phranc2002 Posted November 21, 2007 Share Posted November 21, 2007 Hi all, Glad to have found this site and hope someone can shed some light on my situation. Long story short... Had cancerous lump removed from my lip, clear margins around site, had PET done then we move to the following... So I go to the ENT's office to p/u copies of medical records for the insurance company that the ENT had ready for me. I ask the receptionist for the records and she hands me an envelope. Now, follow this, my follow up appointment to get the results of my PET was scheduled for 12/4. I was told after the PET that the radiologist would have them read by the afternoon of the test. I asked for an earlier appointment since the results were probably in. She told me they did not get them yet but did move my appointment to 11/26. I get home and am curious about my records thus far. I open the envelope and begin looking through the forms. Well I guess you already know what was included in the records... That's right, THE PET report! So I am asking for some interpretation... Neck: No evidence of hypermetabolic activity. Normal physiologic activity is identified. Thorax: No evidence of abnormal hypermetabolic activity or suspicious nodule. There is a 2.9cm soft tissue density just left lateral to the AP window. This demonstrates borderline hypermetabolic activity of SUV 2.5 and is non-specific. Abdomen/Pelvis: There is no evidence of abnormal hypermetabolic activity. Normal physiologic activity is identified. So my interpretation is that I seem to be clear of oral cancer but now am concerned of something in my lungs? The radiologist writes in the "impression" section of the report, "...further evaluation with a dedicated enhanced CT of the thorax may be helpful as well as close follow-up. A non-hypermetabolic metastatic focus is felt much less likely in this location." Any idea what that means? I now think I need to look into getting to the cancer center to check this out as I believe this is now out of my ENT's realm of expertise. Could this be lung cancer? I don't know. I have been chatting on the oral cancer board these last few weeks. Now I learn of something in the thorax area. Can anyone shed light on the "thorax" part of this report? Thanks Quote Link to comment Share on other sites More sharing options...
RandyW Posted November 21, 2007 Share Posted November 21, 2007 ok Frank welcome and now I am gonna recommend you check the Ask teh expert forumand post this to our resident oncologist Dr West at his site. He is linked from ask the expert forum and registration is free also. He is prompt to answer and is a cerified Lung cancer oncologist. keep us posted and hope that helps get an answer for ya!! Quote Link to comment Share on other sites More sharing options...
Tom K Posted November 21, 2007 Share Posted November 21, 2007 I am not a doctor, I have not played one on TV and I have never stayed at a Holiday Inn Express. Most everything I know about medicine I learned from the internet or watching medical shows on TV. So consider the source when you read this. But, I think the radiologist who wrote that report is indicating that there is something in your lung but it is probably not metastatic cancer. It could be an infection or inflamed tissue of some type. A 2.9 cm mass is a little on the large size. As I understand it, If it was cancer, it would probably have a much higher SUV than the 2.5 that was reported. My tumor was 3.4 cm and the SUV was 12.5. When it metastasized to the lymph nodes in the center of my chest, it was only 1.2 cm in each node, but the SUVs were at 4 and 5. Now having said all that, you should definitely talk to a real doctor and get a real medical opinion. Randy is correct, Dr West would be the best source to get a quick interpertation. I hope you can relax and enjoy the holiday weekend. Quote Link to comment Share on other sites More sharing options...
phranc2002 Posted November 21, 2007 Author Share Posted November 21, 2007 Thanks for the direction! Quote Link to comment Share on other sites More sharing options...
RandyW Posted November 21, 2007 Share Posted November 21, 2007 keep us posted frank don't leave us in the dark though, ok?? Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted November 21, 2007 Share Posted November 21, 2007 Hi Frank and welcome I cannot shed any light on your PET report but wanted to wish you all the best... Randy made a good suggestion.. Dr West may be able to help you out with the report. Best of luck and please do let us know what happens. Warmly Christine Quote Link to comment Share on other sites More sharing options...
Adrian Posted November 21, 2007 Share Posted November 21, 2007 Same caveat as above. Not a doctor, OncTalk is the way to go. This is what I take from the impression section: "...further evaluation with a dedicated enhanced CT of the thorax may be helpful as well as close follow-up." The CT scan will give them a better idea of what the mass looks like. "A non-hypermetabolic metastatic focus is felt much less likely in this location." These are nice words. It tells you that the reviewing radiologist does not think that the density represents a cancer spread from the oral cancer to the thorax (which would be a bad thing). This would mean in the event that it was a lung cancer (which seems doubtful but not impossible), it would based on the otherwise clear PET, one limited to a single mass and may be otherwise removable and therefore curable (a great thing). Quote Link to comment Share on other sites More sharing options...
