Hi everyone. So I went and saw another doctor today and they made me feel much more reassured about the prognosis. My question is what would you recommend I do? This doctor wants to give me a PET scan and an MRI to find out how invasive the cancer is to make sure that the surgeon has a better idea of what he should be doing. This will push out the surgery date for another 1 to 2 weeks . The doctor I saw on Wednesday, however, wants to do the surgery on Monday without doing any additional testing. I have no idea what to do but I know time is of the essence. What would you recommend? Any info would be very much appreciated!

Was the doctor you saw today the one at the University of Colorado? That's a highly regarded cancer center (as a member of the National Comprehensive Cancer Network, an alliance of 25 leading facilities that put together the annual updates of treatment protocols). You can see the treatment guidelines here; perhaps they will clarify things for you.

If your last appointment was indeed at CU, do they plan to present your case before a "tumor board" to determine treatment? If the first doc you saw was a surgeon -- well, he's going to want to operate, because that's what surgeons do.

I'm sure others here will chime on pre-surgery testing and whether a week or two delay would make a difference. My husband didn't have such tests before his excisional biopsy since he hadn't yet been diagnosed with SCC.

The PET will not be accurate. You have just had a major surgery and have inflammation. This will make the PET light up with false positives. A PET should have been done prior to surgery. The doc could have seen how invasive it was before he went in.

I would strongly suggest getting a second, maybe even a third opinion.

Leslie, yes the doctor that suggested the additional scanning was the doctor at the University Hospital. He came recommended but did say that the decision was mine. Apparently he trained the other doctor I saw on Wednesday and both are highly regarded. I do believe that the information will be presented to a tumor board.

Christine, I had my biopsy last Friday to determine if the area was cancerous but I haven't had additional surgery yet. My tongue is just now almost back to normal. Will inflammation still show up on the PET scan if I get it on Wednesday? Everything is tentatively scheduled right now. How long is too long to wait for surgery since it's inevitable that I will need it? This was my third opinion... .

Sorry for posting all over the place. I meant to post this in treatment and procedure but made a mistake. Note to self, don't do this on a cell phone in the doctors office!

PET scans are often given after the initial biopsy to determine if the cancer has spread. Oral cancer typically spreads first to lymph nodes in the neck. If you have trauma to your tongue such as a biopsy, you could have some reactive nodes in the neck which could show up on the PET scan. I was told to wait 3 months after a procedure and between PET scans to minimize the risk of a false positive. However, 3 months is too long to wait under these circumstances. I don't believe an MRI has this issue, so if the doctor is recommended both I think that is a good idea. If any nodes do light up on the PET scan, the doctor will likely recommend a neck dissection to remove some of the nodes. This is a fairly common procedure with OC patients.

I've been dealing with OC since 2005, a recurrence, dysplasia, 4 surgeries plus countless tests, and multiple opinions each step of the way after the 1st surgery. In my opinion I would have the scans and postpone the next surgery until those results are know. 1 to 2 weeks isn't that long, unless your cancer is very aggressive. I don't have a medical background so discuss this with your medical team.

I believe in your other posts in your other thread, one doctor mention doing frozen sections. My last 2 surgeries were at Johns Hopkins and they did frozen sections during the surgery - it is a quick biopsy of areas of concern done during the surgery. I would push for this, while not 100 percent accurate, it does increase the likelihood they would "get it all" during the next surgery.

Don't worry too much about posting your question in the right forum, but it would be better to post all your question in one thread. It helps us understand your issues and concerns are in one place. Perhaps one of the admin folks could combine the 2 threads?

If you have the PET scan, you should be given instructions on what to eat before the scan (I believe low carb, high protein) and avoid exercise. I don't recall the whole list (would have to look for it), but this helps minimize false positives also.

To get optimal results from a PET you need to prepare. Drink at least 48 oz of water the day before. Also you should rest, avoiding exercise, carbs and sugar. The PET will pick up inflammation. I dont know if the swelling you have will affect the PET, hopefully not.

Good luck!!!!

Thank you Susan, I will ask them about the frozen sections. And thank you to you and Christine for giving me more info about the PET scan.

My head is still swimming. This is a lot of information to digest in a week! I'm sure you can all empathize. I keep thinking "is this real life right now?" Yes, yes it is...

