Not That Rare Anymore

11/11/11 Houston Conference M.D. Anderson Cancer Center
 
Editor’s Note: This was my first experience with the Caring For Carcinoid Foundation and executive director, Lauren Erb. She and a group of energetic support workers handled the entire event very well. My complaints are few and perhaps prompted by the unavoidable. Much of what was said will not be news to readers of this blog. I note some information that was presented differently and some new developments to be aware of.

Dr. Delpassand, first to officially offer PRRT in the U.S., was the only speaker not directly affiliated with M.D. Anderson. All the other medical professionals were MDA employees. In many ways, this conference was a mirror image of the Dallas conference last month, which featured Dr. Tom O’Dorisio of Iowa and the Louisiana group practice known as the Kenner Team (Drs. Woltering, Boudreaux & Wang.)

NETs Not That Rare
Dr. James Yao, assoc. prof and deputy chair of G.I. Medical Oncology MDA observed:
For more than two centuries, neuroendocrine cancer was thought to be fairly rare disease. Looking at the National Institutes of Health’s large cancer registries going back to 1973 the stats most often quoted were 1 in 100,000 people per year would be diagnosed with NETs.

But the number of new cases has steadily risen. Now there are 5.25 per 100,000 new NETs cases in the U.S. That’s about 1% of all cancers diagnosed in US and the numbers are still increasing.
What’s the cause of this increase? We don’t know for sure but better detection and misdiagnosis undoubtedly contribute to the rise. Today in the U.S. there are 100,000 cases of people who’ve had NETs some time in their lives.

Editor’s Note: If you want an impressive look at the global aspects of NETs go to:
http://www.youtube.com/user/netcancerday#p/u

New Treatments Available
For many years, U.S. doctors had only one chemotherapy drug plus octreotide, approved for halting neuroendocrine tumor growth. Now two new drugs have been FDA-approved: Sutent and Afinitor.

Editor’s Note: Dr. Yao was lead investigator for the development of Afinitor. I expected more emphasis on this new drug but it was barely mentioned.)

A revealing statement on surgical protocol
Dr. Yao said, “We see small NETs. Sometimes they are very small and have not spread (metastasized) and usually there are no symptoms if (the tumors) have not spread. If there’s regional spread to the lymph nodes, it’s usually not operable.”

Editor’s Note: I took care to get his words down exactly as they were said because I believe this is an important consideration if you are planning to go to M.D. Anderson, specifically or to any carcinoid specialist. The following is my comentary on Dr. Yao's remarks.

The word “inoperable” does NOT mean the same thing to every specialist. To Dr. Yao and many of his associates at MDA, if you have distant metastases (such as to the mediastinum or mesentery) you are unlikely to get surgery because you do NOT meet their criteria for surgery, which is: no surgery unless they are relatively certain they can remove ALL your cancerous tissue.

Sorry to say, this policy or protocol is widespread throughout the U.S. Once you’ve spread, you’re good as dead – so far as the hospital or doctor is concerned.

I went to MDA in 2007, a few months after the removal of my primary (and only my primary, thanks to policies at a different hospital.) I still had a mesenteric mass and some other evidence of tumors in my abdomen, I was deemed “inoperable." Through the ACOR site, I found the Kenner team in Louisiana, and about a dozen tumors were removed from my abdomen.

I believe scientific literature supports this type of surgical clean-out called “de-bulking.” Certainly there is a large and growing population of NETs patients who are grateful for de-bulking. I’m entering my fifth year since diagnosis and no doubt had the disease for many years before I was diagnosed. I don’t believe I would have the quality of life I currently enjoy if I had not received de-bulking.

QOL – the missing approach to treatment
It is fairly well agreed among NETs specialists that the lower your tumor burden, the higher your  quality of life (QOL.) It also is a shared opinion that because NETs generally are so slow-growing, removing these tumors can provide a much better QOL and probably a longer life-span for most patients. NETs are not like the rapidly growing, more widely known tumors such as adenocarcinoma or glioblastoma, which recur and prove fatal within a few months.

So, why wouldn’t a patient want to have as much tumor as possible removed from his or her body? Why wouldn’t a doctor want that for the patient?

Consider Dr. Yao’s explanation during the physician Q&A at the Houston conference. Patients were encouraged to write their questions on cards at each table. The moderator, Ms. Erb, read the questions aloud and various doctors answered.

Q: When does a patient know whether to “watch and wait” or go after treatment more aggressively?
A: Yao: “You really have to talk with your doctor; assess your overall health situation and weigh the risk to value ratio. We don’t do super-aggressive in some situations. We’re not peeling off tumor tissue from blood vessels, knowing that it will grow back. These long, 10-hour surgeries – we don’t do that many.”

Editor’s Note: There you have it. I think we all know that NETs return, although not in the point of origin, necessarily. We know that de-bulking buys us some time – usually pretty good time since our tumor burden has been reduced. Yes, it is a long and risky surgery. But do you think it should not be attempted? Rarely a cancer patient says, “No de-bulking. I’ll just allow my body to become filled with tumors and suffer the effects of rising tumor secretions until I die.”

Researchers are more interested in the bottom line - does the procedure prolong life? Even if it prolongs your days by only a few, it might be worth the risk of surgery. But as medical costs soar, the conservative approach is becoming the norm. Oral chemo drugs are becoming the treatment of choice, even though most of them are horrendously expensive. 

Which statement sounds better to you?  "We attempted to CURE cancer by removing it from this many patients." Or "we also attempted to promote a better QOL for cancer patients by removing what we could." 

I'm sure some experts in risk management looked at the stats and decided the longer a patient is on the table, the higher the risk. They also factored in the prices they could charge for one procedure vs several procedures in the same time span. 

Certainly, there are doctors who believe there's no benefit from de-bulking. I wonder, if these doctors were in our shoes, what would they choose?

Some patients at MDA do have partial removal of neuroendocrine mass - sometimes more than once. Usually, they consult surgeons in other departments at MDA. The facility is vast both in its physical presence and the extent of its offerings. I've known folks who probably could not have received their heroic treatments anywhere else.

Not every patient is a good candidate for surgery. Some are better served with alternative treatments including PRRT and MDA does refer patients for PRRT. But not every patient is a candidate for PRRT, either. Until the science of NETs treatments advances to the point where tumors can be destroyed or stopped without surgery, de-bulking remains a first or second-line treatment worth consideration.