Hello to all my friends at the OCF Board.

I saw my rad guy first at 11am and the report reads like this:

FINDINGS:
Comparision is made with prior radiotherapy planning CT scan of 9\3\03 and with subsequent MRI scan of the neck from 12/24/03.

There is marked distoration of the anatomy as a result of the extensive prior surgery including myocutaneous flap. There is some focally increased activity within the posterior right tongue with maximal SUV of 5.01. this is anterior to the myocutaneous flap. The etiology of this is uncertain. Just above the right tonsillar fossa and posterior flap is in an area of focally increased activity with maximal SUV of 5.05.
There was some vague soft tissue shown in this area on the MRI scan of about 6 weeks ago. There is also some increased activity involving the posterior soft palate from right to left with maximal SUV of 5.09. Around the perimeter of the myocutaneous flap, there are multiple sites of increased activity. Anteriorly, superiorly and
medially there is an area with maximal SUV of 3.27, and more inferiorly and posterolaterally there is an area with maximal SUV of 4.4. It is uncertain how much of this is due to granulation
tissue. Focal tumor cannot be excluded. There is also some increased activity seen in the region of the left palatine tonsil with maximal SUV of 4.32.

There is really no major pathology now shown in the area that previously demenstrated contrast enhancement around the right piriformsinus. Therefore, that was probably just due to postoperative scarring. There is no definite malignant lymphadenopathy within the neck or chest. No pulmonary or hepatic metastases can be seen. There is no evidence of osseous metastatic disease either. No other significant abnormalities
are shown. Incidental note is made of some increased activity around the PEG tube consistent with granulation.

IMPRESSION:

Multiple sites of increased activity around the operative bed, and it is uncertain how many of these are due to granulation tissue associated with the prior surgery and radiation therapy versus how many of these areas could br residual neoplasm. Followup study will probably be needed. MRI scan could be repeated or repeat PET/CAT scan
performed. The increased activity within the right tongue is also of uncertain etiology? if ther could be neoplasam in this area.

increased activity in the region of the left palstine tonsil which is nonspecific? inflammatory
versus neoplastic.

Also slight increased activity seen involving the left anterior abdominal wall in the region of the PEG tube consistent with granulation tissue.

I also was scoped down my nose by the ENT and he said everything looked fine. He tempered this by saying the pech flap is covering the surgical bed so he really can't see that area.

I am concerned about this report long term, My wife was happy with the report as it doesn't show cancer but they can't really say one way or another. Scheduled for another PET/CAT scan in three months. Guess they will have more diffinative answer for me by comparing the two scans.

Thanks again for all the support and emails.
Your friend, Danny Boy

Hey Dan,
Been looking today for your report. I agree that it is hard sometimes to understand exactly what the report is actually saying, but I agree with your wife....PRAISE GOD - no show of cancer. I am soooooo happy and excited for you guys and can't wait until we hear that kind of good news.
Way to kick butt!!!
Debbie

Hi Dan, no one on earth can really tell you that you are cancer free for the rest of your life. The scan shows your present status only and I can feel the anxiety is still with you knowing that there are still areas of uncertainty. But the fact that the scan is scheduled for the next 3 months and no positive cancer cells are detected now are good news enough for you and your wife to celebrate! I have never read a full report of any scanning tests and usually my oncologist just told me' nothing abnormal, still in remission' and that's it. This alone could make me feel relieved for quite a while and then anxiety returned when the next appointment was near. Dan, you have already done a very good job and simply stay positive!

Your friend Karen.

Karen stage 4 tonsil cancer diagosed in 9/01.

Hi Dan. Well you got one of those vague reports like I did the first time. My neck where they did the radiation and surgery glowed like a 40 watt light bulb. They didn't know if it was from the radiation or still had cancer cells. Also showed cell activity in the soft palate, a couple of other places.

So, repeat scan after seveal months, less activity on the neck, other places. But the second lymph noded metastisis showed up much brighter, no doubt what it was.

Pet part of the PET/CT shows healing tissue as well as tumor tissue, except the healing tissue s hows up at a lower SUV. Did you get to see the actual scan films themselves, the composites and such?

These first reports sometimes cause some concern because of residual uptake, but next scan in 3 months should tell if it's from the healing process or not. My guess it probably is.

What does the radiation oncologist have to say about it?

