I haven't posted in a long time. My huband Stephen is coming up on his two year since diagnosis date and he had an appointment with his oncologist at Dana Faber today. With his 2 year since his last treatment date coming up I asked him to ask when his 2 year scans will be and much to my surprise he was told that they will NOT be doing any more scans, only scoping and chest xrays unless he becomes symptomatic. I am a little uneasy about this. They said it is standard practice but I don't like it.
Just curious what you all thought...
Kerry

My doctor, (surgeon), doesn't believe in scans either. I didn't have one after the second cancer for 5 years when I finally asked for one to verify a small, what turned out to be non-problem. CT scans do expose you to additional radiation so MRIs are preferred. I can't do them because of claustrophobia. My doc says they didn't use to do yearly H&N scans but now if I want one once a year, I can have one. I have some lung/pancreatic problems they watch so get run through CT machine below the neck once a year anyway. You can probably talk them into it if you are persistent.

Take care,
Eileen

I was at Dana Farber today, too. I meant to ask when I would get another scan and I forgot! Hhhmm...I thought there would be yearly scans after 2 years.

I have had so many CTscans, PetScans and MRIs, it's a wonder I don't glow. All of these in less than a year. I sometime wonder if maybe I have had too many. But they do show things that the Dr needs to know.

Found out at rads this morning, another MRI the 12th LOL I just gotta er that bright look. LOL

At 5 years they finally gave me a spiral CT and a couple of MRI studies - one for the eyes and the standard H&N, orbit MRI. They didn't like the spiral CT, said I had "broken glass opacity" in both lungs. Now this could be ANYTHING from minor aspiration, inhaling mold, minor lung infection, side scatter from the radiation or the beginnings of adenocarcinoma. Instead of my 6 month appt. with the MO they shortened it to 3 and want an instant replay of the spiral CT (without contrast this time). I'm reading into this the fact they want a review in 3 months means that they are not terribly worried about it and neither will I. I had the MRI over 2 weeks ago and still haven't gotten a reading report back.

In answer to your question Kerry, yes it is the recommended NCCN followup protocol, although my RO from UCSF demands an annual MRI. The standard chest x-ray is also NCCN SOP. Scoping, mirrors and palpation are still the gold standard.

Scans are a mixed bag. Radiologists are bound to report every single anomoly they find, waiting for the reports and then having them sorted out can cause much angst.

Personally I would like to see an annual PET/CT as part of standard followup but it's all over the map which doctors, institutions and even countries have a standard in that regard.

Gary,

I'm sure everything will turn out fine. Hope so for sure.

Kerry - I am being treated at MD Anderson, and I am also coming up on my 2 year anniversary followup. My main doctor will only do a Chest x-ray and physical exam. This is the standard of care at MDACC. I did just have a CT scan on my last visit but that was because of some other symptoms I was having. (it turned out fine) Interestingly enough, most of the doctors at MDACC do not do routine PET/CT scans and don't seem to think much of them.

Gary, I hope everything turns out in your favor. You talk like a fighter to me and that is great. Good luck.

Gary,

I'll think good thoughts and mention your name for blessings. On one side I really hate scans and on the other I always say yes when my ENT asks me if I want to do one.

Tim

The MRI's were clear - no "areas of interest". I don't know how much of a fighter I am but I am under strict orders from my wife that I can't die yet ;-)

Congratulations on that Gary. your wife sounds like my kinda gal.I know just how she feels! Whew.....
Take Care
Marica

Great news, Gary! My husband has the same strict orders.

Gary, I'm sure you are feeling big relief - glad that the MRI was negative

Great news Gary!! You bring lots of hope to many here, and calm nerves that would otherwise be frayed beyond repair.

After my 1st post-treatment scan was kind of iffy, and while the results of the 2nd scan a couple of months later were pending, my wife said something to the effect of "That scan does not DARE come back anything but clear." If you saw the look in her face, she meant it, too!

Kerry,

I am at 2 years too. I had Ct scans done. My next scan will be in 6 mo. If you are uncomfortable with just the scope & Chest X-ray, then let the Dr. know.

It is unfair to be mentally upset, we go through enough. Just tell him you would feel much better at this point if a scan was done.

Gary, Glad to hear the good news. The 2 year check seems to be working for a lot of us, so far.

Take care Kerry and don't be afraid to speak up for yourself.

Diane

I believe that the 2 year mark is significant because if a recurrence was to occur, in the original tumor bed, statistically it would be in the first 2 years (95% I believe - 80% year one and 15% year 2). At 2 years I began to worry more about locoregional and distant metastesis and wanted more scrutiny in areas other the H&N. Unfortunately there are no NCCN guidelines for followup for locoregaional or distant mestastis screening. This affects what insurance companies are willing to pay for what and HMO's are willing to do. There are exceptions - some doctors will order them, espcially the PET or PET/CT. Most likely it will be your MO or RO and most ENT's or H&N surgeons don't prefer scans.

Congrats Gary, Hope to see you here on your 10th anniv. too.

HI GUYS NOW I NEED some advice im waoiting on my pet scan thursday they move it up a month they saw a nodular on my vocal cord .im just 6 mos out of tx. idont know how to ask thiswhen does accancer metasias would you know