#26252 03-29-2004 02:06 PM | Joined: Mar 2004 Posts: 6 Member | OP  Member
Joined: Mar 2004 Posts: 6 | I am scared. I have a tongue growth, and don;t know what it could be. I am scaring myself to death by reading information on the net. I have some appointments coming up but it is not soon enough for me! I am young and have never smoked etc. I don;t understand. My growth is on the side of my tongue, it is small about the size of a pea (maybe a little smaller) and appears to be filled with blood. It doesn't hurt, and I have had it for two to three months, I have been waiting for it to go away. It hasn't changed during this time. | | |
#26253 03-29-2004 02:59 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hi Crystal,
We have a creed of sorts that goes: "It isn't cancer until the pathologist says so."
There are a number of things that aren't cancer that happen in the mouth. However you need to follow through with the process of having that thing looked at and perhaps a sample sent to a pathologist for testing. While this may be scary, there isn't a shortcut, and we can't diagnose the problem. The good news is if you are young, have not used tobacco, your risk for oral cancer is low.
Be persistant in following up with your doctors, because on the remote chance it is cancer, then the sooner you know the better. And please let us know how things turn out.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#26254 03-29-2004 04:17 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hi Crystal,
First thing to do, CALM DOWN!!!, It isn't oral cancer til they say it is. So right now you don't know. Like Mark says it can be many thing's without being cancer. Who do you have your appointments with? I would make sure I had a ENT look at it and have them biopsy the sore, The pathology report will let them know for sure. Please let us know after you have it checked out, We love to hear good news!!!! Think positive and have faith.
Dan
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#26255 03-30-2004 12:39 AM | Joined: Mar 2004 Posts: 6 Member | | OP Member
Joined: Mar 2004 Posts: 6 | Thanks!! Right now I have an appointment with the Dentist today 3/30/04(second look) and an Oral surgeon on 4/5/04. I am trying not to be scared but I look at my one year old son and can;t help but be scared for him (and me)Today I will make an appointment with the ENT becasue I had not thought about that before. Thanks for the advice. | | |
#26256 04-01-2004 07:01 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Crystal,
I would suggest you get life insurance before your visit. You can always cancel it but in the unlikely event it is cancer, you won't be able to get it once it is diagnosed (for several years, at least). Ditto on LTD insurance, too. I didn't believe it could happen to me and now that I am ready to go back to work, the company is out of business, no longer paying me short term disability and my LTD ends when the company folded. Better safe than sorry.
Good luck on your doctor visits and I hope it is good news!
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#26257 04-01-2004 07:04 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I apologize to everyone for my candid advice and I truly hope nobody is critical of me for such candidness. It seems like sound advice and all of us have tried to increase our coverage after diagnosis...I hope!
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#26258 04-01-2004 07:15 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 | Actually Ed if I had it to do all over again I would have gotten mortgage, credit card and life insurance. If it is a positive Dx, you won't be eligible for this kind of coverage for 7 years. If you don't yet have a Dx, this is your last chance. It's actually very good advice.
Gary Allsebrook
***********************************
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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#26259 04-01-2004 07:28 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I think especially if you have children. I remember having my wife literally prop me up while we went to the lawyer for the will, the mortgage refinancer, the car dealer, etc., to get everything in order in the middle of treatment. I managed to get the house refinanced and bought her a car but the insurance thing just didn't work out. Thank you for being kind. 
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#26260 04-02-2004 10:21 AM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2002 Posts: 458 | Ed, it is actually very sound advice, also double check what's going on with your health insurance and how it interacts with the hospital. Luckily mine is very good, but the hospital doesn't bill direct for outpatient procedures. So, out comes the credit card for such things as doc visits, chest x-rays etc. However, the cancer center in the same building is apparently administratively bookkeeping wise does bill direct for outpatient services, to the PET/CT bills direct.
One issue that came up recently though is that due to an administrative error in my company I'm not covered in U.S. or Canada. I've got coverage everyplace else in the world, but if I should decide ever to move back to U.S. it would be without health coverage, or at least the cancer would be excluded.
Also checked the cover after I had 2 lengthy inpatient admissions and had the usual semi-private room, and found my insurance covers private room. So, check the cover and the fine print to make sure what you have.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#26261 04-03-2004 12:59 AM | Joined: Mar 2004 Posts: 6 Member | | OP Member
Joined: Mar 2004 Posts: 6 | Tbanks for all of this great advice. At my last appoitment they said they want to watch it until Tuesday. They believe it is an abrasion from rubbbing against a sharp tooth. Hard for me to believe. | | |
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