Hang in there.
Bob

Hi Daniel,
I know we are all different in what we need through this process of having/had cancer, but I can say that I have never asked to read a report. When I go to my appointments, I listen to what my trusted doctor tells me, knowing that he will tell me if I need to be worried on anything. Sometimes to much information can do harm. I also think that the people reading and reporting these scans play it SO SAFE that everything is vague, leaving room for doubt either way.
In your position right now I would be asking myself one question............Do I trust my doctor???? If my answer was yes, then I would be dancing a jig because he said I didn't need another scan or anything else for three months. Your doctor must feel damn good about it all. If my answer was no then I would be at another doctors office the next day.
Take care and please, please celebrate this..........in my heart I know you are fine.
Love, Minnie

Dan....PET's by their very nature are vague, Even a fusion with a CT only sharpens things a little bit since they are not specifically diagnostic for cancer. I think your doc has the right idea, 90 days and in the tube again. You want to be seeing the SUV values dropping not increasing at that time. Especially this close to your treatment, PET's really run wild. So don't put too much weight on this one, over all it isn't bad, but you want on the next one to see the SUV getting closer to 2.5. Now it is time to just take a deep breath, you have a baseline of data, and until the next time there is no sense in worrying about what is there or what is not. You needed this as a starting point. While not perfect, it is also not completely off the scale either. The trend will be where the sigh of relief finally comes. Even then I can tell you the anxiety still will never completely go away. I just had a PET last week, 5.5 years out and they always find something that isn't normal, since we will never be normal again with all the scar tissue and changes to our bodies from the original disease and the treatments. My results were 3 pages long, and were full of ambiguous things.... but here I am still on this side of the grass. Stay balanced and stay positive. Stay vigilant to changes in your body. You will be the first one to notice the subtle changes not the doctors. I have a plaque on the dash of my aerobatic plane that applies to this mentality in cancer survival and in flying both. It reads, "Eternal vigilance or eternal rest." We all must be vigilant the rest of our lives to look for changes, to get our routine and regular testing, and to keep our thoughts in control, not letting fear control the quality of our lives. For the next ninety days, let your mind try to go to something else. While not always possible, you need to.

Hi Dan,

For what it is worth (and Karen read it the same)QUOTE: "There is no definite malignant lymphadenopathy within the neck or chest. No pulmonary or hepatic metastases can be seen. There is no evidence of osseous metastatic disease either. No other significant abnormalities"

Do you remember in class where we say IT ain't cancer until they say it is cancer. Well what are they saying?

Hi Dan,
frankly I am surprised that they even gave you a PET/CT this early. My impression is that typically they wait a year. My early MRI's all had abnormalities and they all turned out to be nothing. Minnie has a good point that sometimes there is just too much information and you can drive yourself nuts. The reading radiologist is going to take the most conservative approach and leave it the the head & neck guy to sort it out. This can be very unnerving if you like to read these things. I remember obsessing over blood test results. I stopped myself short of doing a trend analysis on the numbers. I finally got to a point where I don't care anymore. In the beginning I wanted a "clean scan" to validate that yes indeed they killed it good! But in the ambiguous language of the radiologist I never got that satisfaction. I'll take the "look's good" from the head & neck guy's visual and palpation exam any day.

I applaud them for being vigilant however which is extremely important in the post Tx.

One more thing I want to share here. Sometimes knowing too much may not be a good thing. I remember when I attended the first follow up appointment with the scan report ready, the oncologist told me no further investigation or treatment was necessary, I was relieved but then he referred me to the ENT doctor next door for a chat since he was the original doctor who started my file and he should be interested in knowing what happened to me.The ENT doctor showed me the report print out and I saw these words: the tumors size decreased significantly.... I frowned and felt worried again because it meant the tumors were still there and only grew smaller. (At that time I hated myself for understanding English!). These words appeared in my mind all the time and my anxiety intensified until I had the next scanning. After this experience, I just took my doctor's words without asking for a full report. Minnie is right!
Gary, I don't know if there is any set norm of when the base line scan should be scheduled but in my case I also had it two months post treatment, not one year. Dan, Brian's advice at the end of the post is definitely valuable.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Dan,

I'll jump in here also and say that sometimes too much information is overwhelming. As when you ask for copies of all your records (yes, I did that)
Wasn't agreat feeling reading all the medical terms.

I actually took a highlighter (over the top)and asked my doctor specifics. Bless him he is a patient person.

Trying not to worry for three months will be very hard on you, but you have faced this head on - with a positive attitude since the beginning and I'm sure you will continue to do so.

Don't you return to work soon? That may help take your mind in other directions for three months.

You take care,
Dinah