Gathering knowledge

Some patients want to know everything they can about the disease they are facing. They cruise the internet, join support groups, pepper their doctors with questions. Others don’t want to know anything. Part of that may be denial. Part of it may be fear. And part of it may spring from the knowledge of how poor information garnered from the internet can be.

A NET cancer diagnosis changes everything…

Regardless how the patient feels about information, caregivers need as much knowledge about the disease as they can get. Caregivers often become the patient’s best advocate. That means we have to be able to carry on an intelligent and informed discussion with medical staff at every level. Sometimes, that means understanding what a doctor is saying and not saying. Other times, it means educating people about the disease and drug interactions they may not have seen before. And sometimes it’s about helping the patient understand what is going on.

Knowledge for the advocate

For caregivers facing a rare disease like NET cancer, this is especially true. Unless you deal with a NET specialist, you will often likely have more knowledge of that illness than your doctor does. While Jane and I quickly fell into the hands of a NET specialist, none of the nurses in the cardiac ICU had ever heard of NET cancer before. They had a one page sheet designed to give them the background they needed, but I needed to fill in the gaps for them and, at times, the doctors on the floor.

Caregivers become the patient’s best advocate.

Six years after Jane’s death, most doctors still have never heard of NET cancer. Even many general oncologists have sketchy information at best. As Jane’s first oncologist said to us, “I’ve heard of carcinoid (NET) cancer, but I’ve never seen a case.” Her ego was small enough she had no hesitation in sending us to Dana-Farber where they had people who had more than heard of the disease before.

Dangers of ignorance

But that doesn’t always happen. Sometimes, the nearest specialist is a long plane ride away. Sometimes a doctor decides they can handle NET cancer if they just read enough. And sometimes, they think it works like any other cancer and decide they can cure it by traditional methods. So they set up a standard chemo or radiation regimen and move forward, not realizing those treatments do nothing for NET cancer.

…I needed to fill in the gaps…

Finding good information about NET cancer, while difficult, is better now than when Jane was diagnosed. For example, in 2010, the American Cancer Society had no real information on what they still call carcinoid cancer. Their failure to keep up with the name of the disease most now call NET cancer makes a search of their site more difficult than it needs to be–but at least they have information now.

Best of the best

The best, and most up-to-date, information for new patients comes from the Carcinoid Cancer Foundation. The oldest of the groups fighting NET cancer (founded in the late ’60s), they have extensive links not only to information on both basic and more advanced topics, they also provide a state-by-state listing of NET cancer specialists across the US. The NET Research Foundation also has good links for patients and caregivers.

But that doesn’t always happen.

Sometimes, however, the links on any of those sites prove daunting to a lay reader. We try to make things easier here, but the best site at talking in lay-friendly language is patient Ronny Allan’s Living with Neuroendocrine Cancer blog. Ronny has a real gift for putting the complex bits of NET cancer into language real people can follow effortlessly. He posts something new every few days. Sometimes, he talks about research. Others, he talks about his own experience. Both have value.

What patients think and feel

For caregivers trying to figure out how and what a patient thinks about, the latter pieces have great value. Even as well as Jane and I communicated, sometimes she baffled me. Sometimes, I knew I was talking to her cancer, not her. Other times–I’m still trying to decipher what she was thinking and feeling. Reading some of Ronny’s posts helps with that.

Ronny has a real gift…

The posts of other bloggers can help there as well. Understanding what a patient goes through–even at second-hand–can be a big help. There were things Jane simply would not talk about no matter how I approached them. And observation rarely does enough to explain the internal things a patient faces.

Power of knowledge

So critical piece of advice #2 boils down to this: Knowledge is power–and you need all the knowledge you can get. You can get some of that information by reading and some of that information by talking with the doctors who know something about the disease. The second of these is especially important because things are changing very quickly when it comes to our knowledge of NET cancer.

…I was talking to her cancer…

One of the online support groups, Dr. Liu’s Zebras, can help with that second part. They do an online Q&A with Dr. Eric Liu, a surgeon who specializes in NET cancer,  once a month. It’s private group–and you have to ask to join–but that piece alone gives membership great value. Another good group for this is NET Patients Sharing Knowledge & Experience. They are not a traditional support group, as they avoid posting anything that does not have a science knowledge or practical treatment experience piece to it. They are a forum for the latest information available on everything from the science to insurance coverage for treatments.

Keeping up with each other

But the most valuable pieces of information come from the patient you are supporting. We all like to think we know our spouses pretty well. But six years after Jane’s death, I’m still learning things about her I didn’t know. We tried to keep up with each other’s evolving thoughts and ideas. But conversation using words and body language moves slowly and can’t always keep up. Illness complicates things further, especially when the disease comes with embarrassing symptoms like NET cancer can.

…you need all the knowledge you can get.

I’ve written a post about the conversation every couple needs to have on a regular basis about severe illness, injury and death. But communication of every kind on every important topic becomes much more critical under these circumstances. A caregiver needs to really know the person on the other side of the equation to really do the job well. NET doctors say that when you’ve seen one case of NET cancer, you’ve seen one case. The same applies to being a caregiver. The better you know your either half, the better this is going to work.

Know your selves

All the medical information in the world won’t prove very helpful in your task if you don’t know your spouse and they don’t know you. A NET cancer diagnosis changes everything–and you need to talk about that together. And the patient, if they are going to trust you to make decisions when they can’t, needs to know you as well as you know them. Talk!

A caregiver needs to really know…

Do it by yourselves if you can, or get help if you need it, but talk about what you think and what you feel. It matters–both for now and for the future.