ernrol Posted November 22, 2007 Share Posted November 22, 2007 Frank, I am no expert, but an SUV of 2.5 is low for cancer. I was told concern came when it is above at least 4 SUV. After you get your report on the 26th you will know more. Sit down and write down all the questions that you want answered also I recommend that you take someone with you. Four ears hear more than two. Then after you get all the info I would then consider a second opinion. At some point a biopsy should be done. Keep us posted. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
phranc2002 Posted November 22, 2007 Author Share Posted November 22, 2007 Thanks all. I will keep you posted! It feels good to hear that we are not alone in our journey against such a terrible disease. Happy Thanksgiving to all! I am frying a turkey today for the first time. I hope all goes well! Quote Link to comment Share on other sites More sharing options...
barbara5452 Posted November 26, 2007 Share Posted November 26, 2007 Welcome Frank, the radiologist reports can be very hard to interpret, I agree that Dr. West at onctalk would be the place to start. Good Luck Quote Link to comment Share on other sites More sharing options...
phranc2002 Posted December 5, 2007 Author Share Posted December 5, 2007 ENT said that there is a spot near the heart that lit up on the PET. Says the heart always lights up. Said I am due for a chest x-ray at age 40 (1 year from now). Said I should have it checked then. I think I will take all the reports to my GP and get a second opinion. Don't want to take any chances. Thanks for all of your support. Quote Link to comment Share on other sites More sharing options...
phranc2002 Posted December 22, 2007 Author Share Posted December 22, 2007 Hi all. Sorry I have been away for a while, but you know how the holidays are. My GP ordered a CT of chest. Had it done Thursday. I should know something Monday. Quote Link to comment Share on other sites More sharing options...
recce101 Posted December 22, 2007 Share Posted December 22, 2007 Frank: Good for your GP. Let us know what the radiologist says on his CT report, but expect that he will hedge his words too. A pulmonologist may be next. Best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Judy-OK Posted December 22, 2007 Share Posted December 22, 2007 I for one would not even wager a guess ... this is EXACTLY why I never want to see my records or any reports. LOL I am an ostrich. Quote Link to comment Share on other sites More sharing options...
antonella Posted December 23, 2007 Share Posted December 23, 2007 Hi I'm having a hard time how to do this chat thing. please let me know if I'm on thanks Antonella Quote Link to comment Share on other sites More sharing options...
antonella Posted December 23, 2007 Share Posted December 23, 2007 good it looks like I'm on. I have a question. Apparantly I have been diagnosed as stage 1A according to the cat scan and needle biopsy, but I have been nautious, lost appetite, weak and have lost 10 lbs in three weeks. My worry is that it is further than stage 1A. Does anyone know these symptoms? Quote Link to comment Share on other sites More sharing options...
phranc2002 Posted December 25, 2007 Author Share Posted December 25, 2007 Antonella, Click on "New Topic" and start your own post. Your question may get lost in this thread. Quote Link to comment Share on other sites More sharing options...
RandyW Posted December 25, 2007 Share Posted December 25, 2007 one of our Administrators has switched topic on to separtate Posts i believe in NEw members forum Frank. We gotcha!! Quote Link to comment Share on other sites More sharing options...
phranc2002 Posted December 25, 2007 Author Share Posted December 25, 2007 Merry Christmas All! Hope this message finds you enjoying this time with family and friends. I am a bit nervous this morning. My GP called yeterday and got my wife. Said the radiologist needed hard copy of PET scan to compare to CT scan. Without the PET test to compare, the CT alone reveals an "area of concern". What does that mean? How does having the PET scan make the CT scan more or less of a concern? I think back to the ENT telling me not to worry about the spot in the chest that "lit up" in the PET. Said the heart always lights up. It's hard to trust the Doc when he tells you stuff like that. Maybe it's nothing. but what if it's something! What if I waited til I was 40 (another year)? Yikes! I digress... When my wife told me what the GP said, she wasn't emotional. That made me feel better. My wife gets emotional at the drop of a hat. However, the words "area of concern" concerns me. When I tried to call the GP back, his office had closed (half day on Christmas Eve). I immediately called the hospital where the PET was done to get the copies of the PET. To my surprise, the lady in radiology told me to give her a couple of hours and she would have them ready. (On Christmas Eve? I thought that was wonderful!) I arreved a couple of hours later and picked them up. I thought that was a great Christmas Present! I felt better to have them in my hands so that I can get them to the GP as soon as they open. GP told my wife that they would re-open on 26th. Answering service says they will re-open on the 27th. I hope the GP's date is correct. It's been a hard 22 hours since my wife told me the news. All of a sudden, everything bothers me. My chest hurts and my mind wonders. Every time I cough, I get anxious. The sub-conscious mind is a terrible thing. We went to vigil mass last night. The priest's homily seemed to hit home. Like he was talking to me directly. I felt at peace. Christmas with the family opening presents seemed to take my mind off of it. I am getting ready to start cooking Brunch for the family while they enjoy their gifts. The best gift I can get now would be a clean bill of health. I watched my mother lose her battle with breast cancer two days after Christmas in 1988 as a freshman in college. What a horrible disease. I would hate to see my wife and kids go through that. I know all of this rambling is pre-mature, but I am getting ready to fight if this turns out to be cancer. I am thankful for having found this site. Reading the stories and talking about it seems to help. Have a great day!!!! I'll be back later in the week to let you know what they say. Oh one last question... If this turns out to be something bad, How agressive should we be with the treatment? What I mean is, do we go for the big mamma jamma treatment to start or something smaller and build up to the big stuff? Thanks! Quote Link to comment Share on other sites More sharing options...
