#18405 08-09-2005 09:16 AM | Joined: Aug 2005 Posts: 12 Member | OP  Member
Joined: Aug 2005 Posts: 12 | I am so glad we have the internet. It can be a scary place with all the facts but it has become a great place for support too.
I went to my doctor last week because of some white patches on the sides of my tongue that do not come off with a tooth brush. They did a test and it's not thrush so now I'm off to the ENT... NEXT WEEK! The wait is killing me. Anxiety, tears that won't stop. I know that I should not panic. But I feel in my gut this is really bad.
So I've been "lurking" in the fourms hoping to find answers and I've finally decided to post a hello. I hope you don't mind that I've not been diagnosed yet, but I'm a wreck and need someplace to talk.
My boyfriend won't even look in my mouth, "what do I know I'm not a doctor". I can see he may not be my greatest source of support. Did anyone else start out with white patches in their mouth. I don't have any lumps in my mouth but I do have what feels like a sore gland, but it's not bigger than the one on the other side. | | |
#18406 08-09-2005 09:55 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Hello Cali Girl
Don`t feel bad about posting here. You are scared that`s reason enough.
Some times just the thought is enough to send you into a downward spiral!
We usually tell folks, it aint cancer till the Doc`s say it is, there are many other things that could be causing your symtoms.
Let us know how you get on with your ENT appointment , and hopefully it will all turn out OK.
Take Care
marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#18407 08-09-2005 09:56 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | OK
First relax, we have a saying here, it ain't cancer till the Docs says so.
It could be so many things, and even if it is serious you have spotted it early.
I wont say don't worry because you will, but try to stay calm, they chances are it is nothing serious...
Stay with us and keep us informed and don't be afraid to post again between now and your appointment with the ENT... We all know how to worry........
Sunshine... love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#18408 08-09-2005 11:35 AM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi,
It is understandable that you are scared. Not knowing and waiting are very difficult. Bear in mind that there are many things that can present themselves as white patches, only one of which is cancer.
You are lucky to have noticed it and smart to have gone to get it checked. If it is cancer, or a precancerous lesion, early detection is so important. So many people ignore these things and that can be very dangerous.
Don't hesitate to ask us questions and please be sure to let us know what the diagnosis is.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#18409 08-09-2005 04:40 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Cali Girl, Hang in there and Think positive! Amy
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
:
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#18410 08-09-2005 04:44 PM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2005 Posts: 497 | Hi Cali. Lets hope for the best. I know its hard but we are here with you. Keep posting and keep hanging in there. Fingers crossed that its not.
Blessings,
Barb~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#18411 08-11-2005 06:12 AM | Joined: Aug 2005 Posts: 12 Member | | OP Member
Joined: Aug 2005 Posts: 12 | I got the hard copies of my labs from the mouth swab back today. They were:
No white boold cells - assuming that is good
Rare epithelial cells - this is scaring the beejeeebers out of me!
Few Oral Type Flora - sounds good to me
Anyone know about that Rare ephithelail cells part? Is that good or Bad? | | |
#18412 08-11-2005 07:12 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | No white blood cells would mean there is no infection.
Few "oral type flora" would mean that your viral or bacterial loading is within normal limits (i.e. thrush, fungi)etc. We all have some of this in our mouths.
I would be asking the doctor for an explanation of the "rare epithelial cells".
A mouth swab does not have the degree of accuracy that a biopsy does and it is mainly a pre-screening tool.
Like with Hep C they can give an antibody test but it has a high "false positive" rate. They always confirm hep C with a PCR/DNA test which is 99%.
Don't freak out yet. Are you seeing an ENT or head&neck surgeon? Reread Helens post from 8/09
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#18413 08-18-2005 10:39 AM | Joined: Aug 2005 Posts: 12 Member | | OP Member
Joined: Aug 2005 Posts: 12 | Hello all, well I had my appointment and the ENT did not seem to be the least bit concerned about my mouth and throat. She did say I have developed "hairy tongue". Since the white patches on the sides of my tongue have disappeared, she thinks it was caused by stress (grinding teeth and chewing). She looked down my throat and said that it looked fine. I feel good that she didn't look into my mouth and say, "OH MY GOD! Why didn't you come in sooner".
Since there has been such a sudden change and shift in the way my mouth looks (went from light pink inside my whole life to red and very veiny) she wants to see me back in 2 months and is running an ESR (Westergren Sed Rate) blood test, though I think she is only doing this because I was more concerned about the whole thing than she was. She said this is not a test they generally do and it is broad sprecrtem, but might help rule some things out.
I have learned so much from you all, first and formost, pay attention to your mouth. When this all came about, all I kept thinking was, "why can't it be in someother part of my body that wouldn't be so obviouse or dibilitating?" HOW VAIN IS THAT! I'm ashamed of myself for even thinking that way. I walked for two weeks in your shoes and all I can say is I have the utmost respect and am in awe of your tremendous strength.
I'll keep you posted should something develop, but in the mean time, I'm going to celebrate the good news! God Bless and I'll be keeping you all in my thoughts and prayers. | | |
#18414 08-19-2005 03:03 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Congratulations. Hope to hear nothing but good news from you.
Enjoy the celebration.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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