So just got home minutes ago and before shutting down the computer to drink a bottle of wine with my wife
(the ENT surgeon suggested it as at this point it cannot hurt
Here are her Bolded answers to the questions I posted earlier.
1. With a new lump now on the lower side of the tongue where we could actually feel it with my finger clinically cancer - is partial glossectomy my best bet at "beating it"?
YES - AND SHE SPOKE WITH THE RO WHO AGREES
2. Would some CO2 laser surgery on tongue be better than scalpel? NO
3. What percentage of tongue are you planning on removing (1/8;1/4;1/2)? ONE HALF
4. How urgent is this surgery? Can it be delayed for expert flap surgeon? SHOULD BE DONE W/I 3 WEEKS - EXPERT LINED UP
5. How many glossectomies have you done?
OVER A HUNDRED - NOW REDUCED TO ONE A MONTH
6. How many flap reconstructions have you or a co surgeon done? HE DOES 2 TO 3 A WEEK
7. What are the odds on �Tin Man Syndrome�? (multiple serial glossectomies as some OCF posters had) NO CLUE JUST HOPE
8. What assistance can your office provide in getting second opinion CAN'T EXPEDITE JOHN HOPKINS BUT WILL SEND TO WHOEVER
9. What�s the SWAG risk benefit: how long would I have if I do nothing? Do I only get an extra 5 weeks?
IF NOTHING, DEAD W/I THE YEAR AND VERY PAINFULLY WITH INABILITY TO EAT, TALK PLUS PROFUSIVE BLEEDING FROM THE MOUTH WITH SURGERY - GOOD CHANCE OF EXTRA ONE TO FOUR YEARS
10. Can you do a �selective� Neck Dissection that operates on fewer areas, preserving function in the shoulder, and can sometimes leave the sensory nerves, preventing numbness, especially in the earlobe. GIVEN LOCATION OF TUMOR PROBABLY NOT - EXPECT PERMANENT DAMAGE FROM SPLITTING JAW BONE IN HALF PLUS TUMORS INTERTWINED WITH SENSORY NERVES
11. Can you do a neck dissection that still removes tissue from all five levels, BUT sparing the sternocleidomastoid muscle, the spinal accessory nerve and the internal jugular vein ? PROBABLY YES
12. Should I be changing RO and MO since prescribed TX didn�t do the trick? THEY BOTH RECOMMEND THIS SURGERY AND WANT TO TELL ME SO IN PERSON IF I WANT TO SEE OR HEAR THEM EVER AGAIN - THEY FEEL VERY BADLY ABOUT THIS OUTCOME-
13. How long in hospital? 7 TO 10 DAYS
14. How long recuperation? 6 MONTHS TO A YEAR
15. Ability to Speak? YES BUT WITH A LISP AND NOT FOR 2 MONTHS
16. Ability to swallow? NOT SO MUCH - HOPE FOR THE BEST
Then she added in full detail the really nasty side effects
Hi Charm,
I'm happy your ENT answered your questions, that is very helpful. How are you feeling about everthing? I know I am feeling a bit nervous right now. Thank you for posting your questions and answers, I find it helpful and I'm sure others will to. I've been thinking about you, thanks for the update.
Suzanne
Glad you got some answers. As far as the split mandible for surgery - it was presented to me as a possibility but since I was having a bilateral neck dissection, there was the possibility that they would be able to do the tongue resection and reconstruction through my neck, and that's what happened. So, depending on where your tumor is and if you're having the neck dissection, I would ask your ENT if that's a possibility - one less thing to heal from.
Im so sorry about your latest struggles with the recurrance. Your questions were excellent and well thoughtout. Your ENT seems to be on the ball and very honest which is admirable. Wishing you the best possible outcome to this.
Charm,
I'm devastated about the news and I will keep you in my prayers.
Hi, Charm,
I am so sorry about the news regarding your recurrence. Your questions were excellent and I'm glad you got direct and specific answers although I imagine the information is difficult to take in. My thoughts are with you and wife.
Sophie H.
