| Joined: Feb 2011 Posts: 3 Member | OP Member Joined: Feb 2011 Posts: 3 | Hello all...another worried newbie here.
My wife (45 non-smoker, very light drinker, awesome mom to an equally awesome 5yr old boy) had her routine dental checkup a couple weeks ago. The dentist spotted a small white legion on her tongue that he said is "probably nothing - but you should have it checked out� and referred her to an oral surgeon. So the next day she calls the oral surgeon and he schedules her for an appointment a couple weeks out.
Later that day, the dentist�s office calls and says they don�t want her to wait that long and told her to call back and talk to a certain person who would get them in sooner. So � in the space of 24 hours it went from �probably nothing� to �don�t wait 2 weeks� � which of course sets off flags that the dentist was initially more concerned than he was letting on. So she calls the oral surgeon back and they get in her in 2 days instead of 2 weeks.
She has the appt � the doc says it�s very small, but should be biopsied as there was a chance it could be cancer. He did stress that the odds are in her favor as he thinks it�s very early if it is cancer � so for that I�m thankful. But given her slate of other unexplained symptoms (most notably intense fatigue, random skin rashes and persistent sore throat) I�ve read just enough to freak myself out.
Anyway, the biopsy isn�t happening for another 2 weeks, so I�ve got a bunch of time to fret, all the while doing my best not to let on how worried I am as I realize there�s a fair chance I am indeed fretting over nothing. I�m figuring the surgeon isn�t as worried as the dentist or he would�ve scheduled the biopsy sooner. My wife seems remarkably unconcerned by it all � which I think is likely a good thing � wish I were handling it more like her.
Thanks to all you courageous folks who are fighting the good fight, for the safe place to get my thoughts out. Good luck to all of you.
peace!
| | | | Joined: Dec 2010 Posts: 99 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Dec 2010 Posts: 99 | Hi Fletch You sound like me two years ago, except there was two years between finding the spot and having the biopsy so you are way ahead in the game which is so important we found out. My advise is continue reading/learning all you can to be your wife's advocate. If the biopsy does come back positive go to the best cancer center you can for this type of cancer and start there with treatment. We didn't, went for convience and the dr who told us what we wanted to hear but we didn't know enough to make a good decision. It did not work out the best for my husband. So now we are in a difficult situation. The best advice I would give is follow you gut feelings even if your wife objects which is hard to do sometimes as you want to portray being positive and optimistic to your wife when you are scared shitless. Even if the biopsy comes back "irritated tissue" follow up regularly with your dentist if it doesn't go away. Hoping the weeks go by fast and wishing you two the best.
PS: You are doing the right thing. Each of us handles things differently in this situation. "handling more like her" - that is what she needs to do but trust me it is affecting her - you are doing what you have to do for you too. Your okay.
Karen
CG 2 Emmett,7/09 DX SCC rt tongue. T2N1M0, 1 node, marg neg.4/10 PET/CT clear, 9/10 C back. 10/10 Rad hemi, 2 tmrs mod diff. resec flr of mth. Flap 4 nodes/w/ext cap. 11/10 Peg, CX3 HD, 30 rad. 1/31 & 3/21 6/11/11 - PET/CT "activity" 9/11-all Clear. 12/11 peg out. 2/15 still all clear! 9/14 Prostate cancer treated with pencil beam proton therapy, best radiation experience. Keep it in mind as a treatment option for all tumors that can be seen including head and neck.
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | You have an AWESOME dentist and regardless of the end result, please congratulate and thank them. Tell everyone you know about this Dental Office. Great job. Many of the people who post here would have been diagnosed FAR earlier (and I know of one who would likely still be on this earth), if they had your dentist.
More importantly to you, however is the probability that it is cancer. First of all I have had two bouts with it and never had any of the symptoms you describe - such as tiredness, rashes, etc. Ear pain, lumps and pain of the lesion itself are signs of a more advanced cancer so the fact that she doesn't have those symptoms is a great sign.
Even if it is cancer, caught early this disease IS curable. You need to be persistent and vigilent for the rest of your life, but it IS curable if caught early.
