Hi,I was diagnosed with buccal mucossa 2 days ago,don't drink or smoke,had ulcer checked out by my dentist twice,was told not to worry about it.had cat scan today,no spread anywhere,dr said localized,go into surgery Thursday to have it cut out,they haven't told me what stage it is,I think they have to send it away,very frightened and confused at the moment

Welcome to OCF, Mandy!

Sounds to me whatever you have was caught very early if it is localized. Im assuming you mean you have oral cancer of the buccal mucossa (gums). Was it biopsed? Who is removing it?

If you arent comfortable with understanding everything that is going on, read and educate yourself, ask questions. An informed patient is able to advocate for themselves which can be necessary. There is so much important info on the main OCF pages and here on the forum we will help you.

Have you considered a second opinion? It probably would be a good idea to go to a comprehensive cancer center (CCC) and at least hear what they have to say. You have time if your tumor was found early. It could be a big difference in the quality of your physicians.

Best wishes!

Hi Mandy:
I think everyone deserves to get multiple responses to their first post. Unfortunately, most of us don't know much about buccal mucossa. I expect that is why you don't have many responses.

None-the-less you too deserve having people show they are interested in you as a cancer patient and member of this new family. So, welcome to the family girl. You now have a lot of new brothers and sisters who have something important in common with you, ie oral cancer. Either we have it, or we are caregiver to someone who does.

I wish I could give you specific advice, unfortunately that is not the case. I can however tell you I and many others are here to help you along the way. When you are feeling down, get on the forum and start writing. We know lots of ways to keep that depression demon on the other side of the front door.

So, don't be a stranger. Ask your questions no matter how trivial you think they are. Others who came before us helped us get through this, now we return the favor for those who come after us.

Welcome to the family Mandy.

Tony

Hi... I'm assuming you have cancer of the buccal mucosa - this in layman's terms is basically cancer of the lining of your mouth (buccal - mouth) ... it's usually cheek or gums. There are quite a few here who've had this cancer - is it Squamous cell? I'm assuming you've had a biopsy at this point so they should be able to tell you the type (squamous? Basal?)and the differentiation of the cancer (differentiation - is an indicator of aggressiveness - poorly differentiated is the most aggressive - well differentiated is the least). It helps to know this.
The best thing you can do is get treated for this cancer at a CCC - a CT may show no spread but what they don`t tell you is it can seed to the nodes in your neck and in the early stages (microscopic) it isn`t picked up on a scan. At a CCC they may recommend not only removal of the area but also removal of some nodes. This is usually the safest way to go - unless it`s HPV + cancer - which I think yours probably isn't.
Do your self a favor read up on your type of cancer and educate yourself. It will give you a good idea of what is NORMAL treatment for your type of cancer and it may give you answers to some questions you may have - and most importantly it will give you some questions you may want to ask your dr.

anyway... welcome. I am so sorry. I know this is terrifying but you can get through it and those of us here who've been there will do what we can to help. hugs.

i had my buccal mucosa tumour removed 2 weeks ago,they cut it out from inside my cheek,there was a clear margin right around incision,went back when patholigy results where in,they said they got it all so i needed no further treatment,iwas scared i was going to need radiation or neck dissection but they are just going to moniter me closely over the next couple of years

Hi Mandy:
I hope it works out just that smoothly for you. Depending on how often the docs are going to see you, you need to keep a close eye on the surgical area if you can see it. Be looking for anything unusual, unusual texture in the skin, unusual color, things that look like sores or ulcers, anything. If you can't see the area, maybe you can feel the area with clean fingers.

I would be inclined to do this "look" at least every two days for the next several months. If anything shows up and doesn't resolve itself within 2 weeks, it's worth a call to the doc.

I know you are happy with the news you've been given. But, it's time to remain vigilant.

If you need us, we are here.

Tony

Also keep a close eye on your neck area. This cancer can seed to the nodes and it is not caught on a scan in the early stages. So if you find a swollen lymph node make sure you go back immediately.

Welcome and best of luck.

I dont understand how a cancer that has been surigally removed with clear margins can appear in your neck nodes a couple of months later,if the margins are clear how did the cancer escape to the neck,im sorry just confused how this awful thing works

Cancer can go anywhere, but "usually" has a known path of travel like metastasizing through the lymph nodes, blood, vein or nerve lines, other nearby structures, and there can be secondary, synchronous or metachronous cancer from field cancerization from exposure to carcinogens, which is not always just tobacco. Clear margins may also differ between doctors what is a clear margin or not, I forget the size areas, but like one may consider 5mm clear, another may say 1cm, and then want further treatment to get any microcosmic cancer.

Good luck.

Most likely a small undetectable amount of cancer cells had already found themselves in the node(s) before the surgery and multipied until they were noticeable.

Hi, Mandy
The OCF Website provides Treatment Guidelines on this page: http://oralcancerfoundation.org/treatment/guidelines.htm
You want to find the type of cancer you had (Oral Cavity) - you can click through the standard of care treatments recommended. Whether or not neck dissection is generally recommend seems to depend on a number of factors, including the thickness of the tumor. You may want to print out the pertinent pages and ask your doctor about it.
One of my young friends - at the time a resident in pediatric oncology - told me that there are no dumb questions regarding cancer when my husband was going through his workup for treatment. There is nothing wrong in asking your doctors about the treatment. Bring a (mean) friend or family member (or a least a list of questions) when you see your doctor next.
Best wishes!
Maria

Yup to what david said. Cancer can seed to different places. If it comes in contact with a blood supply (which ultimately it has to to survive) it can spread to anywhere. It does have it's favorite routes. With head an neck cancer it's often the neck nodes. So what is likely to have happened is you have a primary tumor. It seeds to the nodes (one or two cells sit there dormant)

There is a theory that the Primary tumor is the boss, but like bad employees - when the boss is gone the employees begin to do their own thing.

There is also the possibility that during surgery some of the cells break away and end up in the nodes (the lymphatic system cleans the blood so it makes sense anything unusual in the blood would end up in the lymph nodes).

Regardless - this is why most surgeons who know oral cancer and deal with it all the time - tend to take a certain number of nodes as well. Particularly if the pathology comes back saying this is an aggressive cancer and it's non HPV.

This is why doing the minimal when treating cancer doesn't always sit well with me. No one every complained of having too much treatment... only too little.

hugs

had my first ultra sound since surgery,they are not happy with a node in my neck,have to have a pet scan now,my ultra sound asnt even read when I had my appointment with my ent I asked him what what the results where of my scan,he looked surprised and said he had better check.also have a sore spot on my tounge and under my teeth,but they don't seem concerned about those

The sore spot could be from your tongue rubbing on a tooth. If it doesnt improve in 2 weeks then it needs to get rechecked.

When will your doc get the scan results to review with you? Keep on them, dont let it get brushed aside and just filed into your chart.

its to far back on my tounge to touch my teeth,my tounge was a bit sore when I had the buccal tumour removed,the ct scan and mri would of picked up a tounge cancer as well wouldn't they