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

Dan,

I am sorry to restate what has already been said in this posting, but.......... way too much info there! I firmly believe that, when properly informed, you are your own best advocate, but these test results are replete with information that is, or should be, over the head of most patients. I know you went in with sufficient background info to accept scan results for what they are, imperfect. If you trust you doctors, and you appear to, I would look for a less detailed report next time. I get mine, "no evidence of reoccurrence or metastasis". I usually follow-up with a few obligatory questions and try to move on. Of course I'm going for my first pet-scan today, 18 months out, and I'll probably be singing a different tune next week! I'll admit that in my mind I don't anticipate the longevity I once expected, but I have managed to control my anxiety over theses tests. You seem to being doing so well, enjoy it and GET BACK TO WORK. I have been back one year this week and it is a life saver.

Glenn

While I won't go into the whole list here, my recent PET had things on it that I couldn't even imagine. Just listen to this and realize all the stuff that is in here, and then try to sort out something I'm going to choose to worry about. Mildly prominent bilateral activity near the vocal cord musculature...hell, this is from talking to the tech after the admin of the injection. Non-focal activity in the right posterior chest... more BS, this is after effects of the treatments. OK one worth looking deeper into... Physiologic activity is seen within the heart...the activity is suggesting possible coronary artery disease. That one made me step back a bit since last month I saw a cardiologist had a treadmill stress test, etc. etc. and he said I was good to go...there were ( from a cardiac standpoint) lots of good miles left on the odometer, and that given all that I had been through I was in great shape... for a 98 year old woman!! ... (just kidding, but everything looked pretty good to him) But I will be seeing him again now with the PET results to see what his take is on all of it. Remember the radiologist, as part of his due diligence, reports EVERYTHING but does not interpret it. There are likely degenerative changes to the shoulder bilaterally. Crap I'm no spring chicken!! Of course my shoulders aren't what they were when I was 25, and I survived a couple of helicopter crashes in Vietnam where I got busted up a bit. And I worked hard as a young guy doing work in construction so that all makes sense. Nothing like spending a few years moving around concrete blocks and lumber ( this is how you start out in construction, doing everyone else's grunt work) to put some degenerative changes in your shoulders later in life. There are degenerative changes of the hips...yeah, yeah... age and falling out of the sky in flying machines that quit flying, and hit the ground hard again, and there was that time 20 years ago when I dumped my Harley on a gravely blind corner when some idiot in a four wheel box came around the corner in MY lane...That hurt like hell and caused a little hospital time. And this is only part of ONE page out of three!!!! Lots of this stuff is just wear and tear of being an old fart that has had a full life of being a normal guy. So take a deep breath, don't go looking for the boogie man, and review again in 90 days. By the way next time ask for a PET/CT fusion scan. If you have metabolic SUV activity somewhere yet there are no positive matching irregularities, nodes, whatever on the CT that corresponds with it.... it is usually just a result of the treatment and healing. You aren't a doctor. And even some of the doctors out there are not that good at interpreting this stuff. It's a "grey science" without absolutes or finite rules, it's open to interpretation of the reviewer. Keep perspective on things. Don't lose sight of that point.

Brian,
you crack me up LOL!!! 98 year old woman indeed! I had completely forgotten all about all of the "degenerative" stuff (and not the mental kind either). I think moving Hammond organs and all of the pro audio sound systems around (not to mention a 20 lb. bass guitar for over 40 years) is what did me in.

THANK GOD IN HEAVEN that I am getting my sense of humor back. This damn disease almost completely stole that away.

And for Karen, my baseline scan was an MRI for what its worth. And it wasn't exactly your optimal baseline scan either :p obla di obla da

And for Dan - be sure sure to tell your wife you love her for putting up with you - you can tell I told you to.

Thanks to everyone who's been posting here. It really helps to have a little bit of humor applied to such a stressful event as post-treatment scans.

I remember my husband's first post-treatment CT scan. Our radiation oncologist knew I was really stressed about it and so, when he happened to run into us in a hospital hall about an hour and a half after the scan, he invited us to come to his office. There he proceeded to dial into the hospital's recorded records system and play for all of us the report of my husband's scan. I think I wore a track in his office pacing around while we listened to body-part-by-body-part interpretation of the full body scan. I'll never do that again.

Anita

Thanks for all the advice.

Sometimes I need to step back and look at the big picture!!! I am returning to work on Monday. I always tended to focus on one thing during this ordeal, "Will I survive"? In the meantime I have come a long way. Being able to eat, talk, and enjoy things in my new life. I am sorry if I came across as a nervous wimp. I think it's time for me to step away from the board for awhile. It's hard to step back as I enjoy my new friends and future new friends. Thanks for all your help.

Dan Bogan

Dan,

There are no wimps here! I just got back from MSKCC where I had my very first pet-scan (I am 18 months out). I almost cried when, after giving me the radioactive injection, they told me to drink the huge bottle of barium stuff! And I don't consider myself a wimp. If the boards offer you comfort don't step away, just keep everything in perspective.

Glad to see you too enjoy Baseball as an escape from all this cancer stuff (are you talking about Randy Johnson AKA "The Big Unit").

