Carol and Brian,

I happened to see a little blurb in yesterday's entertainment pages of the Boston Globe about Eddie Van Halen. It mentioned that he was in town for some performances and stopped by the Ritz Carlton to do some impromptu playing in the hotel lounge, then stepped outside for a smoke. Sad!

Cathy

Oh my gosh! That is sooooo sad. Thanks, Cathy

I wonder whether anyone has an advice for me apropos the last part of my imitial post: "I am still confused. Are there types of regular checkups that I should be having apart from dermatological? Many thanks."

Penelope,

I would think you would follow all the same schedule as anyone with SCC. Have you not had any tests since surgery, i.e. PET/CT, CT with contrast, etc.?

Minimum, I think would be an annual chest x-ray and regular follow ups but I am not sure in the case of only a tumor in the base of your skull. Did you have radiation as well? The term "invasive" implies to me that you should have had quite a few diagnostic tests, comprehensive treatment and thorough follow up.

Ed

Hi Penelope,

I am embarrased because I have been following this thread of posts and missed the more important part: Your question! Ed might be exactly correct, however I would think that your staging might be an important indicator as far as future followup. Generally the more advanced stages of cancer would indicate closer followup. If I were you I would discuss this with a different doctor than you have presently. The reason is because it never hurts to get a second opinion.

This is confusing - I take it that you had skin cancer not oral cancer hence the dermatological examinations. In the case of oral cancer it makes no difference what staging it is. The practice guidelines for followup are:

visual and palpation exam every:

1-3 mos. year 1
2-4 mos. year 2
3-5 mos. year 3-5
6-12 mos. year 5>
Annual chest xray

For skin cancer the exam frequency is every 6-12 months for life.

You go to this link and find out the specific practice guidelines for skin cancer:
http://www.nccn.org/professionals/physician_gls/PDF/nmsc.pdf

George Harrison had oral cancer.

Oh, so none of us need PET or CT or MRI scans That ought to reduce the stress level a great deal.

Well they are not part of the NCCN recommended guidelines and my head & neck surgeon doesn't order them either. His position is that the palpation exam will pick up a recurrence faster and more accurately than scans. He was trained at UCSFCCC. We've had numerous discussions about this. I will test the waters again in September when I see the RO.

And I didn't write the guidelines - I just quote 'em. I am a little surprised that they don't recommend a PET/CT for distant mets, since this is a known risk. I did have 2 MRI's post Tx.

My oncologist has been routinely doing the visual/palpation exams and chest x-rays consistent with that schedule. The only time he orders CT's or MRI's is if I have specific symptoms he feels he needs to investigate further.

Cathy

Dare I say perhaps the "guidlines" are a clue to why recurrance survival statistics are so dismal?

Quoted statistics about the manual palpation is that 20 to 30% of the time it is not accurate. Yup I know we have been down this path before but I can't help but think that these "recurrances" are not recurrant at all! The cancer was there the whole time.

Advocacy is what this is all about and I think the guidelines are not considering technology improvements. Even the guidelines are rather "loose": 1 to 3 months, 2 to 4 ect. I believe that latitude is to allow for "CLOSER" followup as might be desirable in more advanced cases.

In my humble opinion, treatment (and followup) modalities based upon statistics of outcome will bring virtually no improvement in outcome. It also seem to me that the medical "industry" (which includes the insurers) are inclined to take a "this is the best we can do" position, when in fact there is much more that might be done.

Just as early detection is important in the origional diagnosis, Logic dictates it is important in "recurrant cases" as well.