My HMO is digging in their heels a little about followup PET scans. I have to admit they are not mentioned in the NCCN practice guidelines as a standard follow-up - only annual chest x-rays are (and regular physical exams of course). In fact they are only indicated for head & neck cancer when an occult primary is suspected. My oncologist tells me that the main window for head & neck cancer recurrence for me has passed and they are more concerned about new primaries (like lung, brain, liver, etc.), which SCC has a nasty tendency to do. What do you think? What is your experience?

I'm bringing this thread back as I'm also interested in any responses. I have always wondered if there was an average time frame for the original cancer to return.

Hi Gary,

When you say the window for a reoccurance is over for you it sounds a little soon. Isn't it true that all people react different to the same treatment? Does the stageing have an impact on this decision? Who makes this decision? One year out I would want to be checked at least bi-annually. No one said anything to me about it yet!

My HMO has a one million dollar limit. I think I will have used about three hundred grand of it on this.

Do they follow the guidelines you mention due to Insurance companies?

Take Care, Dan

Gary, I do hope my oncologist told me that I am now in a safety net but unluckily over 2 years now, he still said I am at a high risk of getting a recurrence and I cannot claim myself to be fully recovered from the illness at this point of time. I take his words because I know many cancer patients have recurrence within the first 5 years and given my advanced stage, I have to be extra cautious.With my limited knowledge, I think if we develop cancer in the lung, bone or other parts of the body, it is not primary but a spread (met.) In my case, my primary cancer is tonsil even if cancer is develped elsewhere in the future. I hope someone here can clarify my doubt. Up till now , I am still closely watched by my doctor at a 12-week interval and receive scanning tests (MRI, ultrasound and CT scan)on an annual basis. I never had any PET scan.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Gary at the cancer center I'm going to the oncologist's rule is PET/CT every 6 months for at least the first 2 years. I've got a stack of scans at this point, it's useful to be able to review back and see how things are changing, luckily for the better.

Insurance wise in my case the insurance carrier I have isn't questioning it at all at this point. It's all between the cancer center and the insurance co.

The one thing about PET/CT that I like is it's pretty much a whole body scan, top of head down to the hips, and I guess if something else is going wrong they can see that too.

Bob

What the doctor told me was that the majority of recurrence happens in the first year, but it takes five years total to be reasonably out of danger.

The PET/CT makes a lot more sense than a PET alone since they would have to correlate the PET to a CT or MRI anyway. My HMO won't have PET/CT for another couple of years. I would imagine it will eventually become a standard of care. The NCCN practice guidelines are for visual exam every 1-3 months (for the first year) which the HMO has been doing.

This debate is somewhat acedemic for the same reasons that statistics don't work for the individual. Anyone of us could fall outside the statistical norm for any reason. It is only in a large grouping that the statistics work.

The recurrance rate graph is a bell curve with the highest point at around 1 year after treatment. The recurrance rate after 1 years is on a steep part of the curve so statistically (that problem again) 1 to 2 years or longer puts you in pretty good shape. My ENT said that 90 to 95% of recurrances would happen before the first or second year. After 5 years the rate of recurrance drops low enough to be comparable to the rate of new occurances in the general population.

The survival rate and the recurrance rate are not exactly the same thing (some that have a recurrance do survive). There is a catch that most do not talk about though, and that is people do sometimes die from cancer way after the 5 year mark. Even 10 years out there might be a small number of non-survivors.

In a sense this is unimportant. We have discussed numbers here before and I still hold to the truth that we, as individuals, cannot be sure. The only thing we can do is live the life we have as well as can be done, period.

THERE IS NO CHANGING THE FACT THAT WE HAD CANCER.

THERE IS NO CHANGING THE FACT THAT ALL HUMANS ARE MORTAL.

Focus on the things we can change, it is a better use of time.

Gary's question about how often we should be checked by a scan and how often insurance should pay for it is worth debating because it exposes the actuarial problems in health care. We individuals tend to be selfish because it is US after all. Whereas the system has a limit to how much it can spend in a broad sense. I hate to say it but I believe it might boil down to how much your doctor believes you are worth. They solely have the power to order services and they regularly make decisions that ultimately affect the statistics, which later, they use those statistics to justify their decisions. I believe this phenomenon is why it takes so long to see an upward trend in the cure rate in any serious disease. How does that quote go Gary? "Insanity is doing the same thing over and over and expecting a different outcome each time"

Peace,

Interesting as it is, I saw an obituary in the Dallas paper a few weeks ago and the gentleman had gone 7 years with no signs of HNC recurrence and when it was discovered, he didn't make it a year. I discussed this with my ENT and he said this is very rare with 90% of recurrences happening in the first year. I hope this isn't too morbid and you don't ask me why I was scanning the obituaries! I actually saw a half page story about a dream the guy had of taking his family to a Mavericks game and Mark Cuban found out and invited the whole family to a game, sitting directly behind the bench just a few days before the gentleman passed away. There are so many great people in this world that make dreams come true for so many people that appear to be chasing their elusive dream.

Ed