hi i got home from hospital yesterday and news not so good. seem it is a large tumor that he says he has now removed. but he says he could not get the clear margins so no further surgery is hightly likely. commando surgery? he is going to remove half of my jaw on the left side and replace it with bone from somewhere else. i will also be having neck dissection. hell just writing this is making me feel sick. i havent actuallly got the pathology results im sure they will be with the doctor when i see him later this week. i have so much questions and stuff. but i am just going to have a browse through here and see what i can find. this sitre is wonderful. i can not find any inforamtion on anything in tasmania to help what so ever any way im ok for now thats the main thing, and the horrible pain i was having before is now not there thank god

i am so sorry to hear this, prayers

thank you so very much xx

Hi,

Not sure what your medical options are where you are located but try very hard to get another opinion from a different specialist, and I mean NOT a surgeon. You see a surgeon and the answer is surgery. You see an oncologist and they say radiation and chemo. These are the two known proven methods of killing cancer.

Better still get your case presented before a tumor board. Many doctors with different specialties are present and weigh in their opinion. You can attend, press hard if they say sorry but no. It is your life they are making life altering recommendations - you have a RIGHT to be there if you so desire.

Good luck

Sorry to hear the results are not what you and what we all hope for for you.
Best wishes to you.

Hi there.. I think based on the type of cancer you have the surgical alternative is likely best at this point with follow up from rads and chemo. It's hell on the body but also the best chance at beating this- clear margins are always good but no guarantees. Its like this... you have a tumor with surrounding cancer involved cells. Now, if they go in and remove the tumor and surrounding tissue and follow up with rads, then there is less of a chance of one or two cells remaining than if they just hit it with rads. On a scan the tumor may be gone, but on a cellular level there may be one or two hangers on. Another reason for them to grab your nodes too.

Usually the bone they take from elsewhere is a leg bone. A few here have had a similar surgery and are doing VERY WELL. They can likely give you the nitty gritty details. (though from what I gather bone has less chance of being rejected because it's yours.)

Since he is messing with your face I would hope a plastics guy is involved. The ENT removes the bad stuff and the plastics guy puts you back together...DELICATELY..

I know people shake their head and say well how you look is unimportant as long as you beat this. This is true to a degree, however normalcy is also very important to healing and fighting off depression.

I sincerely hope all goes well and that you are being treated at a top cancer center. Hugs and best wishes.

thanks all. yes i am waiting on plastic surgeon to get in touch, i am so angry in hospital the doctor said 1 or 2 weeks wont make any difference and i am into my 3rd week from the surgery. i have heard nothing. i rang the doctor on Thursday and he had only just sent my info (by snail mail) on Wednesday. the longer i am waiting the harder it is getting. i can feel my self getting down and i want to be as positive as i can. i just hate the thought of the cells that may be left sitting in there growing. bloody doctors. i wish i could get in and see some one else but unfortunately we don't have any more to choose from where i am

also another question, the last week when i eat anything i have insatnt swelling in the side of my neck that just comes up in seconds and quiet large. it is kinda under my jaw. it only last for about half hour and it goes. but it is quite
painful and that is turning me off eating

well since this post i have been back in hopsital. my April surgery didnt get clear margins so i was referred on to our biggest hospital in Hobart. i had a great team of doctors, plastics, max fax and. I had my surgery on june 2nd, 15 hrs later i was in ICU. they had remove a bit more of my tongue, remove the floor of my mouth (left side) put in a free flap from my arm, they had to remove part of my jaw to get the clear margins. and a bilateral neck dissection. the were only going to do my left side of neck but due to the swelling when eating going to my right side and then staying swollen they did a biopsy on the friday before my operation, and this of course came back a cancer cells. i also had a tracheotomy (this was the worst thing ever) and i was feed through nasal tube. spent 10days in the hospital before finally coming home. every thing healed very well and they were very very happy with it all. 6 weeks later today, i am now preparing for chemo/radiation therapy which will start next monday the 21st July. hopefully this will kill off anything that might be floating around. its a long road but i hope its going to have the best results.

Sorry to hear that its back, you're in my thoughts.