Hello Again all,

...and I hope everyone is well. I have read many posts here and I can't help but feel that I may not be getting the proper post operative care. It seems that many here are being treated more aggressivly and carefully than I. I spoke with my ENT about his protocol, and clinical follow-up is all he recommends. He does not follow with PET scans, CT's, nor any diagnostic testing whatsoever. Granted, I was a "very shallow" (3mm) stage 2, I have since had a diagnosis of dysplasia, which nothing has been done about (except watching the area...was very close to the time of the surgery which may be what caused the dx). I am all for being aggressive and proactive, but I sometimes feel as if I am being treated for a pulled muscle. It is possible that my own anxiety feeds my concerns, which is why am writing with hopes of getting some input from some more experienced and knowledgable than myself. Any advice would be greatly appreciated and I again wish everbody here the very best!!! Take care and blessings to all!!!

Thanks

Most ENT's don't order scans. They prefer to perform palpation and direct visualization examinations. It's always been the RO or the oncologist who have ordered my scans.

The NCCN oncology practice guidelines only recommend an annual chest x-ray as far as scans go. The CCC where I go orders an annual MRI and that's about it. Some here do get PET scans but I believe they are the exception rather than the rule.

How often are you being seen is the most important question.

Gary gives good information. I finished treatment 26 months ago and I have yet to have a PET scan. I have had three chest xrays. I went to my doctor every month for the first year and a half or so, now I go every three months.
Minnie

I have annual chest x-rays, but have not had scans on a routine basis at all since the end of my treatment (I have had a few over the years if my oncologist felt they were warranted for specific symptoms).

I see my medical oncologist at least twice a year (sometimes more than that if needed, since he became my primary care physician). Also, I see my radiation oncologist annually, and usually see my oral surgeon at least once a year. All of them do palpation exams.

Cathy

WOW! Thank you guys so much! I guess I was just a bit concerned too, because I never saw an oncologist, just the ENT (whom I do see once a month). This,very much, puts my mind at ease, thank you for the info. Best wishes.

Hi Rick,

My story is very similar to yours some of which we have discussed in personl emails before. I had a diagnosis of scc of the lateral border of the tongue from an incisional biopsy done in my office. I went directly to the chief of head and neck surgery at a local CCC. He performed a partial glossectomy and modified neck resection with 30 clear lymph nodes. NO rads, NO chemo. This was done this past April. I have seen him 4 times since and each time the next appointment is scheduled further apart.

I felt that his exams were superficial and on my own I saw a local ENT who I am friendly with. I subsquently had a laryngoscopy and endoscopy done and all is clear. I asked him about a pet scan and/or any other follow-up that he suggested and there is none. He wants to see me yearly and I will continue seeing the surgeon.

Because of my unique situation being a dentist, I can have a ViziLite exam whenever I want and my partners and hygientists check the areas that I cannot check myself.

Good luck and glad to hear that you are feeling better about this. I personnally have no idea when and if my own paranoia will go away, despite all the checking.

Jerry

for me they are doing a pet scan in 6 mnths due to the fact i did not have to have radation or chemo as the one node out of 24 was a pin head and said if they did radtion in that area could not do in future so the pet scan is a prevention to be sure im in good shape rd

Alright, thanks to you guys as well. I also had an appt with a local dentist for a ViziLite exam. I discussed this with my ENT and he felt that due to the lack of specificity of the exam, it may not be helpful for me. He thought that the surgical site would probably "light up" as well. There is a dentist in Sidney NY, whom my dentist is working with, that I will be seeing at the end of this month. He is in the process of developing some sort of light that will cause any abnormal cells to appear differently when exposed to it. It sounds very promising and I was told it is a bit more specific to dysplasias than the ViziLite. I am curious to see how this goes. I will post more about it when I find out more. Thank you all once again and best wishes to all!!!

Hi Rick,
As you can see, each doctor seems to have his/her own interpretation of the NCCN guildelines.

For the first year following my treatment (surgery and radiation), by ENT doc saw me every six weeks. He does the usual visual exam and palpates my head, neck and oral cavit, as Gary notes above. He always does an endoscopic exam and checks out the back of my mouth and throat pretty carefully. I also saw the radiation oncologist every 3 months during the first year. She ordered CT scans at 3, 6 and 12 months and now plans on doing a scan every 6 months. Generally it is the radiation oncologist who orders the scan but sometimes it's my ENT doc.

During the second year of monitoring, I now see the ENT doc every two months for the same palpation, endoscopic and visual exam, and the radiation oncologist every 4 months.

Because I have had oral lichen planus in the past, I also see an oral pathologist 4 times a year. His exam is more focused on the surface tissues, discoloration and texture rather than on the lymph nodes or the surgical site.

Hope this is of some help. I would recommend that, in consultation with your doctor, you find a monitoring process that makes you comfortable. If your current doc isn't willing to provide it, find another one. Best wishes, Sheldon

Rick,

I am especially interested in a follow-up on the light that is being developed.

I will be attending the American Dental Assoc. meeting in Phila. next month, looking for a new product that I heard will be more specific than the ViziLite. Not sure if it is out yet.

Jerry