| | Joined: Jan 2011 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | OP  "OCF Down Under" Supporting Member (50+ posts)
Joined: Jan 2011 Posts: 63 | Hi everyone
After much hesitation, I finally joined the OCF thanks to my new found friends Christine B and Gabe! I am still unsure about the workings of this site so please bear with me as I learn!
My name is Liza, I am 43 and was diagnosed with SCC of the buccal micosa which arose from Oral Lichens Planus (very rare, I am told!!)I was being monitored by a dental surgeon for months. The Lichens eventually failed to respond to any treatment, the pain changed and it started to look a little angrier than normal.A biopsy was done which much to my dismay came back positive for early stage SCC. I then got referred to an ENT surgeon who recommended I have surgery and a neck dissection. Surgery was on 27/9/2010, 10 hours long, nodes were negative and all margins were clear.No radiation or chemo was needed at the time.
A few weeks ago, I found a lump in my neck, the size of a small pea. Went to see my doctor who who sent me for an ultrasound of my neck and a biopsy. However, the ultrasound showed another lump just under my jaw bone which I had noticed a few weeks after surgery. I just thought it was part of a gland or something to do with the surgery.The ultrasound report said it was nodule in my submandibular gland. But, I was told the submandibular gland was removed during my surgery!!My surgeon is cautious about what he thinks although he seems to believe the lump is something that is part of the work done in that area during the operation. God, I hope he is right!! But, I am terrified it will come back positive. Everyday is getting harder to get through as I wait for the phone to ring. All kinds of thoughts are going through my head..I have never experienced such fear in my life. I am trying to keep busy, and just praying to God constantly to give me courage and strenght.
I have already been in touch with Christine B and Gabe who have been so helpful and kind with her advice. Thank you Christine and Gabe! I was just wondering if there are any more buccal mucosa cancer patients on this site? It seems to be quite rare.
Have a nice day :-)
SCC of the Buccal Mucosa (R cheek)- T1N0M0.10 hour Surgery on 27/9/10 involving resection with freeflap from radial forearm..clear margins. Neck dissection..negative nodes.Trachy, NGT, no rad or chemo needed at the time. Neck lump positive for SCC..again! MND 14/2/11. Waiting to have chemo and rads
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hi Liza:
I have not had buccal mucosa cancer, but understand it is very rare. I pray that you are rid of any cancer now and that your biopsy will come back negative. I know exactly how you feel about being so nervous; I go nuts until I get results of any test(s) I have, but I pray the good Lord will be with you and you will have good results. Happy to know you. I'd say try to relax, but I know that's not possible. Let us know when you hear something.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Hello Liza! Welcome to OCF! Glad you found us, sorry you had to! First...ease your mind. We have a saying on these boards that it's not cancer until the biopsy says it is. Waiting can be a cruel game, but put it out of your mind. Just breath and believe. Know that fear and anxiety are only in your mind, thus they are in your control. If you are having trouble controlling those emotions try chemical assistance. I'm an advocate of medical marijuana. Now I do NOT condone smoking it...but vaporizing it or using it in food products are just the ticket. It'll help your appetite too If you're opposed to that, ask your Dr about anti-anxiety meds (scripts never worked for me) to help you get your head wrapped around your emotions. Yoga or meditation is another route...personally I would combine MJ with the yoga as it helps keep off the unwanted pounds and keeps my swimsuit physique  Anyway, keep your chin up and keep using this site for the great advice and support that people like Christine are so adept at! Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jan 2011 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | | OP "OCF Down Under" Supporting Member (50+ posts)
Joined: Jan 2011 Posts: 63 | Thank you for the welcome Eric!! Nice to meet you! Fear and anxiety are definitely horrible emotions..at the moment I am managing with meditation and prayers.I constantly remind myself that living is for today, tomorrow is not in my control!! Plus, I have to stay strong for my family. But, heck its not an easy road to stay positive all the time so I give myself permission to fall apart if I have to :-)
Keeping fingers crossed till the results come back. Till then I hope to just breathe!!
