I had surgery on 1/27/10 to remove the cancer back to clean margins. I have to say I have had several surgeries over the years and this hurts more than all the others combined. When they said I would be in the hospital for 2-4 days for Pain Management I thought they were nuts. Well here I am over a week later with Fentanyl 25mg Patch, Motrin 800 mg 3's a day and loratab for break through pain. I don't remember much of the first few days. Had to go back Yesterday becuase the initial pain meds were not working. I am totally amazed as I have never even taken more than a couple of pain pills with previous surgeries.
They informed me yesterday that the diagnoises has been changed to High Grade from Intermediate Grade. with Perineural and Skeletal Muscle invsaion. Doctor indicated he was taking my case "to the group" for confimation as to how to proceed
that being rediation.
The graft did not take and is rather gross as it comes loose. I am lucky that I do not look much different just a swollen bottom lip. I am thankful for that. I find eating or talking cause alot of pain. So keeping conversations as short as possible. Have to eat but staying with liquids. I have not lost a darn pound to add insult to injury.
Can anyone explain the "invasion" aspect and how long before the pain begins to lessen? I feel like a baby compared to what many of you have endured. I am missing a 1" area from middle of lip to just before the turn up to teeth.
Two questions how long does it take before the pain begins to lessen and what does the Invasion aspect of the diagnois mean?

Seda,

With the revised diagnosis did you say they got clear margins or are they saying they may have to go back in?

If you are going to get the rad, don't worry about loosing any weight now. In fact you really need to ramp up your eating as soon as you are able to before the rad starts.

Per the path report:
Excision, MEC High Grade, 3.0 Millimeters in greatest dimension
with Perineural and Skeletal Muscle Invasion. The surgical Margins of Excision are free of Malignancy in the planes of sections examined.

I am not sure about your pathology but 25 mcg of Fentanyl is the minimum dose. It can go as high as 500 mcg, but typically not for OC patients. You may be better of with Morphine Sulphate for breakthrough pain as it is the fastest acting. Motrin is a medium strength pain killer. People here have had their Fentanyl dose rates, typically worked up (it can only be safely increased in 25 mcg increments) from 75 to 150 mcg.

I think your pain management team is short changing you. It is a basic patient right to have adequate pain management 3-4 max pain range, in other words, bearable. Use the number system to describe your pain - 10 being unbearable.

i agree with gary on the pain meds. dont let ur team short change u. they have to start u out at 25 but if after 24 hours, it is not managing ur pain, let them know. (it takes approx. 24 hours to kick in).

and with the lbs---that is the least of ur worries, andy gained 10 lbs during chemo and is now down 60lbs thru radiation.

24 hours is not entirely accurate. It takes a Fentanyl patch (especially the first one) 24 hours to even start to reach it's pain management therapeutic level. Even so, they will also add breakthrough meds to the mix. If you are hitting the limits or exceeding the prescribed dosage for breakthrough meds ("short term") the docors will use a "titration formula" to recalculate your "long term" pain management meds (the Fentanyl). NEVER exceed your prescribed dosage without specific orders from your doctor. Be sure that you read carefully and unstand ALL of the warnings, precautions and insructions for use for Fentanyl. It can be very dangerous if not applied PRECISELY as directed. It is 100X more powerful then heroin. A cut or torn torn patch can release enough medication to cause a fatal overdose.

Well I am back at work and trying to get my head around the emails and back log. I just got a call from the Doctors office telling me I have 3 appointments on 2/17/10 with a Dental Oncologist a radiation Oncoligist and a Panerex or some other type of xray. They finally explained that the problem with Perineural invsasion is that while they may have gotten clean margins the cancer Jumps, for lack of a better word, along the nerves and it would be possible to have jumpled beyond the margin. So much for thinking this was behind me.

I like you Seda have had many surgeries and quite a few major ones including Esophagus where they wrapped 1/3 of mt stomache around my esophagus, 2 abdominal arotic aneurysm surgeries 5 shoulder surgeries both elbows , kidney stones removed 12 times. The worse is this one from OC 2 1/2 years ago, I never needed pain pills much for the otherss, but I sure take them for this. Not like I should but more than I want to. Most of it is caused from the Rad seed implants.

heres to hoping this IS behind u. let us know how the appt. goes.