#74146 05-09-2008 07:29 PM | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | Hi -
I'm scared.
I was diagnosed today with squamous cell carcinoma - the biopsy was of the buccal area near the right mandible. I don't know what stage I am in. I am seeing a surgeon Saturday.
My story started In Feb. I thought I had brushed my teeth too hard the day I was to go for a cleaning. A couple weeks later, the area had ulcerated & I went back to the dentist. He took an xray & He sent me to a periodontist who sent me for a root canal. The area didn't heal after antibiotic treatment, & I went to a dental surgeon, who took 2 biopsies. He said in his 30 years he had never seen anything like mine.
At the least, the oral surgeon said I would have teeth & part of my jaw removed, with a plate perhaps implanted. I'm not going to look that far into the future. I hope the dr. can fix this thing, but the survival rate looks lousy. This came out of the blue, & I'm scared.
I just celebrated my 67th birthday 5/3. I'm a semi-retired writer & family entertainer & was looking forward to full retirement and enjoying life.
I don't want this thing...I want it out of my body.
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: Apr 2008 Posts: 26 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2008 Posts: 26 | Hello,
How scary for you. Try not to focus on the negative you may read but see that there are MANY survivors here. Take a deep breath and take this one day at a time.
Last edited by Missymoo; 05-09-2008 08:07 PM.
Daughter of father (71) who has SCC in cheek, hyoid bone and lungs. 3 X paclitaxol and carboplatin every 21 days.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Before anybody does anything to you, you need to get a consultation at a comprehensive cancer center. There you will be evaluated by GROUP of doctors from different disciplines, radiation, chemo, surgery etc. and together they will come up with an ideal treatment plan for you. There are likely more test that need to be done before they begin anything. A complete head and neck MRI and a chest CT scan to look at your lungs would be minimum.
This is all scary, and all that you are feeling is appropriate and normal. But the shock of it all will be more controllable when you find yourself in the care of a competent group of head and neck cancer specialists. There are a ton of great cancer centers in the north east. Don't let geography decide where you will be treated. This board is full of people that have been though it all. We will help you understand your options, make good choices, and listen when it all seems to much.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi Marlene
I am sorry for your bad news,but please please don't let statistics and the internet colour your view of oral cancer too much.
Yes it is a terrible disease,but it is not incurable,as you will find out the longer you use this site.Many many of the members here including our founder and his side kick(gary) are long time survivors and as an 11 year survivor friend of mine says "still kicking it"
don't despair,gather all your diagnosis information then come back and see us and i am sure there will be loads of help and advice,not least from our two resident dentists wilcks and mike
good luck liz
Last edited by Cookey; 05-09-2008 11:34 PM.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | Thanks for all your comments. You've all been through that first-diagnosis stomach churn, & your comments lift my spirit.
I am having a ct scan and another read on the biopsy...something didn't look right to the ent surgeon. He is not quick with the knife & am glad.
Marlene
Last edited by Brian Hill; 05-10-2008 05:05 PM.
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Hi, Marlene, Please take Brian's advise and get the best consults you can-by the best experts. We are the same age and I know what looking forward to "retirement-play" years mean. Best luck to you going forward. You have found a great resourse\support center here. Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
| | | | | Joined: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2007 Posts: 580 | Marlene,
My thoughts and prayers are with you.
Get the best assessment you can at one of the CCCenters as Brian has already stated. The benefits to you will be great if you have experienced and skilled clinicians. We are all in your corner and will most certainly offer any advice, information and opinion you require.
Be your own best advocate by getting the best advice available.
Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Marlene, I am in your same age group also..had my SCC on the upper jaw....did not go to a comprehensive center but wished I had. My advice....call the CCC tomorrow and get the appointment process begun....You can complete the testing that you have begun, but the CCC will want to see all tests and results, and they might do more. With this scary stuff, you need to know that you have gone "to the top of the mountain" to get the very best, most knowledgeable treatment and the best support and guidance system available. I was lucky (so far) and feel that this stuff is "out of my body," but there have been many times when I wished I had gone to the CCC, if only for my peace of mind. That peace of mind is worth a fortune. Don't deny yourself that knowledge.
You will take this one step at a time, and you WILL get through it. It is simply NOT how you pictured spending the next year of your life, but I can tell that you are spunky and smart, and after you get a plan, you will be like a bulldog fighting this beast tooth and nail!!
We're here, and you were fortunate to find this great site. Get some more information....and I hope that you'll take the advice to go to a CCC for a second opinion and a suggested treatment plan.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Jun 2007 Posts: 510 | Hello Marlene and welcome to OCF: As you can see by the 'signature', hubby was dx with SCC in May of 2007. He thought he had an abcessed tooth. Thank God the dentist recognized scc and immediately referred to oral surgeon for biopsy.
It's been almost a year now! I just want to encourage you and reassure you that there IS life after surgery, chemo and radiation!
Try to concentrate on the positive and know that you, too, can get through this. We are here to help you if needed.
Lois & Buzz in NC
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | That is good advice Lois. There is much life after surgery, just not much taste in the food . LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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