Liza
SCC of the Buccal Mucosa (R cheek)- T1N0M0.10 hour Surgery on 27/9/10 involving resection with freeflap from radial forearm..clear margins. Neck dissection..negative nodes.Trachy, NGT, no rad or chemo needed at the time. Neck lump positive for SCC..again! MND 14/2/11. Waiting to have chemo and rads
| | | | | Joined: Jan 2011 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | | OP "OCF Down Under" Supporting Member (50+ posts)
Joined: Jan 2011 Posts: 63 | Thank you Julieann for your well wishes. Appreciate it greatly :-)
SCC of the Buccal Mucosa (R cheek)- T1N0M0.10 hour Surgery on 27/9/10 involving resection with freeflap from radial forearm..clear margins. Neck dissection..negative nodes.Trachy, NGT, no rad or chemo needed at the time. Neck lump positive for SCC..again! MND 14/2/11. Waiting to have chemo and rads
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Yea Liza, welcome!!! So glad you joined OCF!!! Now you will have the whole world in your corner
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: Jan 2011 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | | OP "OCF Down Under" Supporting Member (50+ posts)
Joined: Jan 2011 Posts: 63 | Christine, it's because of you that I put my fears aside and told myself I had nothing to lose but everything to gain. So, thank you for being there for me and for the special person that you are :-)
Liza
SCC of the Buccal Mucosa (R cheek)- T1N0M0.10 hour Surgery on 27/9/10 involving resection with freeflap from radial forearm..clear margins. Neck dissection..negative nodes.Trachy, NGT, no rad or chemo needed at the time. Neck lump positive for SCC..again! MND 14/2/11. Waiting to have chemo and rads
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Hi and welcome to OCF from a fellow Aussie Liza, I am glad to see you found your way here and once you get to know us you will find we are not scary at all  There is nothing wrong or even unusual about the fear and worry you are experiencing and waiting for test results is just the pits! How long do you have to wait? When you get a chance just add a signature so people here can see that summary every time you post and this helps with replies. Got to MY STUFF, PROFILE, scroll right down to the bottom and add it where you see Signature: (up to 300 characters) You may use UBBCode in your signature. You can cut and paste mine or someone elses and edit it to fit your profile if you like. Thinking of you and wishing a clear result from your tests but in the meantime come here for any questions you have. Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jan 2011 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | | OP "OCF Down Under" Supporting Member (50+ posts)
Joined: Jan 2011 Posts: 63 | Hi Gabe
Thank you for your help..I did have a signature but it disappeared somewhere! Awaiting results is definitely the pits...it sucks to be in this position.The biopsy was done last Thurday so I hope the results will be out today or tomorrow.I am encouraged by so many stories of courage, strenght and survival on this forum...I wish I could channel some of that courage at the moment!! I hate being this terrified! Anyway, there's not much I can do apart from keep busy and try to focus on other things.
Thank you for your positive thoughts..I appreciate it so much. It's heartening to know that even strangers from the other side of the country and/or world are thinking of me.
Have alovely day :-)
Liza
SCC of the Buccal Mucosa (R cheek)- T1N0M0.10 hour Surgery on 27/9/10 involving resection with freeflap from radial forearm..clear margins. Neck dissection..negative nodes.Trachy, NGT, no rad or chemo needed at the time. Neck lump positive for SCC..again! MND 14/2/11. Waiting to have chemo and rads
| | | | | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Hi Liza
I'm sorry to hear what a tough time you are having at the moment. Waiting to hear biopsy results is awful - somehow, when you KNOW, you can deal with whatever the outcome. Members of OCF understand what you are going through. We have been there in one way or another. I had a neck dissection also and there is a lot of scar tissue and swelling involved, hopefully your symptoms are tied up with that.
I'm so pleased you have joined OCF. As Christine says, now you have the world on your team! Please let us know your biopsy results.
Have you looked at the main OCF site? It is full of useful information.
Thinking of you and wishing you well, love from Helen
RHTonsil SCC Stage IV tx completed May 03
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