| Joined: Nov 2013 Posts: 34 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2013 Posts: 34 | 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
nov 2013 ssc of buccal mucosa stage 2 jan 2014 neck dissection because of cancer in lymphnodes feb 2014 6 weeks of radiation march 2015 tumour buccal mucossa stage 4 june 2015 lower jaw removed nov 2015tumour in left node on neck jan 2016 radiation and chemo to commence Nov 2015 left deck dissesction,1 posative node
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | 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
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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.
Last edited by Cheryld; 11-15-2013 07:04 PM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Nov 2013 Posts: 34 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2013 Posts: 34 | 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
nov 2013 ssc of buccal mucosa stage 2 jan 2014 neck dissection because of cancer in lymphnodes feb 2014 6 weeks of radiation march 2015 tumour buccal mucossa stage 4 june 2015 lower jaw removed nov 2015tumour in left node on neck jan 2016 radiation and chemo to commence Nov 2015 left deck dissesction,1 posative node
| | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | 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
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | 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.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Nov 2013 Posts: 34 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2013 Posts: 34 | 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
nov 2013 ssc of buccal mucosa stage 2 jan 2014 neck dissection because of cancer in lymphnodes feb 2014 6 weeks of radiation march 2015 tumour buccal mucossa stage 4 june 2015 lower jaw removed nov 2015tumour in left node on neck jan 2016 radiation and chemo to commence Nov 2015 left deck dissesction,1 posative node
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | 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.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | 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.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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