Cancerous tumour on floor of my mouth

Hi Garry and welcome to our select and friendly group. So sorry you find yourself here. 
chris2012 is one of our other Champs and he had a cancer in the same place. I’m sure he will be along tonight with some wise words. 
Im sure the hospital will take excellent care of you and make sure you are pain free. 
I didn’t have any lymph nodes removed so can’t tell you how it felt but it all depends how many they take. 
It might be a good idea to phone your Clinical Nurse Specialist and have a chat with her about what to expect as each of us is different. 
I know that some of our members have been in and out of hospital in a few days and others more than a week. It really does depend on what exactly the surgeon does

Do you have a date for your surgery yet and do you know what your cancer is? 

Hello beesuit,

it’s a squamous cell carcinoma.

 I don’t have a date for my surgery. Like almost everyone who is on this forum This came upon me out of the blue. It’s rocked my world and I’m scrabbling around for any information I can get. I have no life experiences like this to use as a reference as to what I can do, what will happen to me, and where to get help.

 That’s why I’m reaching out to the forum.

Garry

Hello Garryj

I had cancer in the gum area below my teeth on lower jaw, not exactly floor of mouth, but probably similar in terms of treatment. In my case the gum, 5 teeth and a layer of jaw bone were removed. Reconstruction from my arm (free flap). I also had a neck dissection. This was 8/9 hours of surgery, but the outcome was much better than my first fears suggested to me, because the surgeons are so skilled.

I was warned that a tracheostomy would mean I could not speak when I came round after surgery. My tongue was also slightly moved and nerves can be damaged during the operation. Nearly a year on my speech is normal, with perhaps a bit of a lisp.

After the operation I wasn’t in significant pain because the pain management drugs were very effective, although I do have some residual neck and jaw ache, but nothing that overly bothers me. I was in hospital for a week.

I took some time to be able to eat normally again, and had a liquid diet for a month or so. I now eat more or less normally, but avoid anything very crunchy or chewy and tend to pick soft foods.

All cancers are different and experiences will vary, and treatments for head and neck cancers are challenging, but my experience is that the outcome was better than I expected.

You will get plenty of support and advice here to help you through your treatment. Wishing you all the best. Cathyxx 

Garryj said:

I have no life experiences like this to use as a reference as to what I can do, what will happen to me, and where to get help.

And this is a good place for that. 
Don’t rely on Google. There is some good information there but it’s a real maze. 

Hi Garry. Welcome from me. Best advise I can give yiu keep off Dr Google unless you really know where to look you will scare yourself even more. If you’ve been given a Macmillian nurse or a c n s use them they are a mine of information. As Dani say am sure Chris will,pop in later .my cancer was tonsil with 7 effected lymph nodes but due to,positioning of my nodes surgery wasn’t an option I had 35 radiotherapy and 2 chemo. SCC cancers do respond well to treatment. Try to keep that in fire front if yiur mind. Yiu will be in a whirl we’ve all been there. I was 61 when diagnosed now almost 4 years in remission and living my life happily riding my bike just did 70 km today. 
Hazel x

Hi Garry and welcome from me.  My cancer is not where yours is but I've had 2 neck dissections, the last taking most from the RHS of my neck.  From my POV the dissections were easy to deal with and recover from.  Long term issues have now mainly gone after nearly 2 years.  Those that remain are not really causing me a problem.  Hopefully you will be the same.

Good evening Garryj, this is how i become aware of that something was wrong as i just thought it was an ulcer that would not go away, like you I had tests, scans biopsies done very quickly,in actual fact the biopsy was done after my first consultation as my consultant was 99% certain it was a cancerous tumour. A lot depends on what they find during the operation as i had saliva glands and lymph nodes removed as well as a full neck dissection. I had a forearm free flap on my right arm where they take a circle of skin about an inch and a quarter round along with a view from the same area, The reason i had this was that there would have been a hole in the bottom of my mouth where the tumour was so this flap is used to repair the hole also the took skin and tissue from my stomach and thigh to rebuild the gum and surrounding area, I think i had 3 teeth removed as they would have been in the way. It all sounds a bit frightening but it all comes together and recovery is very good. Your speech will be affected to begin with but it will gradually return to normal with the help of a speech therapist, I think i was in the hospital for two weeks and then sent home for recovery and healing. I would say its a good three months for recovery where things begin to settle down and normalise, eating and drinking will be difficult to begin with because the surgery has to heal up so i expect you will have a feeding tube (PEG) fitted which is a tube that goes directly into the stomach. The operation is not overly painful but you will most probably need stronger painkillers than normal. This operation does take a lot of healing as there are a few areas that have to heal i.e the forearm, stomach thigh and a change of dressing is required quite often. 

            I have written this on the basis of what i went through with floor of the mouth cancer but we are all different and it depends on the size of the tumour and how much of the surrounding area is affected this is why i say they dont know 100% until they start the operation. All my scars have healed up fine and you can hardly see where the surgery was. I had my operation done in 2008 so i would have thought procedures and technology have improved somewhat. I hope i have explained it clearly if not then please come back with any questions, sorry for the long reply, all the best,take care,

                                                                                  Chris 

I had mandibular floor of mouth scc surgery in October. I had a skin graft from my thigh. They removed some of my gum and partial tissue from floor of mouth. They sewed a sponge on top of skin graft to hold in place for ten days then removed. I was only in hospital two nights. No neck dissection and no chemo radiation as they found no cancer in the frozen margins or tissue to pathology. I had soft foods for about two weeks. Was painful but tolerable if you stay on top of meds and unfortunately I can’t take any opioids so basically liquid ibuprofen. Hopefully yours will be simple. This was my third surgery for oral cancer. First two on tongue. Just my case though. Everyone different. Wish you luck

carolyn 

Thank you Lynne,

your cancer sounds the most like mine. Mine is a 1cm diameter scc adjacent to the saliva duct. I naively thought they would just cut it out like  extracting a tooth. But it seems from the community feedback and your experience, that it is a much bigger procedure than I had hoped for. I guess I’ll have to wait for the surgeon to sit me down and explain the whole scenario.

the sooner the better, I want this over with.

thanks to all.

An update. I saw the surgeon today. He recommends the full neck surgery.removal of tumour,removal of nodes, and skin patch up from arm or thigh. Today’s examination showed the tumour to be 3cm by 1+ cm, and with the extra surrounding tissue he would have to remove he believes by just removing the tumour my speech and swallowing would be badly affected, and it doesn’t guarantee that full reconstruction would not be needed in the future anyway. So I am still processing it all, but at least I know now. Any advice you have I would be grateful, but in the meantime, thanks for your help and best regards.