Charm
The surgery that you have outlined sounds very similar to the surgery that I had in April 2007, including the jaw split and bilateral neck dissection, nerve and vein in neck.
Did you doctors give you any details about a tracheotomy?
If you have any questions that you think I might be able to assist with based on my experience please do not hesitate to ask of alternatively send me a PM
Karen
Charm
Your questions were very well thought out and I only wish that I had your presence of mind when I was preparing for my surgery. This sounds very similar also to my recent surgery also. I did have more of my tongue removed though. Feel free to pick what is left of my brain anytime.
In my experience the doctors have never been very positive when answering my questions and the outcome has been better than what their answers indicated. I think that this is part of their education so that you don't get disappointed and are pleased with the outcome. For example, my doctor told me that they did not expect me to be able to talk or swallow after surgery. I was talking up a storm once I woke up - granted some of it was not intelligible, but that has improved greatly. And I can swallow - just tonight I ate my first whole container of yogurt and I will have lasagna someday.
My thoughts are with you and your family. Try not to let the negative thoughts get in and think positive.
Patty
Charm,
I personally appreciate a doctor who answers my questions honestly, even when I don't like the answer. I wish you the best and will keep you in my prayers.
You got a lot of good answers -- I would personally be inclined to hang the side effects and go for as much as possible -- That may happen anyway once they open you up and see what is there.
BTW, all, be careful about "how much tongue" questions and answers because the tongue has so many parts -- One person may have the mobile (in the mouth, up front) part of the tongue in mind and the other may be thinking of the entire tongue including the large BOT vertical muscle portion in the throat. When a doc says "half", he/she might be referring to the entire tongue or just the mobile portion.
I'd be quite surprised if there isn't going to be a trach involved in all this because of all the trauma and swelling.
Suzanne
Thank you for sharing what you're going through - in comparison I am whining. Check out some other posts I did yesterday on song lyrics for my feelings. Now to start working on incorporating PeteD's can do attitude.
Sobradley
Thank you. We did digress from our Q & A format as I pushed back hard on alternative access. Just bad luck that the tumor is placed where there simply is no other access except split mandible that leaves them enough room to operate and totally excise it. No one could ever feel it or palpitate it even with the CT and MRI showing right where it was - just buried too deep in the back of tongue.
Christine
Thanks for the reply. I will probably check in later to get opinins on PEG control as now it seems a certainty that I have to get one. ENT said the swelling would make it impossible to swallow at first unlike the radiation and chemo which just made it painful and slow.
Ray
You're the MAN. thank you. You who have gone before me are my role models.
Sophie
Yes my wife is very upset - hard for her to hold back tears yesterday. I swear at one point all three of us (me, wife, ENT) were just quiet with red eyes after discussing this. [My ENT's husband had oral cancer of the tonsil 12 years ago and is a survivor but has dental and other issues]
Karen
I will take you up on that kind offer once I meet with the oral surgeon who will do the flap surgery and know more details. The only mention of a trach was that there would be a temporary one in the hospital for a week.
Thank you
Patty
JUST WHAT I NEEDED TO HEAR. Yeah, I know all caps is shouting but I did feel like shouting YES. I'm not so sure on talking after surgery as she did say I would wake up with a temp trach tube in place. Did you need swallowing therapy? My ENT did mention that.
Susan
You and me both. Keep those prayers coming please
Pete D
Reading your posts and the laundry list of surgery you endured does give me hope. Yes, you are exactly right about percentage of tongue. ENT stressed that she is taking out the back bottom of the tongue and lower left side while hoping to leave as much as the front as she can. And yes I did change my position and say once in take as much as you need to get really clear margins.
Unlike yourself, I intend to take a break from posting during surgery and hospital stay - since no laptop and no more blackberry, but otherwise I hope to emulate your "ironman" style (the tinman syndrome ? was just homage to my all time favorite book Wizard of Oz where the woodman is slowly cut off piece by piece until becoming the tin man )
Charm,
I would not want to be facing what you are but I have read many posts since I've been on this sire from people that have gone through what your are facing and it is very doable. Please try and remain as positive as you can and I bet you'll come out surprisingly OK.
