Lusting after NED

Wait, this is not what you think (but it does make for a snappy headline, eh?)!

NED stands for "No evidence of disease," and is an acronym that I only recently learned about on a website composed of lung cancer patients and their close friends and family. It's like getting an 800 on your SAT scores--rare enough that those who attain this coveted status are held in utmost regard. They give the rest of us hope, whether realistic or not. Maybe someday I can announce to the assembled that I am "NED" too.

However, it's still a status that is far too elusive for my cohort. A member of this site (you have to sign up to enter it) promised to send other members a copy of the National Cancer Care Network (NCCN) 2010 clinical practice guidelines for lung cancer. I requested and received a copy and it is a most detailed look at the staging of lung cancer and the treatment options for each stage of the disease process. Dr. M from Seattle Cancer Care Alliance, who was my second opinion oncologist last fall is listed as one of the lung cancer panel members. But at the end of the practice guidelines is a listing of cancer suvivorship rates. At the end of 2000, according to this document the survival rates for the following cancers were estimated to be:

breast cancer..........2,197,000
prostate cancer....... 1,637,000
colon cancer..........>1,000,000
lung cancer.................340,000

Contrast that with the fact that each year over 166,000 people are diagnosed with lung cancer--more than all the other three combined, and again the conclusion is inescapable--research into curing lung cancer is not a priority for the medical community at the present time. Some doctors believe that the tobacco industry has some responsibility for this state of affairs. Those who make cigarettes and cigars do not want the full facts on this to be disclosed because it might drive customers away if they were made fully aware of the terrible toll tobacco exacts. In fact one oncologist I know fully supports raising the tax on tobacco to confiscatory levels. Me, I just prefer a Susan G. Komen "Race for the Cure" approach, with lots of participants and lots of publicity, with the spotlight fully focused on the numbers and the money involved, and exactly what happens when you get diagnosed with lung cancer.

If more folks could be persuaded that indeed, they are at risk for developing lung cancer, and that major new research into diagnosis and cures is warranted, then perhaps an inexpensive early warning test for lung cancers could be invented that could be a regular part of everyone's annual check ups. Kind of like a kinder, gentler, more frequent colonoscopy. Most lung cancer is not detected until it is at stage IV, the last stage, where it has metastasized to other parts of the body like bones and brains. Very difficult to treat and cure at that point.

Well, I'll climb down from my soapbox for a bit just to give a personal update. I had appointments this past week with my oncologist and the otolaryngologist who did the injection into my vocal cord. The news was 'meh.'

My voice has not fully returned, nor will it with just this operation. The ENT doctor said that for the operation to have completely restored the vocal function, the injection had to have made the paralyzed cord come out exactly halfway and be completely smooth and straight for the functioning cord to close the gap just right. He can get closer to the ideal, but it has to be a more invasive surgery where he does an incision on my neck. And given that we do not know if the Tarceva is working, and will not until my next CT scans, which are set for February 25, he suggested that I be content with what I have for now and save my strength for the bigger battles ahead. So that is the plan.

My oncologist informed me that the pathologist never did the test on the last biopsy that would have determined whether my lung cancer has the EGFR mutation that makes it particularly susceptible to Tarceva. Apparently it is an expensive test--$700+-- and Group Health is not wild about it as a result (I am working on a mini rant about Group Health and money, but will save that for another time). So we are going on a wing and a prayer here with the selection of this as second line treatment. There is some evidence that one does not need the EGFR mutation to succeed on Tarceva, but that is an even slimmer percentage again. So we are left hanging on to hope, and waiting once again.

And dreaming of NED.