Need clarification, please. 'in remission' vs. NED

micktissue said:

Hey Keeper
Hi Dawn below is what my rad onco said in an email response to my question "making sense of remission, NED, and cured". I appreciate his honesty and his thinking makes a lot of sense to me. Most of what these guys can count on is statistics to guide their prognostications. Both my surgeon and rad onco have given me a 60% 5-year survival. Given the stats I'm kind of thinking of giving the PET scan a miss. Thoughts?

Best,

Mick

From Dr Lee:

"I almost never use the terms 'in remission' or 'cure' to describe the status of a patient.

"I believe that 'remission' is a term more often used by medical oncologists, and to me, the connotation is that there is definitely some microscopic disease remaining. We don't know that to be the case for you.

"The most solid definition of 'cure' I know: patient is cured if they die of something other than the cancer. Because there is always at least a small risk of recurrence, I don't use the term -- even though that is the goal of treatment in definitive cases like yours.

"I would classify you as 'NED' meaning -- exactly as the words say -- that there is currently no evidence of disease. We like using the 5yr NED endpoint for trials and such because, for most cancers, the vast majority of recurrences develop within the first 5 yrs. In fact, for HNSCC, 3yrs is a pretty good endpoint. Most patients who make it to 5yrs will die of something else, i.e., will ultimately be considered cured of their disease."

sweetblood22 said:

What he wrote does make
What he wrote does make sense to me. Thank you for posting his response, Mick. I also got the 60% statistic, but they pointed out that was for a normal patient and not one with Fanconi Anemia. I guess it's higher for me.

Funny about the game of chicken, because I thought if I crossed the street in town and died from getting hit by a bus I'm cured of cancer. Lol

I do understand why they are not giving me a PET scan. It's just there is a part of me that wants to hear that NED. Sort of gives you the all clear, for now sign. Clean PET is no guarantee it won't come back, either so I guess I'll just keep chugging along and try and hit that five year mark. . Hopefully longer.