David
Thanks. You have spelled out the plan. I just did not expect so much graphic detail about splitting the jaw open, swinging it out and the attendant nerve and tissue damage. Plus what hurts worse is that soon I will no longer be part of the "Final Five" cylons (since we can count on one hand OCF posters who had radiation chemo with no PEG) as with a temp trach tube, I will need a PEG even after discharge from the hospital. Just spending 10 days in there sounds so daunting. Never thought that my aches and pains and problems right now would be transformed into aspriration goals for recovery. I do intend to get my two biopsies sampled for HPV and will be starting a separate thread on that seeking info on getting these to Gillian at John Hopkins as I am now inclined to think mine is NOT HPV. If so, it would butress the research on HPV being more susceptible to rad and chemo than "other".
I read your post about your ENT'S answers and I must say the answer to one of the questions set me back on my heels! What does she mean another 1-4 years? Did you check the bottom of your foot to see if there is a "best Before" date that you weren't aware of?
My surgeon didn't give any such time lines at my last surgery (Oct 23, 2007) and I guess I didn't ask. So many times I think I have achieved a measure of peace with my own mortality - something those on this site need to do - and then something like your ENT's answer sets me back and kinda annoys me. God will decide when and how.
Know I am praying for you. Sounds like a brutal surgery but I know you have the ability to look past this surgery as a detail requirement necessary to move on with the rest of your life.
Hugs
Donna
Donna
My ENT very emphatically did NOT want to give me any numbers or years. You have to blame me. I have over three decades of cross examination skills and my line of questioning was very indirect and in combination with my gambit question of "what if I don't do anything?" Her response which I did not include was "You would be a very foolish person since this is treatable and I have done the exact same surgery and worse on people who have survived." which opened up a line for "how many: 100- 200, etc until I boxed out an answer. While I am not Muslim, I always thought there was a very Christian concept expressed in the all purpose answer to questions like
Will the bus come at 4?: "GOD WILLING" they'd reply.
Just know that based solely on who she has operated on, no one has died before a year and while others with less invasive surgery are going on ten or twelve years, just so happens that similar ones to me have all been within the last 5 years. So definitely NOT PROOF just happenstance but Inquiring Minds want to know.
I could be wrong on this, but it's my understanding that the 'survival' threshold is actually based on five years without cancer. No guarantees about any of this, it's all based on statistics, but no one knows what factors are really important when selecting a representative population.
That's part of the reason for my look forward, not back, attitude (Anyone read about the fictional Joe Pike? A can-do guy with a red arrow pointing forward tattooed on each bicep -- I occasionally consider having them done myself!).
My late brother-in-law was a radiologist (Who died of side effects from treatment for Hodgkins Lymphoma -- His big regret was that he got it early enough that the current cures weren't available but he could see them coming -- Had he had the same thing ten years later, he'd likely be alive today) and we were discussing my mother's inoperable lung cancer -- Her Docs gave her only a month or so to live, but she lasted 1 1/2 years -- It's all really sophisticated guesswork when you get down to the bottom of it.
Charm, I don't know if you got this far back in your readings, but here's the link to my first free-flap experience, which sounds a lot like what you will be going through (except no bone-splitting was involved in my case).
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=75331&page=allDon't forget to ask for ear plugs in the ICU to get some rest!
The PEG is really only optional for the chemo-radiation treatment -- Being a fundamentally lazy guy, I might hang on to mine for a while, at least until my food tastes come back because eating without the enjoyment is actually a bit of a chore -- Keeping up with my swallowing, of course -- Actually, growing difficulty and pain in swallowing was really what led me to discover this most recent cancer lurking away in the background.
[quote=Charm2017] JUST WHAT I NEEDED TO HEAR. [/quote]
Charm
I hope that is a good shout.