Glenn

Daniel,

I wept as I read this thread tonight. Everyone has rallied around you to lift you up just as you have lifted up so many time and time again on this board. My heart is full of joy for you. You have not wasted away the time during your cancer treatments and recovery like some people might be tempted to do, but instead you have made yourself a friend and guardian angel to those of us still trying to find our way through.

It's your turn now. You can release the breath you didn't even realize you were holding.

Christine

Oh sure! leave while we are having such fun?

You didn't sound like a big wimp...maybe we were hasty in doing "damage control" just in case you "might" be a wimp

I think you will enjoy work!

Dan ...don't step away, you now have insights that are valuable to others, coming down the path behind you, and the compassion you show others here is unconditional. You are a valued part of this community, this band of brothers and sisters, and while I want you to keep perspective, I want you to know that you are needed here by others as much as you need to still have your own questions answered. Cancer will always be part of who you are, and you will wear it with trepidation sometimes, comfort sometimes, and at other times it will only be a small hum in the background that is barely audible. You can't change who the new Dan is, and you shouldn't try. The new Dan is a better man for the experience that he has seen through to the end, and you now have a story to tell. One of fear, followed by acceptance, then by a fight ,and now by victory, even if some insecurities still live within you. It is a typical mythical hero's journey story and others need to hear it. You can't bury what has happened and put it behind you, you have to integrate it into who you are now. My guess from all of your postings is that you will be the teacher in the future............. you have graduated with honors, and it is your turn to pass on your experience driven knowlege. No one who has not traveled this path can do it better than you can. Stick around, 'cause this is the part where the real satisfaction and rewards begin. So don't you even think about going away for awhile, like Mark said we're just starting to have fun. You've got work to do here and hands to hold!!!

Dan, what Brian has posted (twice even ) is very true. However, I understand the need to step away from time to time. Sometimes the cancer I used to have becomes too much a part of the present. In my case, I usually have two or three or more patients, referred to me by my docs, who I am hand-holding through their treatment by phone, e-mail, and in person, so a little breathing room becomes necessary. Go ahead and step back if you feel the need, but I think you will feel like returning sooner rather than later.

Dan, I wonder what triggers your thought of stepping away from this board. You have always been a very supportive and encouraging member here and many have been helped by your insightful advice. Is it because you feel discouraged after hearing the scan report? Or is it because you feel too tired to share with others? I hope this decision is not a sign of emotional turbulence or intentional withdrawal. It is good that you will resume your work next Monday but before you go back to your work place, I think another type of anxiety appears (I hope I'm wrong). My job as a senior administrator in a secondary school is very demanding and yet squeezing some time every day surfing on the OCF releases some of my tension and adds some color to my life too. I don't mean to interfere with your choice as no one thinks alike. I just want you to know that your contribution has been very valuable and staying away from this big family may not be a wise decision.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Hey, folks, is it possible that even though a few days ago Dan said he felt calm and was ready to accept whatever news his scans revealed that he was actually NOT ready to get results that don't give him the definitive answers he needed/expected? Maybe that is such a let down after all the tension that all he CAN do is step away and figure out how he feels about not really KNOWING. I went with my sister to the dr. this week to learn of her yearly CT results after undergoing treatment for lymphoma last year. Everything on the report looked great except for some line about "focal hypodensity of the left lobe of liver" and that it needed to be watched. Even though the report said it was probably a couple of things (probably not mets), she left there feeling numb. I wanted to cheer for her because it really was a good report overall, but that one line took away what would have been a happy occasion. She went home (she lives alone) and didn't answer her phone for two days. I had to let her have her space. She has to come to terms with it all on her own, and so does Dan. Dan, whatever you do, we are behind your decision 100% because only you know what is best for you. Nobody means to be pushy or too assumptive; we all care about you and hope you are OK.

You've gotta admit that some of these folks are pretty darned endearing

Christine

Dear Daniel,
I have 7 children, 2 step children, 3 grandchildren, and a second family consisting of approx. 300 other families (my gyms). Two kids in college, two needing braces, two in private school, one wanting horse back riding lessons, husband wanting to buy a $1000 treadmill, and I need a new dryer...............my point being that I am broke over all of this, not a penny to spare. A trip to Wisconsin is just not doable. Please stay on the boards and let US help YOU.
Love, Minnie

Christine...Just a passing comment about the liver hypolucency. These are normally a cyst or a hemangioma, both benign things and I had my heart sink too when they showed up on my scans by accident at the bottom of a lung CT, where the top lobe of my liver could be seen. We chose to do nothing, and wait 4 months to have the spo

Thanks, Brian!! I'll pass it on!
Woooooooooooo Hoooooooooooooooooo!

And Dan, when you return here and see all this love, I know it will make you feel better!

Christine

I want to thank each and every OCF member who wrote reguarding my scan results. I only wish I could meet each and every one of you for a group hug. That would be so cool!!! Please don't worry about me, I am feeling much better thanks to all the good advice. I love each and every one of you.

Your Friend, Danny Boy

Dan, you're a great guy. Your support to me and everyone else on this board has been incredible. My thoughts and prayers are with you and your family. Stay strong. If there's anything I can do to help you, just email me.