Overwhelmed by carcinoid/NETs stories

I am feeling a bit overwhelmed the last few days. I’ve spent some time on the sites of five different carcinoid support groups. Their experiences are jarring. Not only do they bring back memories of Jane’s struggle, but they underline just how lucky Jane and I were to have access to the doctors and resources in this part of the country.

We have to keep working to find answers…

We did not look forward to the 90-120 minute commute each way into Boston. That trip is a walk in the park compared to what most patients face. Several are traveling hundreds of miles to see the kinds of specialists we take for granted. Those who do not travel those kinds of distances often have to deal with doctors who have little or no experience with this most slippery of all cancers.

Overwhelmed by confusion and frustration

Those doctors do the best they can under the circumstances. But is it any wonder that patients become frustrated and confused when their doctors’ own frustrations and confusions are on display. I’ve read twice today alone of patients whose doctors were mystified that the patients’ tumors had gotten smaller after Sandostatin injections. I can’t count the number of times doctors have told patients–just this week–that because their 5-HIAA urine tests were negative they could not possibly have carcinoid.

…those savants are not always easy to get to physically…

In the first case, there is nothing miraculous about carcinoid tumors sometimes shrinking because of Sandostatin or Octreotide treatments. In a small number of cases, the tumors do actually shrink. The drugs block a receptor on the surface of the tumors. If the tumors happen to be just the right type, they starve a little as a result, and shrink. More often, the tumors stop growing for a while. Too often, though, the tumors continue to grow and spread despite the treatment.

Overwhelmed by lack of information

Some of the drugs in trials at the moment have more success than Sandostatin and Octreotide in shrinking and stopping tumor growth. The CAPTEM combination reported on in January has even recorded some complete remissions–as well as shrinking and delaying tumor growth, according to the interim report on a very small Phase II study. But no therapy we have under study works on everyone.

…we have no single test that can absolutely rule carcinoid/NETs out.

Over 60 percent of all the carcinoid/NETs we diagnose involve the production of serotonin. The by-products created when the liver metabolizes serotonin are what the 5-HIAA urine test is designed to detect. About 35 percent of the carcinoid/NETs diagnosed involve the digestive hormones and peptides created by the pancreas. They require a different set of tests.

Overwhelmed by complexity of diagnosis

The body produces over 24,000 different hormones and peptides–and carcinoid/NETs can produce any of them. Unfortunately, we only have tests for a relative handful of those hormones and peptides. And even the tests we have must be ordered by the physician to be of any use in diagnosing the disease.

…no therapy we have under study works on everyone.

The problem is we have no single test that can absolutely rule carcinoid/NETs out. Even the much-praised Gallium-68 scan–which is still in trials–and the Octreoscan patients and doctors have begun to rely on cannot be counted on to detect the disease. If the tumors have a different variety of receptor that does not take up the contrast agent, those scans will be just as useless as any of the traditional scans doctors have used to detect other forms of cancer.

Overwhelmed by the search

Dr. Eric Liu posted on Facebook last month about the value of having a carcinoid/NETs specialist who has seen a significant number of carcinoid/NETs patients. It is one thing to have read about the disease amid all the other things even a general oncologist has to read to stay current on the more common cancers. It is something else entirely to have made carcinoid/NETs the focus of your work. It is one thing to have treated one or two patients with this oddball cancer. It is something else entirely to have worked with hundreds–or even thousands–of people afflicted with the disease.

…doctors do the best they can under the circumstances.

But those savants are not always easy to get to physically–let alone find. Insurance companies continue to give people grief–even under the new regimen–about going “out of network” or wanting expensive drugs that will decrease the company’s bottom line. There are endless hurdles patients have to face–along with the debilitating symptoms.

Resolving confusion, resolving frustration

The size and scale of the problems carcinoid/NETs patients face every day can overwhelm them. We can’t let that happen. We have to keep working to find answers that will not only save their lives, but also give them a better quality of life.

I am feeling a bit overwhelmed the last few days.

That begins with educating both primary care doctors and traditional oncologists about what our  current tests can and cannot do–and why they need to be careful about the conclusions they draw from those tests we do have. It also means finding better ways to let both doctors and patients stay up-to-date about treatments for this perplexing beast of a cancer.