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!

Ahh, the date of your surgery IS interesting and important. I start RT the day after and will think of you:) I know what it's like to be a worry wart ...

I keep thinking about the concept of "positive thinking" and how it can be a glib and facile term. But the simple notion of taking things step by step, one day at a time and enjoying the moment is valuable and kind of doable. It seems strange to get advice for living from "Breaking Bad" (haven't seen it all yet) but I keep thinking of Saul the lawyer and his "PMA": "positive mental attitude".

Not long till you graduate! Do you have to sit exams? What was your previous major?

And I do wish you luck. Take all the painkillers they offer. They won't want you to be in pain and there's no need to be.

About worrying - such good advice above when faced with all the unknowns and life changing decisions, but it might be well to consider how it boils down to just two things:
1) You can worry about all the things that could go wrong (which might never happen) OR
2) You could think about all the things that could go RIGHT! (which could very well happen )

After giving #1 sufficient time in your brain . . . one or two minutes, maybe - switch to #2. It takes practice, but you can do it.

Good luck on your surgery. The neck dissection sounds daunting but it really isn't that bad. You are numb and stiff post op, and you may have shoulder issues for a bit. I jumped right into physio after and my shoulder is nearly perfect now, but this takes patience and time, and determination to do your exercises.

Ultimately it is a small price to pay for peace of mind. ;o) You will get through it ok.

hugs. and good luck - read up on the surgery and what to expect.

Alpaca, I was an English major before I realized that business was more my style and allowed for a fairly diverse field of career choices! Although, I don't know if it helped me much because I still have absolutely no clue what I want to do . Thank you so much for the words of advice. Positive thinking is definitely something that I am working on and it's nice to hear that it is manageable. I have not seen "Breaking Bad" yet, but have been told it's good. Maybe something to do in the hospital? I hear it's on Netflix. I wish you the best of luck in your RT and will keep you in my thoughts as well.

Anne-Marie and Cheryl, thank you both again for giving me some encouragement. I am so grateful that I found all of you and this website. It has been tremendously helpful already. Hope you are all well.

Katherine, I did languages and English when I was at university in the 1960s. It was lovely at the time but in the end all I could do with my degree was to go teaching. Teaching is a noble profession but I wouldn't do it again: far too stressful for someone with my temperament. You have given yourself many more possibilities:)

Best wishes
Maureen

Hi Katherine - one more thing NOT to worry about: Taking a little longer to find the right fit for your major. It's more important to like what you are doing even if it takes longer to decide what that is. When I was a SOTA (student older than average) I was in College Scholars studying Languages (French, Spanish) and Psychology. One of my professors disagreed with my choice and expressed his disapproval with "What can you do with that major?" And the first job I got after receiving my undergraduate degree was Teaching French at a Psychiatric Hospital to high school students recovering from drug addiction and other emotional problems. Re how to fit everything in, just concentrate on your health - there are all kinds of ways that school can accommodate your schedule. Profs, Head of department, Advisors can all have great ideas how to help you through your school schedules. Your friends and fellow students can help as well. Anytime you think of something you will need, make a list so that when people start asking what they can do to help, you will have a list ready. I'll be thinking of you on your surgery day and sending you positive vibes.

Haha, yes, school should be the last thing on my mind right now, I think I was just angry that one of my professors said he could not make a decision regarding passing me if I miss the presentation which is on April 30th. That gives me about 2 weeks to recover... Might be pushing it but here's hoping!

Thanks again everyone for the positive thoughts and the reassurance. I am reciprocating to all of you. Will give an update when able .

