I know my story is so familar to so many of you here but unfortunantly I am an oral cancer virgin...My 39yr old husband had been initially diagnosed with stage 4 oral squamous cell cancer...orginally belived on exploratory surgery to be approx, 3 to 4 cm long was on result of ct, mri and salvage operation to be approx 14 cms. During operation, lymph nodes, right tonsil, lower right jaw, surrounding tissues and teeth on upper jaw, including lower portion of top jaw removed. A free flap taken from under his arm was created. After a few setbacks, namly a small fisutla and an etopic salivary gland, resulting in extended nasophyarnx feeding all okay. Pathology has shown positive margins and husband now set to start combined treatment of radio/chemo therapy over next 6 1/2 weeks. I know this sounds terribly naive but can someone please explain this all to me simply. How ill is my husband. Pre operation he had limited oral opening, was slightly malnuourished as a result and now still is in facial pain and discomfort. Without treatment he had a prognosis of 12 months but no one wants to commit to a time frame now...help, I would rather know what I'm up against than live in this limbo!

Jac,
Sounds like they are throwing everything possible at him to get rid of all the cancer.
He sure will be ill after such drasic surgery, and the chemo and rad might not be easy, but if you read a lot of posts on this site, you will find many people who have had positive outcomes from oral cancer, even at Stage 4.
It certainly sounds as though they've been so aggressive with treatment because they think it will improve his prognosis.
From what I've read, positive margins sounds really good!My carcinoma in jaw id 'undifferentiated'--which means the margins are NOT positive or 'clean', therefore my surgery was cancelled--no point!

Pre-biopsy, my jaw was VERY swollen and painful, and I had huge difficulty opening my mouth and eating. It took a while to all 'settle down', but there was a huge improvement in jaw mobility and lessening of pain afterwards and I've put back on the 7Lbs I'd lost!

Your 'From' says GB--Great Britain?? If so, ring the MacMillan nurses--they are a huge source of information and counselling!

I'm sorry I can't answer your questions directly, but know we're all here to help if we can!

Brenda

I'm sure people with similar/same types of cancer will soon be on here to answer you.

I DO understand your fear though, for me it was better 'knowing', but the end result was better than my initial fears--In March, I didn't think I'd still be here now!

Thanks Brenda, perhaps a misunderstanding his positive margins relate to the presence of cancer cells to tissue surrounding the site after removal of the tumour. Aggressive tretment is due to his age, I think. Have been in close contact with mac nurses they are good..but their answers so vague, we feel so in the dark.

Hi, Jac and welcome to OCF! Keep reading, and feel free to ask any specific questions you may have. There are many caregivers here who can certainly relate to what you're going through at this time, and what you two will endure in the near future.
We're all in this together! Let us know how we can help you...

Lois & Buzz in NC

Hi, Jac. It would be helpful if you could give us some time frames, like when your hubby's surgery was done,[it helps to know where he might be in the healing process. Also, What kind of radiatio and chemo is he having- how often for each? You are both in for a tough few months, but hopefully he will come through this well. Is your calendar clear? Will you be his primary caregiver? Do you have any family to help you? You are likely to have alot of responsibility over the next months. [and additional stress]. As to getting vague answers from the Docs and nurses- that is par for the course. First of all, no onae can say for sure how a patient will react to radiation and or chemo. It makes some people really sick, others do pretty well. My suggestion to you is to read all you can here about what folks have experienced during rad tx. and chemo- not to scare you, but to prepare you for what you need to be looking out for during his treatments. For me, it was far less scary to be forewarned and somewhat armed with some basic knowledge of what could happen. Please do keep posting. You will get very good support here. Best wishes. Amy in the Ozarks

Hi Jac

liz here from north yorksire uk.
Dont set too much importance on percentages and chances of recovery.This disease is notoriously fickle and changes all the time.

My husband was considered to have been caught early,and was given a 98% chance of a full recovery,at the same time a another brit joined this forum with a stage 4 diagnosis he like Robin was a heavy drinker and smoker,and his cancer was advanced.He had chemo and radiation as a precursor to surgery,but didnt need the surgery because the tumours were totally irradicated by the chemo/rad.Robin had surgery first then radiation and no chemo,and he had a recurrance within a few weeks.

Allan is now eating and drinking and enjoying riding his motorbike and took a holiday on his narrow boat,and my Robin has been gone for three months.