Welthy Posted December 25, 2007 Share Posted December 25, 2007 Frank, For what it is worth, I found myself freaking out over a PET scan one time where a huge area lit up, while the rest of my husband's tumors were shrinking. The oncologist laughed and told me it was his heart! Even the pulmonologist seemed unclear when she reviewed the films. Hoping for the same thing for YOU! I would suggest moving out of the GP realm and having an oncologist/pulmonary specialist review these scans and reports. Merry Christmas,take a deep breath, and try to enjoy your holiday. Welthy Quote Link to comment Share on other sites More sharing options...
Wendy Posted December 25, 2007 Share Posted December 25, 2007 Hi Frank, I am so sorry that your wife got the call from your gp right before Xmas. I don't understand why they didn't wait and contact you when they were around to discuss it further and ease your mind. I also have had areas of concern on my pet scans. I found out I had gallstones, an upset tummy (just had the flu), a bulging disk in my neck..... and no problem, no problem, no problem. The scans are so sensitive and if the persons reviewing them aren't super familiar with them, sometimes they want to take a second look. I hope you find some comfort tonight and receive "no problem" results from your doc soon. All my best, Wendy Quote Link to comment Share on other sites More sharing options...
Eileen Posted December 26, 2007 Share Posted December 26, 2007 Regarding areas of concern they are not always so especially when we tend to read the reports does everyone remember when i had the scan of the brain and was taking a peek on the screen, and went home and cried and cried, so sure my cancer had spread to my brain? It was my eye sockets I was looking at! And when I used to read my reports before my surgeon they sounded like I was going to die in 24 hours!!! and they were all good. The one time I read and thought it was good, surgeon wanted to go in and take a look as he was worried about lymph nodes (all was ok but so much for my MD degree) I realized I had no idea what I was reading so take a deep breath and take one step at a time!!! Easier said than done---I know Quote Link to comment Share on other sites More sharing options...
phranc2002 Posted December 26, 2007 Author Share Posted December 26, 2007 Thanks all for the support. Hopefully, I will know something tomorrow. Quote Link to comment Share on other sites More sharing options...
phranc2002 Posted December 27, 2007 Author Share Posted December 27, 2007 Hi all, Not sure if my postings should move to another area, since I am not a "newbie" anymore. Anyway, GP says he is 99% sure that it is not cancer. He consulted with radiologist who says there was no change in size of the spot since the PET scan in November. Said something about the lymph node being abnormal size. Not sure what that means. Said SUV was 2.5 and that they didn't worry til number was at 4 or 5. Seems like smeone made mention of that here in this post earlier. Wants to watch it and check it in 3 monts. I asked about removing it so that I can have peace of mind. He said that the radiologist thought the surgery to remove was more risky than watching it because it was not growing. Check it in 3 months? That seems like a long time. I was not comfortable waiting 3 months. Does that seem unreasonable for me not to wait the 3 months? He offered to refer me to a pulmonologist. I told him that I would like to go ahead and do that. I am waiting to hear about the appointment now. Will keep everyone posted. Thanks! Quote Link to comment Share on other sites More sharing options...
recce101 Posted December 27, 2007 Share Posted December 27, 2007 Frank: One thing I don't recall you mentioning is, what is the specific type of cancer that was removed from your lip? A follow-on question would be, is that a type that tends to metastasize, and if so, where? Maybe those answers have something to do with the "99% sure it's not cancer" statement. We have a number of "nodule watchers" in the group. I doubt if any of them can give you a magic technique that will eliminate your anxiety. It's human nature to worry, even when we know it's not productive. Maybe the pulmonologist can give you a more complete picture of the situation so you can focus on the half of the glass that's full. Actually, in your case, the full part is probably well over half -- maybe three-quarters or seven-eighths or more! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
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