Well, Katherine, I can see how frustrating it must be with the Prof's attitude towards passing you. I taught several years at the Univ of TN and one thing I used to tell all my students is that "there is always something you can do about whatever situation you are in" and I think this applies in your case. Maybe if you have the time, you could talk to your advisor or the Head of the Dept about your surgery. You might even be able to first ask your doctor to write something about whether you are able to physically do a presentation two weeks after surgery especially one that involves oral cancer so that it is medical advice from a Doctor and not just your wishes. What about getting an "Incomplete" in the class so that you can complete it whenever you are able? So as not to miss graduation, you can still receive a "fake Diploma" when everybody else is receiving theirs and then finish up whatever is required to get your degree. This is what happened at the Univ of TN whenever there was a good reason for it, and it seems to me that surgery is a very good reason. It helps if you can be sweet with whomever you talk to and try to give the impression that you need help and advice about the best way to proceed. You could also check out the main pages of OCF for info on surgery and recovery. THis might help to educate your Prof or anyone you talk to at school. I just remembered your surgery is April 7th tomorrow! So AFTER surgery and whenever you feel up to it you might just put some of your thoughts/wishes together for the people concerned at school. A laptop or iPad would be helpful to take with you to write or speak. When they see what a conscientious and responsible student you are, they can't help but try every which way to accommodate you. Hope everything goes just perfectly for you tomorrow!

Katherine,

Best wishes for a successful surgery. I certainly understand your anxiety about the surgery, but many of us on the forum have been through it already. It isn't fun especially the first few days but you will do fine. Being in pain doesn't help with recovery, so take pain meds as needed.

I hope you can work something out with your professor about your class. There should be something they can do to accommodate your situation.

Post when you can to provide an update.

Hi everyone. Just a quick update, I got home from the hospital today and am doing ok. They said they were able to get clear margins on my tongue so that's a good thing. Hopefully will get results back on my nodes this coming Tuesday.

Thanks to everyone who calmed me down about the anesthesia. It wasn't nearly as bad as I had thought it would be and my anesthesiologist saved me from having a sore throat (besides the obvious referred pain). Random side note: he was VERY attractive as were the fellows on my surgeons team. I'm pretty sure I was flirting with some of them at one point . Guess the calming drugs worked pretty quick!

Still in some pain as would be expected. I keep getting headaches from the pain meds so that's been a little tough to manage. Hopefully the time frame will go as experienced by many of you and next week will be much better. At least this part is over with.

Nice to see you have the energy to flirt! Thank goodness for calming drugs.

Thanks for updating us. I was thinking of you and am so glad it went well.

So happy to see your update, Katherine - and glad your surgery went well. A little flirting is good - it brightens the day of those around you and can help with any requests you might have of the nurses and doctors. Be sure and tell them about your headaches. Whatever symptoms you have are important for the doctors to know about. Each patient is different in their reactions to meds and sometimes something else can be substituted to help you be more comfortable. Stay close to us here and let us know how everything is progressing.

So glad you got through it okay!!! my surgeon is older, he trains ENTs from all over the world. Well - his fellow the year I was in for surgery was drop dead gorgeous... Tall blonde blue eyed Australian... When he came out to update my daughter while I was in surgery she said her brain stopped working.

Heavy sigh... He finished his training and moved back to Australia...

Feel better

Thanks everyone!

Cheryl, sigh. Too bad he didn't stick around longer. Eye candy is nice even despite the associated temporary brain impairment!

Am hoping for a speedy recovery. It's only been 5 days and I already feel annoyed that I'm not better. I guess I'm not patient enough to be a "patient" haha. Another life lesson I suppose .

Wishing you all well!

Good news today. They got clear margins all the way around and all of my lymph nodes (18 plus the salivary gland) came back clear . Tumor board decided they just want to follow me. Am feeling very thankful right now and appreciate all the support I received here.

Great news!!! Now you can recover from surgery in peace, graduate and look for that brilliant career.

Cheers
Maureen

Thats wonderful news, Katherine!!! You must be doing the happy dance

You are one very fortunate lady. Best wishes with your continued recovery from your surgery.

Hey! That is great news! So happy for you.

That's great!!

That's awesome. Do keep a close eye on your neck and mouth. Anything unusual... run - do not walk - back to see your ENT... hugs.