Top Ten Takeaways from the National NET Patient Conference

Last week, Anne and I attended the National NET Patient Conference in New Orleans, presented by NCAN (the Neuroendocrine Cancer Awareness Network). It was an amazing experience. Here, in no particular order, are our top ten takeaways:

1.) We’re not alone.

Before the conference, we had met only one person with neuroendocrine tumors, back when Anne had her Gallium scan in Pretoria. I can’t put into words how much it meant to talk with people, laugh with people, cry with people who not only know what NETs are (which already puts them ahead of 99% of the population), but who know intimately what it means to live with this disease. It’s not a club that anyone asks to join, but it’s an amazing community full of passionate people who are willing to fight for each other and lift each other up.

2. There are lots of parents with NETs looking for support

A few weeks ago, Anne started a Facebook group and website for parents with NETs. We were surprised at how many people joined right away. It turns out that this is a big need; there are resources for parents with cancer, and resources for parents with chronic illnesses, but NETs falls in a middle ground, and there’s not much directly aimed at families dealing with NETs. It’s a need we heard echoed by parents even of adult children at the conference, and one that we’re excited to try to meet.

3. Surgery was the right choice

There are varieties of opinions among NET experts on numerous topics, but there seemed to be consensus around one thing: the only known curative treatment is surgery, and the first line of treatment is always: cut it out.

4. It’s important to face the hard fact: there is no cure for metastatic NETs, and our goal is to extend life long enough to keep finding new treatments

This is one we already knew, but it was driven home by the presentations and conversations at the conference: at the moment, there is no cure for Anne’s disease. At one point, they asked 10-year survivors to raise their hands, then 15, then 20. It was encouraging to see how many survivors there were – but the fact that there was only one 25-year survivor was a stark reminder that right now, we’re hoping for 20 years. 20 years isn’t long enough. Anne will be under 50; the kids will only be in their early 20’s. We’ll continue to trust and pray, and to hope for new treatments and cures, but we have to do so with our eyes opened to the reality of what we’re facing.

5. It’s useful to think of NETs as a chronic illness

What we’re facing is a lifetime of medical treatments to deal with the effects of carcinoid syndrome and the cancer itself. That will start with a somatostatin analog (SSA), a monthly shot that both reduces carcinoid syndrome symptoms and inhibits tumor growth. It’s likely that somewhere down the road, it will involve PRRT (a targeted radioactive injection) and more surgeries. As with any chronic illness, I’m sure that things like monthly injections will become somewhat routine – but it’s a new normal we’re going to have to get used to, and then get used to again as it changes.

6. There are treatments available that can significantly increase quality of life

On the flip side of treating this as a chronic illness, though, is the fact that the various treatments really do make a difference. With SSA’s in particular, a lot of patients told us that there was a night and day difference once they started their injections. We’re hopeful that it will make a big difference for Anne; her dizziness and low blood pressure have kept her from being very active, and we’re hoping some of that will be solved with an SSA.

7. We have been incredibly fortunate in our medical care

Nearly every person we talked to had been misdiagnosed before their cancer was found, some criminally so. There were patients who’d been told that their illness was all in their head, or that one surgery would “cure” their NETs so there was no need for follow-up, or that they were suffering from IBS or any other number of common, mild diseases. We’re so grateful that the tumor was found when it was, that the surgeon in South Africa was willing to order all the tests we asked him to, that we found information online stressing the importance of seeing a specialist, and that we have had such excellent care from our multidisciplinary team here. Even in Anne’s case, she probably had the disease for at least a decade before it was found; but her diagnosis and treatment have been much more straightforward and positive than that of most of the other people we talked to.

8. It is vital for medical professionals and lay people to learn more about NETs

Part of the reason that so many people have such bad experiences is that NETs is a rare disease (although not as rare as once thought), and even most medical professionals have little to no experience with it. Often their information about it is incorrect or outdated. The good ones admit their ignorance; the bad ones plow ahead and criticize their patients who ask for specialist care.

The ignorance can cost lives. A patient with carcinoid disease, for example, can go into a fatal carcinoid crisis if they are given anaesthesia without being given octreotide as well; and yet there are plenty of stories where this very thing happens. There are organizations like NANETS dedicated to raising awareness among the medical community, and organizations like NCAN, the Healing NET Foundation, and the Carcinoid Cancer Foundation raising awareness and advocating for patients. What is also needed is more specialists; many of the foremost experts are nearing retirement age, and we need a new generation of physicians who are willing to specialize in this rare class of cancers and work in multidisciplinary teams to find the best treatment and curative options.

9. The food in New Orleans is as good as everyone says

We ate at Vitascope Hall (the hotel restaurant), Willa Jean, Q Smokery and Cafe, Borgne, and the famous Commander’s Palace. It was all amazing. Even the hotel conference food was good. We both gained several pounds. I regret nothing.

10. The Lord is using this situation for good

Several people we met spoke of a sense of calling, and we feel it too. The Lord is bringing good out of this. We’re in a situation where we have lots of people who care about us, and we can advocate for better care for less privileged patients with NETs. If we didn’t have the insurance we do, the money we do, the personal connections we do, the technological knowledge we do – we would not have gotten the care we needed. We feel an obligation to do what we can for the patients who don’t have those things, so that the patient being treated by their local surgeon or oncologist can be satisfied that they are getting competent care. So if, over the months and years ahead, you feel like we never shut up about NETs – good. It means we’re doing our job.

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