Waiting is hell and none of us are very good at it. Keeping busy, knowing that its not cancer until the biopsy says it is, and that the odds are WELL in your favour can be consolations while you wait - first for the biopsy and then for the pathology. Not sure which wait is uglier. They both suck. Keep posting, we understand. In the meantime, try not to let the fear of cancer steal days away from you. You have a 5 year old to keep you busy. And P.S. don't believe she isn't concerned. What is happening is that she is protecting her family - if she shows her fear it would scare you more. We all cope in ways we can. We're here for you. Keep us posted.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | 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 | Not suggesting that it will but IF it does come back as squamous cell then you really need to take her and her cancer slides to the nearest CCC. CCC's http://www.oralcancerfoundation.org/resources/cancer_centers.htm BEST CANCER HOSPITALS http://health.usnews.com/health/best-hospitals/cancer-hospital-rankings/
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.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | David just gave you some sound advice.
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
| | | | Joined: Feb 2011 Posts: 3 Member | OP Member Joined: Feb 2011 Posts: 3 | Thanks all for your thoughts (and thanks David for the handle fix!) - it is a help to have a place to put my thoughts. Doing my best not to fret too much.
[quote=Pandora99]You have an AWESOME dentist [/quote]This point cannot be emphasised enough.
[quote=Pandora99]its not cancer until the biopsy says it is [/quote] Nor can this one - thank you - I've been mumbling this to myself regularly since reading it.
peace!
Mike - worried husband anxiously awaiting results of wife's 3/1 biopsy.
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Mike,
First, Welcome to OCF, glad you found us, sorry you had to!
The more information you have the better...but it can be pretty scary stuff if you don't get the "whole" picture.
There are several conditions that could be going on in your wife's mouth causing a lesion or discoloration...it doesn't have to be cancer which is why we say it's NOT cancer until a biopsy says it is.
The lesion could be Lichen Plantus or Candida, leukoplakia etc...which is why it should be checked and biopsied. I agree that the Dentist was awesome, shake his hand for me next time you see him. Ease your mind, wait for the biopsy results and just enjoy life. Even if it is cancer...there are so many survivors on these forums that are living examples that this disease isn't an automatic death sentence. In fact if caught early the odds of survival are fantastic.
Keep your chin up,
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: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | You're where I was almost five years ago, when my husband's dentist identified a white patch (leukoplakia) on his tongue that hadn't been there at his previous cleaning. The pathology report on an oral surgeon's initial biopsy of a very small part of the patch was "moderate dysplasia" (abnormal, but not cancer), but the report warned of a possible "skip effect" -- meaning that cancer cells could be hiding in an area not taken in the biopsy -- so there may have been something suspicious in what the pathologist, who specializes in oral pathology, saw. When the whole thing was removed by an ENT a month later, the report came back as SCC in situ, with a small bit superficially invasive.
Once he received a cancer diagnosis, my husband went to an oral cancer specialist at a comprehensive cancer center (CCC). Because the entire lesion was removed with clear margins, he has required no further treatment. He was checked frequently (every 6 to 8 weeks) at the CCC for the first year, then less frequently for the second and third years, and has now moved to yearly appointments; his dentist also checks him with a VELscope at each six-month cleaning. He's living proof that early detection does save lives.
I wish you and your wife all the best, and know exactly how you are feeling. Fingers crossed for a good outcome.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | Joined: Feb 2011 Posts: 3 Member | OP Member Joined: Feb 2011 Posts: 3 | Well....that was a very long wait - nearly 4 weeks for the biopsy and another 3 weeks for the results....but the news was good! Frictional Keratosis was the official diagnosis - basically she just has a callus on her tongue.
While I'm greatly relieved I do not need to stick around here, I do want to say that this is a remarkable community you folks have here. I read a bunch of threads here to try and be better prepared if we got bad news - and I'm in awe of the strength of the survivors and caregivers on this forum. My best to all of you.
peace!
Mike - worried husband anxiously awaiting results of wife's 3/1 biopsy.
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 |
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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