As irrational as this may sound, my biggest fear about the upcoming surgery, whenever that may be (hopefully will know by Tuesday) is being intubated. How long is your throat sore afterwards? After my biopsy I had the worst referred ear/throat pain I have ever had, mostly because my tongue rubs against my back molar every time I try to swallow. I must be a wuss when it comes to pain because that was worse than my broken arm and it was only the biopsy. I am worried about having a sore throat on top of the referred pain. I know the doctors can give me liquid pain killers but what if I can't even get that down? Also, one of the doctors suggested using donor tissue to stitch over the wound to make a biological band aid. Has anyone had this done? Does it help? I am still praying that is the extent of what I need. Why can't Tuesday come faster?

Again, not sure if I should post the above questions in a separate thread or not, but I hope I can get some insight. I apologize if I sound a little panicked right now. I don't know if I am handling this quite as well as I had thought.

I understand your anxieties, fear of the unknown, and concerns cause it's your life.

My throat was sore for a few weeks after being intubated, more hoarseness, sintitis, after some surgeries. The last three, they had to go through the nose due to my limited mouth opening, and loose teeth, but it goes away.

The oral tongue hurts. Mine is Tonsil, BOT, but needed two biopsies of the oral tongue, one a punch and other incisional, and stitched up. That hurt, so you're not alone in that department. Convey your thoughts about pain to your doctor. After I had surgery, and in recovery, they always asked if I wanted something for pain, and always said, yes, being I know what may come later..more pain. In recovery, they gave you morphine, and in the room or upon discharge, oxycodone, Percocet or similar, which I always took, so my pain was minimal, if at all. Each surgery is different too.

The donor tissue is called Alloderm. They put it over my carotid artery to protect it back in 2011 during a radical neck dissection, and heard of others having it in the oral cavity. It's used in other cancer, and situations.

http://www.lifecell.com/health-care...-matrix/allodermr-tissue-matrix-defined/

Finally, waiting is the worst, try to keep busy doing things you enjoy, listing to music, reading, exercising, whatever. For me, information helped me with the fear of the unknown, so I always read up.

Good luck

Katherine: It looks like with all your worrying that you are attaching emotionally to future outcomes. Worrying how much this or that is going to hurt, how bad intubation will or won't be, whether the pain killers will work or not.

It will be what it will be ... worrying about it ahead of time won't change anything ... but it will drive you crazy and make everything much worse than it needs to be. It will keep you up at night, unable to sleep. In general it will just make your life miserable, but only if you let it.

Go read about forum member Bart. He has had a many year, many recurrence running battle with cancer here on the forum. Yet he has maintained a very positive attitude, one that he has shared with many others (including me), one that has worked very successfully for many of us to help us get through this very tough time of our lives.

The short version is to just calm your mind. Refuse to worry about all the little things that might go wrong. After all, you don't know that they WILL go wrong, just that they MIGHT. I know it's not easy to do, that's why I refer you to what Bart has written. Take the time to look him up and read what he has told so many of us. It really will make this horrible journey you and we are on a little more tolerable.

Now get to work, you have some reading to do.

Tony

Thanks for the information, Paul. I read up about that but turns out it was kind of a futile exercise since the doctor I saw for my second opinion does not think that Alloderm is the best idea. Regardless, thank you for the information and for sharing some of your experience.

Tony, you're right. Much easier said than done especially since I am a worrier by nature. I did take the time to look up Bart's story and on the off chance that he reads this it's very impressive and inspirational. I only hope to emulate the positivity that he and others here have shown. Thank you for the words of advice.

Update on me, not that it is particularly interesting or important: my surgery is scheduled for April 7th, 2014 and they do want to do a neck dissection. The MRI showed more depth than they had originally thought and they would rather be aggressive than sorry. So, I will have a 4 hour surgery and be in the hospital for a few days. He did say that I could refuse the neck dissection, but I'm not sure if I am willing to take the risk. I'm going back and forth. Like they say, sometimes you just have to bite the bullet. Now it's just a waiting game. I am supposed to graduate in May with my marketing degree (yes, it took me longer because of switching majors) so hopefully I can work something out with school. I will try not to worry about that either. Hope all of you are doing well. Wish me luck!