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.