. that means continuing to build audience for these posts, but also redeveloping the other pages on the site.

…I need to recruit some help…

While this and other websites are a major piece of the awareness puzzle, it cannot be the only piece. We need to continue to develop social media. I started an experiment last week with the help of Jillian Emmons, a member of our Jimmy Fund Walk team, to increase the reach of the Walking with Jane Facebook Page. We will try to expand our use of Twitter, Pinterest, and Instagram in the coming year, as well, hoping that those efforts will increase general awareness of the disease among Internet users.

Other avenues

Last winter I produced a pilot for a weekly audio podcast about NET cancer. It did not generate much of an audience, but that may have been because things came up that pulled me away from promoting it very well. It is an idea I’d like to come back to if I can figure out how to streamline the production process and improve promotion.

We need to continue to develop social media.

But both social media and the Internet require an active and connected audience–and not everyone is. Walking with Jane now has two NET cancer pamphlets in production that we need to work to get into doctors’ offices across the country so that we can educate both doctors and patients about the existence of the disease.

Getting the word out

We need to do more with visual media. I’ve produced a number of short PSAs, but we need to create more of them and keep pressing to get them aired beyond the Walking with Jane Channel on YouTube. My hope is to produce one 15-30 second PSA each month aimed at wetting people’s’ appetites for more information about NET cancer–or at least get them familiar with the name of the disease.

It is an idea I’d like to come back to…

Another thing we need to do is get more people to tell their NET cancer stories, whether in writing or on video. That is a task I need to spend some more time thinking about. We tried several different approaches to this over the last five years–but most of what has happened I had very little to do with. Most were cases of accidental offense where a reporter somewhere heard about someone with the disease completely by accident and decided it would make a good story. We need, all of us, to work more intentionally to get those stories out to a broader audience.

Awareness is key

Last year, I was invited to speak to a couple of different civic groups about NET cancer. Here, too, we need to be more active in seeking out opportunities to do those kinds of things. To that end, one of the things I will do in February is send out letters locally, regionally, and nationally to civic and social groups offering to talk about NET cancer at meetings at all levels of their organizations. I’ve also encouraged people at Dana-Farber to speak to more lay audiences when the opportunity presents itself.

We need to do more with visual media.

In some respects, raising awareness will be the most difficult part of what lies in front of us. But it is also the key to both early diagnosis and to creating the resources we will need if we are to find a cure. We’ll need not only to pursue the things outlined above, but continue all the things we have done that have proven successful in the last five years.

In the next part of this series, we’ll consider plans for creating the resources necessary to eventually kill NET cancer.