We moved from Alaska to Georgia this Summer.

I had my surgery done in Seattle and at our last visit I left with guidelines of what "he" would do. At every 6 months I would have scopes and biopsies of my tongue, and at the yearly exams a PET/CT scan also. Office visits for the first two years would be every 2 months, at 3 years every 3 months etc....

I just had my appointment with my new Dr and his guidelines are different. He doesn't feel scopes and biopsies are needed every 6 months, or at all unless something changes. The office visits (same time frame as above) with a physical exam and indirect laryngoscopy would be done every time I see him and a chest xray every year. He said if it comes back, it normally starts in the lymph nodes and then follows back to the tongue.


I haven't been through anything compared to many of you, but I still worry every day that this will come back.
I wasn't sure what to do, but I did request the PET scan and he had no problem getting that scheduled. I don't think he would have a problem doing the scopes and biopsies if I pushed it, but I'm now unsure if it's really needed. Can you ever have too much testing done?

I'm just a little upset and concerned. I know my insurance will pay for yearly PET scan. Should I see if they will do them every 6 months?
I would really like your input as if this new plan sounds good and I'm just being a baby.

Hi Patty,

I do not have yearly Pet Scans, Biopsy's or Chest x-rays. I see my ENT and RO once a year (spaced so I see one of them every six months).

When I was a year out like you I think I was seeing someone every 4 months. My RO does a scope and they both check for any changes. If I am worried about anything at all then they will schedule an MRI, so far I have had two.

Hope this helps a little.

Hi Patty, I just had my 3rd Pet Scan, as Nov 11th is my 3 year mark. I get scoped every visit except when the Pet is done, this next year I will see them all every 4 months and next year evry 6 months. Every visit has lab work and the scope until.........!! Hope this helpa a little. Semper-Fi Bob

Thank you Sam and Bob for your replies.

Any other input?????

Patty, sorry your appointment didnt go better. It cant hurt to get scoped. It only takes a few minutes to do. My ENT does it every few visits unless I am having a problem then its weekly (eewww!). I see my ENT about every 3-6 weeks depending on what else is going on with my recovery.

As far as the CT or PET scans go, I get mine ordered by my medical oncologist. I now only do CT scans every 6 months. My medical oncologist said insurance companies dont like to pay for the PET scans since they are several times the cost of a CT scan. Im not complaining about doing CTs, I hate the false positives a PET scan has. If the CT would show an abnormality then Im sure a PET would be ordered. Did you get an oncologist at your new location?

To be honest, if it were me, I would get another ENT. I wouldnt be comfortable with this person. Sounds like thats your thought process too since you are posting questions about your appointment. You are smart and know that something wasnt quite right with their checkup procedures.

Good luck and good health to you

Thank you Christine, that's how my husband and I look at it too. It can't hurt to have scopes and my tongue biopsied every 6 months.

Since everything was negative in the lymph nodes that they took and margins were clear with my initial surgery, I did not choose to have chemo or radiation. I decided to save that for any recurrence. I've never seen an oncologist.

I think that is pretty much the reason why the new Dr felt the scopes/biopsies every 6 months were not needed.
I liked him, but I'm just not sure and appreciate input.

It's just wishy washy.....what's needed and what's not???

Its not necessary to go thru biopsies every 6 months. Only do a biopsy if you have something to biopsy. But yes, do the scopes. Those are so the doc can take a look and then if necessary do something more.

If the doc sees alot of OC patients and is very familiar with OC then I would be comfortable with him but if not start shopping. Also another important thing, is he affiliated with a cancer center? Not all ENTs have seen alot of oral cancers. All ENTs are not equal. Brian said there are 2 types of ENTs. Sorry but I dont remember more than that.

It seems like the new doctor's guidelines are good to follow.

I really appreciate the replies. I would not have been reassured if I had to make this decision without input.

I get just about the same treatment your Dr wants to do to you by=ut get CTScans and not pet every 6 months abd a scope every visit.

My biopsy came back that the area around my tongue has dyspasia ..Dr.s are unsure if the radiation wouldn't do me more harm than good ...they want to keep an eye on me and have me checked every month ...has anyone else had dysplasia and what was your careplan??



53 Year Old Female Non Smoker - Non Drinker
Stage 2 Squamous Carcenoma middle tongue, Surgery 9/3/2010 15 hour operation, Neck distention,right - lymph node removed/ok -some tongue dysplasia - free flap/forearm, left arm, skin graph-thigh, lip split/jaw 1 tooth removed/PEG