My husband's first post IMRT appointment is next week and I don't know what to expect. He had a partial tongue glossectamy and modified RND 12/14 (T2/N1) followed by 32X IMRT completed 3/21. He had far fewer difficulties with the treatment than most patients (good), but the pathology report from the surgery siad extracapsular spread was present in the lymph node (bad).

The ENT said 80% of recurrences happen in the first year. Are we likely to hear anything other than "no sign of cancer at this time?"

CG,

I pray you hear no sign of cancer this time and every other time. I get nervous with every scan I've had and I think we all do to some extent.

Let us know how it goes.

Tim

CG,

Good to hear your husband did not experience too many problems during Tx period. In my case I had and am still having quarterly follow-up scans and checkups by all 3 primary docs, rad., chemo and ENT. The main thing I listen for is "all clear and no sign of any cancer". I just break into a sweat and look skyward with praise each time I hear it. I'm sure you will be hearing of other things such as overall healing progress but no sign of the monster's return is the main thing.

My ENT also informed me that 80 to 90% of recurrences happened during the first year post Tx. I'm counting down the days for that one year to end. Good luck in wrapping up the details of the journey.

Bill D.

I remember all too well those first post Tx exams and always waiting for the shoe to drop. It gets better as time passes.

Is there a consensus on when the clock starts on the 1 year, etc. periods - do they start at the time of diagnosis or the end-of-treatment?

Seems like I've seen it both ways.

Thanks in advance,

Chris

Chris,
Most doctors will leave it up to you, I personally use end of Tx as my cancer free anniversary but I use the date of Dx occasionally as well - it's only a few months difference now.

Visit yesterday was about what we expected: no sign of cancer now; recovery from IMRT is progressing normally; next appointment in 5 weeks; 1st PET scan in 3-4 months.

I wonder whether we should start researching treatment options in the event of a recurrance now. It seems better to be prepared for the worst while hoping for the best.

Is there anyone out there who is in treatment for a recurrance? What did you do?

I'm not, and I think you'll drive yourself crazy if you start worrying about something that may or may not happen.

Even if it does, God forbid, options available now may be completely different than what would be available 5 or 10 years in the future anyway.

I think it's not only futile, it's fatalistic to worry about recurrance to the point of researching possible treatment options. You're just finishing up a major battle...savor that. Savor the chance at a new beginning rather than pondering the future.

Just my opinion, your milage may vary
Wayne

Hi, caregiver, I agree with Wayne's statement above. Something you might tuck into the back of your mind, tho, is that if there were a recurrance down the road, you are already much more prepared than the first time: you understand the language now, you know the Docs and the hospital routines, you both have dealt with the rigors of surgery and rad., you are familiar with the drugs, with Insurance issues, you know how to organize your time- in short, you are not an "enlisted gal" anymore, you have earned the rank of general in this battle! So enjoy the present to the utmost and let the future come as it comes. Amy in the Ozarks