Yes I have speech/swallow therapy together. It is going pretty well. It can be frustrating when it doesn't go as quickly as I would like. I really like that we try foods in our sessions and I am not afraid because someone is there with me. Sometimes trying foods at home by myself is a little unnerving. You will have the benefit of not dealing with the radiation side effects in the middle of your therapy also. I had to stop for a couple of weeks during rad and now the slime is sometimes a detriment. Last night I ate an entire container of yogurt with a couple of pieces of strawberry in it and I am now eating some cream soups. Spinach lasagna and mac n cheese are my short term goals.
I had the temp trach also, but I woke up babbling. My sister and my ENT have been able to understand me since day one. Now that my flap is starting to settle in, my speech is improving also.
It will be OK. You can pick my brain all you want - here or in PM.
Keep your spirits up.
Patty
Pete
Thanks, I just read your link to your surgery. It was not on my list of questions, but my ENT said to count on a tracheotomy. All my surgery will be in the very back and bottom and not the front. Plus with splitting the jaw right in the middle and spreading it out (I think I saw that in SAW II or III or IV or V) in her experience causes so much swelling that I will need the PEG. Never even thought to ask but she was quite thorough. Excited that I just got the appointment with the oral surgeon/flap reconstruction guy for next week who is �triple� board certified and �Fellowship Trained� [Otolaryngology, Plastic Surgery and Dentistry] according to his web site but I trust my ENT's telling me he's the one I want
Thanks, I saved your descriptions to share with my wife to get her ready.
Post-op the hardest thing to deal with is the trach -- Since I live alone, they didn't want to send me home having to deal with the trach, tube feeding, cleaning the incisions, etc., yet they they didn't want to keep me in the hospital -- Hard to find a skilled nursing facility (aka SNF or 'sniff' in the trade) with a respiratory technician, esp for only a couple of weeks on short notice -- Compromise was my sister came out to stay for a week (would have stayed longer but she had a prior commitment of importance) and the hospital trained her (and me) in the full care of trach -- We also set up for a visiting nurse paid by Medicare.
In reality, I did all the care myself, as I knew I would -- I had done so for a short period of time following my first flap, so I knew I could do it again, even though it was more intense this time because it was a total glossectomy, not just a partial like last time, with throat-cutting on side as well as in front.
From my experiences over the years, I know I recuperate much better at home on my own schedule than in hospital.
It helps that I have a food pump that I bought on EBay last time so I could set it up to pump very slowly because I was having problems taking the food in as fast as I had during- and post-radiation -- BTW, I used Nutren 2.0 (500 cal/can, by Carnation) to pack more calories in fewer cans -- I now dump two cans in the bag and take a nap while I "eat" -- The Nutren is drinkable with the addition of NesQuik chocolate drink -- Sadly, VHC is not considered a tube nutrition so isn't covered by the insurance.
Medicare also paid for the machinery to support the trach -- The mister that puts moist air in front of it to keep the secretions loose (and froze me in the process; I am particularly chilly following this surgery -- Last one was in Summer and more tolerable) -- And the suction machine (portable if need be) plus the supplies for each and for cleaning the trach including the saline 'fish' -- Trach users know what that is; they have respiratory techs creeping around the hospital at night to squirt you with fish to get you to cough up the gunk -- The suction machine is very useful but one has to take care not to damage the new flap -- Wish I'd had one post-radiation for all that thick gunk!
BTW, when you can wear stuf around your neck (prohibited at first in hospital with all the throat-cutting), be sure to get the trach straps with the Velcro fasteners rather than the ones with the cotton ties.
Dr Haakenslash, the department chair at UW Med Center who did my flaps along with the Cutthroats, is ENT and Oral Surgeon.
Dr Gillison is no longer with Johns Hopkins. I can't remember where Brian said she was moving to but she is continuing to do HPV research.
She's moved to Ohio State.
I like the Tin Man Syndrome, although in our cases, the replacement parts are just being recycled from other areas of our bodies. I am looking forward to the day when they can grow new body parts from the old ones, so I can have a tongue that moves and has lots of nice working taste buds.
BTW, with my first flap surgery, all my clothes worn to the hospital still fit to wear home, however, the fluid buildup in my leg and feet and waist, etc., from the second surgery meant that my jeans were suddenly too small -- Something to consider depending on where the harvest area will be.