Bottom line Jac no two stories will turn out the same,so don't get involved in percentages and prognosis,just take everything one day at a time,deal with set backs as they arise and always believe you can do this together.

There are many many success stories here ,so draw strenght from that.Ask the right questions and come and see us as often as you need to.

good Luck
love liz

Thank you for your posts! You are so thoughtful to reply. I suppose in my inital osting I rambled trying to get all down in as little time as I could.
DH was diagnosised by biopsy at end of June, surgery begining of September, delay our doing as we really wanted to explore all options, salvage, jaw and teeth removal, neck dissection, removal of lymph nodes and tonsil seemed so dire when we knew so much. We start 35 radio treatments on Monday at the same time DH admitted as inpatient for 1st of 6 chemo sessions, 3 now and 3 towads the end of his radio. Afraid I don't know the names of these, will find out on Monday. I have read with intrest about reoccurance and am aware of the likely hood in our case. DH has been a smoker for about 20 years and though it shames me to say it, he has returned to this habit only weeks after his surgery. I am frustrated by this but accept that he is entitled to make his own choices in life. I pound these keys looking for answers and have discovered that no one has one, I amazed at how little information I can find about this cancer and horified at the quantity of people so desperately trying to make sense of this all. At the moment I am in an animated limbo and could do with all the help and support i can get, thanks for listening!

Hi Jac,

I am a 38 yo male who had a lump removed from my lip 3 weeks ago by my dermatologist. I got a call a few days ago saying that it was cancer and she was setting me up to see an ENT. I go Tuesday.

Since that call, I too found myself searching for answers on this type of cancer. You are right to say that there is little information on this disease. We hear daily about Breast Cancer Walks, the importance of Prostate screenings, and the no smoking campaign; but no one is preaching Oral Cancer prevention! Why not? From reading these boards (and I have read them alot in these last few days) it seems that this cancer is a big killer! The numbers are astounding! So many lives changed because of a lump in your mouth! We need an organization to tell the world to get those lumps and bumps checked out! Whether they hurt or not. I finally went to my dermatologist because it started to bother me while eating and I would hit it with my fork. I keep thinking I waited too late!

I feel so blessed to have found this website! Thanks to all for your support!

Jac,every thing you could possibly need to know about this disease is right here on this site.you dont need to look any further.

When you arrive at the home page,underneath the survivors /patient forum,you will see a list of other sections of the site.They start with facts on oral cancer,symptoms,diagnosis,treatment,side effects,staging,prognosis,after care,and when you log in to the boards you will see a search engine at the top of the page and another at the bottom.Type in any subject you like and it will bring up all previous posts that have any reference to your question.

This really is a one stop shop!!!

Thanks for your posts they helped a lot. My husband had tooth removed at begining of year as he thought it was cutting into his cheek, we now know hat this abrasion was cancer. Dentist removed tooth, and niether cheek nor socket where tooth had been removed from healed. Over a period of 20 weeks he attended dentist and when pain was severe his gp, niether suspected anything. At the end of our tether we insisted that he be seen by an oral sugreon who subsequently diagnosed cancer. DH regularly attended the dentist, complained about the lesions in his mouth and all still undetected...why? Post diagnosis we were astounded to be told by dental clinic that it was not policy to screen nhs patients for cancer, even though we were private, coupled with the fact that I have a copy of the guidance material issued to all gb dentists on identifcation and referal of suspecious lesions to an oral consultant. By this scale my husband should have been refered by the second week automatically, not by the end of the 20th. Hindsight is a wonderful thing. We are angry and feel betrayed because this information is out there and many campagins do exist to inform us of the causes of oral cancer...just type it into utube to see some awful factual videos, but when those in charge of our care fail to recognise the symptoms we are in trouble. I don't know if our cancer had been caught earlier if it would have mattered much, but we'll never know. The campagin of awareness raising should be among our dentists and there should be a legal oblication for them to screen everyone. Sometimes I chuckle though because a family friend shares our dentist and apparently he makes such a fuss checking for abnormalities, she niether drinks nor smokes, I doubt very much after he has completed his check if he would spot anything...DH considered high risk, he smokes, but the gaping big hole and substanical lesion oh and a socket that didn't heal, never raised suspicion? Ce la vie mon cherie!