Good Afternoon from England. I have just been diagnosed with squamous cell carcinoma on my left cheek. What started as a simple mouth ulcer which I left for 3 months has now rollercoasted in something much worse. I had my biopsy on 27th December saw the consultant 8th January had MRI, CAT scan and dental x-ray 9th Jan and now a follow up consultation to discuss treatment. The good news is it hasn't spread. Now I have to have an operation to remove the cancer in my cheek, 3 wisdom teeth, 2 other teeth, a skin graft from my left arm (inc artery) into my mouth and another skin graft from my stomach to my left arm. They are going to do this all at once on 14th February - Happy Valentines Day. The surgery is going to last 7-8 hours, but I will be kept under for 24 hours. Really do not know what to expect when I come round - has anyone else experienced this and how did they cope? After surgery it also looks like I will need radiotherapy for 4-6 weeks. It all seems so unbelievable for an ulcer that is the size of a thumb nail!

Unfortunately or fortunately you will have plenty of posters with expert advice as they have been thru what you are about to embrace. I didn't have any surgery but from reading thousands of others posts all I can tell you is it sounds a lot worse than it turns out to be so try and calm down some. Experienced posters are on their way.

Welcome to OCF! My original tumor was similar to what you have described. It was on the inside of my left cheek. The surgery sounds difficult but it will be relatively easy. Have you asked why they are planning on keeping you under for 24 hours?

My advice is to eat like crazy now. Eat all your favorites and dont worry about gaining a few pounds, in fact that would be very good if you are slim. Your sense of eating and swallowing will change and it will become difficult for a while while doing radiation. So get all your favorites and have them now. Its only temporary but it is horrible to crave something for weeks.

Stick around here and we will help you with support and info to get you thru everything you are facing.

Hi
I'm from England too........I had a slightly different op from you I had the upper mouth cavity removed. It was a long op like yours but I didn't have any skin graphed just a prosthesis. David is right it's much worse in your head than it will be you will get through it and be fine! And yes eat plenty the radiotherapy is harder than the actual surgery...looking back the surgery was the easy part recovering takes a while longer. I had my op 18 months ago and it really wasn't so bad you will be fine.
Take care
Jayne x

Hi there and welcome!!! (it goes without saying that I really wish you didn't have to be here) There are quite a few here who've had a similar surgery. Mine was a tumor in my tongue... but the surgery was very similar. They rebuilt part of my tongue with tissue from my wrist and replaced it with a thin piece of skin from my thigh. My surgery lasted 14 hrs. (it sounds horrible but honestly it wasn't painful post op - mostly uncomfortable and I looked horrendous! They cut the nerves in my neck during my neck dissection and as a result I was pretty much numb in the operative area...)
I would make sure you get the best treatment by someone who is an expert in the field of oral cancer - my first ENT missed it entirely, the second while he diagnosed it correctly was a bit of a butcher. When I found out it was cancer I sought out the top dr. at the top cancer center... here in Toronto that's Princess Margaret Hospital. There are a few different causes of OC. HPV+ cancers tend to respond well to radiation and chemo and generally don't need a lot or any surgery (some people with tonsillar cancer do have it removed prior to chemo and rads) generally the type of cancer you describe - cheek, gum, tongue is not HPV +. For this type of cancer, usually the first line of defense is surgery then a possible follow up with chemo and rads. (this is usually dependent on the dr. and what he recommends) it does happen a little more than not that a dr. will turn around and say.... that's it I got it all - go home - only to have the patient suffer a recurrence shortly after - often in the nodes, gums, jaw, etc.

I am not saying this to scare you. A cancer diagnosis is enough to do that all by itself, I know. I'm just saying it as a warning for you to get to know your mouth, and your neck now, and post op that way if anything pops up you know it right away and don't leave it too long.

Are you having a neck dissection? It is said on this forum that sometimes it's not recommended. But I think that applies more to HPV + cancers. Where this type of cancer is concerned it's often par for the course. This is because it tends to jump from your mouth into your nodes next. Mind you a lot of this is related to the aggressiveness of the cancer, and the staging etc.