Me too Pete. I was wondering the other day why someone has not came up with that yet. It is difficult to explain to people that I can not eat a lot of things due to the flap. It's not their fault, but as soon as I mentioned taking some foods by mouth they all think that I can have a whopper or something I guess. At a church dinner last night they had a buffet, but I had cream of celery soup. It was very uncomfortable for me to have people almost try to force different foods on me when I can not eat. It was also hard because people want to talk to you and expect answers while you are eating and I have not reached the point where I can do that. If I open my mouth while eating, I wear my food. I don't think I will attend another dinner for awhile.
Patty
I just smile, make a wait a minute gesture and keep on moving the food to the back -- I found I was essentially putting more food in to help push the previous food to the back for swallowing and even if I stopped putting food in, it took a while to clear the pipeline -- Besides, it's not polite to talk with your mouth full!
Personally, I don't let other people's manners and habits dictate what I do -- Just because they don't understand doesn't mean it's time for me to be embarrassed and leave or stay home -- I have enough problems of my own without being responsible for those of others -- I'll let their mothers deal with that and merely offer silent forgiveness
Depending on who it is, if it is a small party of friends, I will explain up front that I can either talk or eat, but not do both -- Or I might, when my mouth is finally empty, say that it takes that long for me to deal with a mouthful of food and they will have to be patient and understanding with me (the latter puts the ball back in their court, manners-wise).
With friends, I had learned to kind of push the food to one side and talk around it, but that only works for solid food, not soups and stuf like that.
That's all based on my first flap -- Now that the second one has partially failed, across the front and down one side, I don't know how it will all eventually work because now I have less tongue and mobility than before plus I have this rather large empty space that food will fall into and be difficult to move to to my swallower -- I see a lot of table liquid in my future!
Or maybe I can just stash the food in the empty space to talk around it...
Hey,
I had jaw removal and trach and disection. I can answer questions
and I think most people do much better than I did. But, I am doing
better than anyone expected. I think I have a lisp, but my speech therapist cannot hear it? She says there is a name for it. When I leave myself a message on the answering machine, I don't hear the lisp either! The trach was the worst for me because it kept cloggin g up and I was too out of it on drugs to know what was going on at the time. But I am good now!! Alive and well after 2 years. I just must take it a day at a time. I just graduated from and exam every 2 months to every 3 months.
Please pm me if you wish.
Take care!
Debbie
It is so helpful to me to hear from people like you Debbie and Pete that have similar situations to mine. Pete I think you may have missed your calling as a therapist or some similar profession because your statements cause me to stop and think whether what I am worried about is really my problem or not. Thank you.
Patty
Eating in public isnt an easy thing after OC. It is an acquired skill that we learn thru trial and error. I will go to restaurants and just hope I have a nice waitress who is willing to work with me. My next hope is that there will be something on the menu that I am able to eat. Ususally most waitresses are happy to accomodate my unusual requests. I just explain that I have alot of eating problems so eat a little differently. Talking and eating arent something I can do either, I must concentrate on eating or will choke.
As far as talking goes, I think we hear our misprounced words more easily than someone else would. Sometimes my speech isnt perfect but others dont seem to notice. My job is doing customer service over the phone, so my speech is very important.
We are all our own worst enemies when it comes to the perception of ourselves. After battling oral cancer, having a few leftover annoyances should be easy to overcome.
Charm, if you need any pointers about using the PEG, let me know. I had a hard time adjusting to mine, so Im full of tricks to make it work. Ask for the feeding machine so you can do overnight feedings, its so much easier. You can get alot of yoru nutrition in while you sleep and not have to push so much during the day to get the proper nutrition. When do you get the PEG?
Well I was hoping that the PEG would be on the first of Never. Seriously, don't know and will have to ask but since nothing scheduled except mtg oral surgeon thursday the 12th, and RO on the 19th and surgery the 26th - assume it will be once I am in the hospital. Funny my "cancer dentist" called today and recounted patients he sees who have had similar surgery and are doing well in both speech and eating. Good to hear of success stories.
