ENT's do have set follow-up exams based on NCCN guidelines, and thier Otololaryncology organization, but scanning is less specific, and in certain H&N cancers, like oropharyngeal, and it's for T3,T4 disease only, as per the NCCN guidelines, minus any suspicion.

Follow-up exam

1st year once every 1-3 months
2nd year once every 2-6 months
3-5 years once every 4-8 months
5 years or more once every 12 months

I had an unknown primary but it was suspected it was oropharyngeal based on being HPV+. I'm being seen every three months the first two years then every 6 months until 5 years then cut loose.... if all goes well that is.

I was treated at JH like Ambra and she's hearing the same thing I am about follow up scans. The consensus is so varied.

"T"

PaulB,

I appreciate you posting that guideline. It is less the frequency of ENT followups and more the PET scans I am worried about. It seems to me that most of the folks here on OCF got at least two scans after the TX ended, some more. The guidelines leave the doctors plenty of space to work within. It just seems that most doctors choose more scanning (and more ENt scopes as well) that my (and Fishmanpa's) RO. And yes, it does make me extremely uneasy.

Fishmanpa, I will post here what I find out from the RO. I certainly plan to press the matter. I really want to know what is a good reason NOT to have a PET scan, when most patients elsewhere are given at least two.

My experience at several CCC is a post treatment scan, all PET/CT, were done 3 months post treatment, and then 6 months after that, but I never made it past that before a recurrence. I read an article that said regular doctor follow-ups, with a palpable and visual exam, were just as effective as scanning, and scheduled scanning was unnecessary. I also read elsewhere, that a PET/CT is like 28% more effective in detecting cancer than a doctors exam is. I did find all my cancers in my lymph nodes myself, confirmed by PET/CT, FNAB, except my last one due to having a pec flap, which is one of the negative aspects of one, and makes recurrences difficult to detect, so I need scans now. I think I had about 14 scans or so.

Good luck with your doctor visit.

[quote=PaulB]I did find all my cancers in my lymph nodes myself[/quote]

That was pretty much the reason I was given. I was told that between the visits, scopes, physical exams and my own body telling me something was not right, we/they would be able to determine if something sinister was brewing. If I had issues or they saw or felt something out of the ordinary, then scans would be ordered but until such a time occurs, no scans.

Ambra... ring that bell loud enough for me to hear all the way in VA on Monday ya hear?! Hang onto your mask too... we'll see if we can arrange a mask burning party

Positive thoughts

"T"

Mask burning party ... heck no ... I'm using mine to scare the bejesus out of the trick or treaters at Halloween.

Jason will have NOTHING on me.

Of course my house will likely get egged or wrapped as a result. LOL

So it is finally over!!! I am so pleased. Of course, it couldn't finish without drama. The pain from the neck burn without the cream was so bad today that I have spent most of the 75 min ride to the hospital crying. And then cried some more during the final rad treatment, because the mask made it worse. I was/am quite embarrassed about it, I felt like a little kid. The crying was not emotional, it was a pure reaction to the physical pain that I just couldn't control. And I did take oxycodone, which didn't make much of a difference.

I took the stupid mask with me home, haven't decided what to do with it.

My RO has apparently changed his mind about the PET scan, at least the first one, he said I should have one in three months. He stated that the reason is that my rads were unilateral, they only irradiated the cancer side. Apparently there is a risk, he said under 5% chance that the cancer could come back in the lymph nodes on the opposite side. While I am quite glad I will be getting the scan, now I am worried about this possibility, which I frankly haven't previously considered.

I will worry about getting the more sans when the time comes. My RO admitted that his team/department tends to be on the side that gives as few of scans as possible. He didn't quite explain why, tough he mentioned something along the lines of what "T" wrote above.

Congrats Ambra - treatment finally over, now you can get on with your life, think Italy next summer, enjoy the sun, the wine, the food, all those good looking young Italian men, dancing until dawn.

Okay, now quit fantasizing and come back to DC. It looks like you are doing exactly what Bart told all of us not to do. Doctor says there's a 5% chance of getting cancer on the other side and you start worrying almost immediately ... stop that.

There's a 95% chance that nothing will come from it. Whether it comes back or it doesn't you have no control over, so why worry about it. If it comes back then you and all your brothers and sisters in this family will face it and fight it together, just like with this first battle. You are plenty tough enough to get through it, same as you were this time.

Sure it's easy for me to say all this, but I was tested myself just yesterday. I had a follow-up chest CT Monday a week ago after they found two small areas of interest in lower lung on first CT at time of surgery. They had not given me the results a week later. One part of me said no problem, any number of reasons why it's taking longer than normal to get the results. Another part of me said they are waiting until they can tell me to come to Little Rock (and bring someone with you) to tell me the results. Of course, all these thoughts occur when you first go to bed. If I had let them, I'm sure I could have worried about them for hours and possibly get no sleep at all.

Fortuntely, when I go to bed, I'm usually beat, so I just say screw it, I'm tired, I'll worry about this tommorow (if at all). Tomorrow came, the sun rose in the sky, I'm still alive and the all's well telephone call came. Areas of interest have not changed size, come back for another CT in 6 months. I didn't even think to ask them why it took so long to get the results.

Ambra, stop worrying, you are going to be fine.

Don't make me get on a plane and come to DC.

Tony

Congrats on getting through it my dear.... try not to worry. 5% is nothing in the long run... think positively and take time to heal... be patient. hugs

Ambra,
Glad to hear you are done with the daily dose. Just a few weeks and things will improve. Meanwhile, you MUST get the pain meds reviewed as you should not be in pain. In fact, your recovery can suffer because you are in pain, so get that looked at asap.

The daily mantra is NUTRITION - HYDRATION - PAIN MANAGEMENT.

I guarantee you focus on just these three things and you will get through this as smoothly as is humanely possible.

Don