My dr. said from the outset that he was removing 40 of my lymph nodes. I didn't argue.. Between my DX and my surgery (less than six weeks) I had a node pop up. It didn't show on any scans but post op it tested positive for SCC and had broken through the capsule of the node into the surrounding tissue. I was completely grateful for his having decided to remove the nodes from the beginning. Regardless, of the fact he believed he got it all, he still send me for rads and chemo. In other words he threw the book at it and I'm glad he did.

Bottom line this cancer can be very aggressive. Do what you can now. Educate yourself so you know what to expect, what questions to ask, and what is specific about your cancer... (size, staging, aggressiveness (differentiation)) and exactly what they are doing to you surgically.

Most importantly... try not to freak. It is scary as heck, but there are a lot of survivors here who've been through it all. hugs and take care.

Thank you all for replying so quickly, funny enough it doesnt seem nearly so bad if you know you are not alone. I am having a neck disection, so I guess this adds to the surgery time from the letter I have received the diagnosis is T1 NO Mx SCC left buccal mucosa. I will be in Luton and Dunstable hospital for approx 2 weeks for my surgery. I suppose I was naive to think as it was a small cancer it would not involve too much surgery or need radiotherapy to clear it.

It can be small and try not to worry ahead. Know there is a possibility of _______ happening, and plan for it, but then leave it until you know for certain. I was told 10-14 days. I got out at day 10 for good behavior. ;o) It can be a small cancer and quickly treated and if lucky, you can walk away and go on to never look back (except for check ups etc) but it should never be treated as such. Give it the importance a life threatening disease deserves, and if you are blessed and the surgery gets it all and there is no need for further treatment (there are a few here in that position) then that's fantastic. ;o) take care.

Mandy, my second round of cancer was a small Stage I tumor in my cheek. I had it surgically removed. It was much less involved than what you are facing. This surgery was only a few hours and I was sent home that same day. I hope your surgery will go smoothly and you will be home resting comfortably within a few days.

Not to hijack Christine but what did it feel like from the inside? Ok maybe a little obvious intent to hijack a little. :P

Ed

Mandy, welcome and sorry you have to be here - but this is the best place on the 'net for information and support. Many have been through exactly what you're facing and come through it very well.

Do you have a good support system - family and friends? That will be important to getting you through it, along of course with a top notch medical team.

Please keep us informed at every step along the way. Ask any questions, no matter how trivial they might seem. You're part of our family now.

Hi Mandy,

Welcome to the club. I can't offer anything specific as I still have training wings on too and new to this wonderful group. I can say that there are quality folks here with solid experience and knowledge.

Wish you well and take care,
Don

Spoke to my head and neck nurse today and she was very positive about my treatment so I am a little less scared. I understand that it is not going to be a walk in the park but hopefully in early summer I will be CURED and feeling much better. I do feel very lucky, my work is being very supportive, they are taking my out for a curry before my taste buds go and I am entitled to 28 weeks full pay sick leave and then 26 weeks 1/2 pay. I also have a supportive husband, 3 children and 2 foster children and a group of friends who I know will do their best to make sure that I get through this. I am very impressed with the NHS - I had my biopsy on the 27th December and am due to have my operation on 14th February. Will keep you all informed on my progress and thank you all for the kind words of support. Mandy

Supportive care is just as important as treatment is. With that, and cooperation from your employer, thee are two less worries for you. God luck.

Mandy, Look thru the OCF archives and look for a member "Cokey" from England, she lost her husband Rob to this diease and could help you right there in England. Semper-Fi Bob

Hello, Mandy and welcome! I'm sure you're a bit overwhelmed with all that is going (and about to go) on, but hang in there and post as often as you like about any of your concerns or problems as they present themselves. You'll find much good usable information and many fine folks here and I truly hope all goes well with your surgery and afterwards.
I was diagnosed on Valentines' day years ago and I wish I'd had my first surgery then also, as it could've gotten all of it at one time and I'd've (?) been done with the whole...roller coaster is as good a term as any. As it is, life goes on-am constantly amazed by the strength and fortitude that I never knew were hiding in the gray matter. You'll find yours, too. Really. We're here for you, praying for you, rooting for you, knowing that you'll make it-'coz you're TOUGH! Let us know.
Gordon