This time around I am not having much trouble taking the food at a higher rate -- However, when I first set up with the company providing the food and accessories, the dietitian made it clear that medicare would have to have a reason for the pump in order to provide and supply one (I already have my own because I bought it on EBay, but the bags with tubes [aka pump sets] are supposed to be changed daily (although in a pinch I would recycle them by rinsing well with a saline solution as soon as I was done feeding) so I said that I had been having problems that were only fixed by a steady slow feed which I couldn't accomplish with a 60cc syringe and needed the sets for the pump (The sets can also be used for gravity feed because they have the little roller clamp adjustment gizmo on them) -- I don't know what they cost, but I doubt they are giving them away.
Since the pump is a Kangaroo brand, the sets could also be called 'Roo Pouches!
I did find, during my post-radiation recovery, that one reason for my anorexia and weight loss was that I was avoiding and short-cutting the food intake because it was such a fuss -- I was putting the 60cc syringe on the PEG and then pouring the food (I was using both the Safeway and WalMart versions of Ensure as my food -- I was paying for it myself) -- If my concentration slipped, so would the syringe and then there'd be a small mess to clean up.
Note: Cleanup of the food should NOT be put off, esp on fabric or carpet -- Best thing seems to be a thick paste of powdered laundry detergent with enzymes and water to actually eat the food.
Also, I was getting bored -- At the urging of a friend, I had moved out of my small RV trailer (didn't have a full toilet, just a porta-pottie which I would have to drag to a marina for emptying) into a small rental house -- It had basic cable TV, so I would stand or sit and watch while gravity did its thing.
It wasn't until near the end of my stay there that I realized I could adjust the PEG for better flow by both turning it and also by pushing it in more -- Prior to that, I had just been alternating sitting and standing, where sitting actually flowed better.
After my first free flap (BTW, friend and I were looking at the shark-bite site on my wrist and he remarked, not having seen it in a while, that it was really blending in with the rest of my arm and not as noticeable as it had been; I wasn't noticing it because I saw it everyday, so it always seemed the same), the feeding was not going well in part because the second PEG was so much smaller that I couldn't get free or gravity flow and had to actually pump the food with the plunger, which was getting hard to do as the plunger would gradually start to bind up and my relatively new shark-bite wasn't helping any. That's when I decided to get the pump.
I kept the second PEG after I removed it for the final time (no balloon, it just slid out) and after I got my gastro-Doc to install PEG number three (He said he has had to replace quite a few of the smaller kind installed at UW), I pulled some of the port 'hardware' (silicone and plastic) off the tube and, as I suspected, I was able to push the smaller one inside the larger one (I.D. on large slightly greater than O.D. on small)!!
Quite a difference when it comes to flow and no contest when it comes to washing crushed pills down inside -- The small PEG would clog INSIDE me at the exit ports, whereas the smallest points on the large one were on the outside and easily removed for cleaning if needed (which so far it hasn't been!) -- To make things worse, the small PEG has a small cord running down the inside, for some kind of adjustment, which cut the usable capacity even more. Wish I'd saved the first PEG so I could post comparative photos of each! I will do that when I remove my current trusty one!
The only saving grace about the small one is the ease of installation by the radiology dept doc -- I was in hospital when they decided to install one (I was getting food by naso-gastric tube, the one that goes in through the nose and down the back of the throat and fluids via IV) -- I walked down with aide down to rad dept where they put me on a contrast or reflective slab of some kind, gave me a local and proceeded with the installation using perhaps a fluoroscope to view the process (I could see part of the screen as he worked).
By comparison, the gastro-Doc had to give me one of the 'roofie' drugs and then shove an endoscope down my throat to mark and observe the placement. When the time comes to remove it, he will just give it a good yank and out it will come (Am seriously considering doing that myself when the time comes -- We will see). Having the PEG installed before the surgery meant that they didn't have to mess around with the NG tube (I REALLY didn't like my first one of those because the Doc secured it with a couple of stitches through my septum, so anytime anyone touched it, pain followed).