Hi, everybody,
First, good news: went for a checkup today and Dr said everything looks good.

However, all he did was look in my mouth & throat and feel my neck. I asked about CT scans, and he said I did not need one now, that I probably would have one next year. He said there is lots of scar tissue that would show up in a scan and look no different from a small tumor, and that by checking visually every month he will be able to catch any changes, and of course, if I notice anything different, to call him.

Is this the normal practice? I tend to think he is right, but thought I would ask what other people's experience is.

I wonder why I don't feel very excited about the good check-up? Maybe tomorrow I will, right now I don't really believe it, or I am already worrying about next month.

Leena

Leena,

Congratulations on your good news! I know there's a tendency soon after treatment to take some of these findings with a grain of salt and to think maybe it's too good to be true.

I had fairly frequent follow-up visits with my oncologist and oral surgeon (every couple of months) for awhile after my treatment ended, and I still see my oncologist a minimum of twice a year and the oral surgeon at least once a year. They pretty consistently do the visual/palpation exam and the oncologist does an annual chest x-ray, and if I have any other unusual symptoms he typically orders a CT or MRI right away (depending on the symptom). I know there are some on this site who believe fairly strongly that there should be scheduled scans as part of the follow-up, and I suspect this may vary in part as a function of the stage of the original cancer.

Try not to worry about next month's exam -- keep focusing on regaining your strength and hopefully you'll continue to get great reports.

Cathy

Yes, what your doctor is telling you is pretty much the standard operating procedure. The visualization/palpation exam is the mainstay of your followups. Even when I had an MRI that was a little weird, the radiologist ordered "direct visualization" by the head & neck surgeon. Scar tissue often cause "false positives".

As far as scans are concerned, the "practice guidelines" don't call for anything more than annual chest x-rays although many here have had annual PET scans, CT's, MRI's, etc. It probably depends on your staging, doctor, insurance company and other factors.

None of us are terribly excited about "good checkups" - that's normal too. After 16 months at least I don't feel any where near as much anxiety now. I have to admit I did feel ok (not great but ok) when it was a year post Tx, since statistically, my recurrence rate dropped significantly (at least local anyway).

Congratulations on your good checkup. You are cancer free today!

Hey Gary,
So one year is a good sign??
Minnie

Leena,

As I recall you are about 7 weeks post treatment. This is usually the first exam after treatment. In my case, since I did not have surgery, my otolaryngologist wanted to make sure the largest lymph node had responded to the radiation so he did a PET/CT and an MRI with contrast. The PET/CT showed no cancer but lots of healing and he reminded me they are sometimes misleading. Even with the physical exam there was concern that the swollen lymph node would require a neck dissection but based on the scan, he felt it would not be necessary, reminding me that with Stage IV cancer and the treatment I had, there would not be a high likelihood of further treatment increasing my survival chances. He did say that he would encourage me to undergo one surgery as a last ditch effort to remove any active cancer. I had another scan at 6 months (PET/CT) and it, too, was clear. I have another one scheduled for one year out. The reason he wants to scan is because of the advanced stage of my cancer. As Gary points out, the guidelines are regular (7-10 weeks) physical exams with exactly what you went through on your exam and a chest xray.

My point with this is there is no normal course and it depends on how far the cancer has spread and your specific circumstances.

Rejoice in your good news! Congratulations on yet another milestone for you.

Ed

Actually it's 6-8 weeks for the first year. My Head & Neck surgeon decided that he wants to see me every 8 weeks for the next 3 years. Probably because of my advanced stage.

Minnie, 1 year is a milestone of sorts since 80% of local recurrence happens within the first year. A stage III/IV has a 20% death rate the first year. I understand that 95% of local recurrence happens within the first 2 years, so the possibility falls off considerably the 2nd year. This is no guarantee of regional or distant issues.

Thanks for the reassurance,

I don't know why I would feel that a exam by a machine is better than one by a human being, but I guess I just wanted to make sure I am getting the best care. It's not that I enjoy the scans...

I try not to think of the percentages, but I do have my mind on that one-year milestone. One day at a time.

Gary, thanks for pointing out I am cancer free today. I had not really realized that with all the aftereffects of the radiation.

Leena

Leena, I understand how you feel about being insecure with the follow up scans.As Ed suggested, you should be given follow up scans to confirm you are cancer free after finishing treatment. I was given a full set of scans including MRI, CT scan, ultra sound and chest X ray. During my other follow up appointments, the oncologist just felt my neck and looked at my tonsil and throat. Last time I expressed my concern about occasional sore under my chin, my onologist then arranged MRI for me. There is a long queue so I shall have it in September.
Anyway, congratulations on your good news.
Karen.

I get checked by my Oncol and Surgeon every 6 weeks for the first year. They indicated because mine was in the tonsil they would see anything before a CT or PET would. Also they said 70% of the reacurrences the people tell them about some symtom before they see it. So machines are good but only when it is somewhat advaced.

I could not disagree with John N's doctors more. At the end of treatment there should be a set of baseline scans done. These are normally head and neck and a spiral CT of the chest / lungs. They confirm that the cancer has been removed, and give you a starting reference for all future scans. Late stage 3 and 4 patients get these repeated at 6 months. In between all this, doctors are visually and manually palpating the mouth and neck monthly at first, then quarterly between scans. These doctors are not considering that recurrence in surrounding tissues may not be palpable or visible to the naked eye, but would be large enough to be caught (at a significantly earlier time) by PET and other scanning technology, mets and spread to boney structures cannot be seen with the naked eye, palpated, or found by any other means than scanning, and they are a common progression of the disease after the first occurrence and treatment. Early mets to the cervical nodes will light up a PET scan and later a CT long before they are palpable...ditto the often rapid recurrences found in the aero digestive tract including the esophagus, lungs, and stomach. If these guys can find all this without scanning technology, then their hands and eyes should be insured by Lloyd's of London. Follow up scans are a required routine, commonly accepted by most major cancer centers at regular intervals after the first occurrence. Certainly annually would be the minimum. This protocol has been discussed here before, and most articulately by Gary's postings. Use the search feature to find them.