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#134542 05-25-2011 07:36 AM
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Magz Offline OP
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Hey all... I don't know what else to do at this point

This feels so awkward to talk (type) about, but I am extremely afraid that I may have an oral cancer.

I first noticed that the insides of my cheeks had turned white in the month of January. I began reading up online and learned that this is one of the first most noted symptoms of mouth cancer, or a condition known as leukoplakia (sp?) I immediately went into an emergency dental clinic, where the dental hygenist assured me that it was "nothing to worry about", and that it would go away when I was less stressed. A second dentist that I saw told me that I needed to get a biopsy done.

I scheduled an oral biopsy. During the over month & 1/2 wait to get my biopsy done, I convinced myself that I was fine and did not need to get the procedure done. I've read horror stories about biopsies going wrong and ending with a patient with permanent nerve damage in the mouth, and this freaked me out. Furthermore, I kept thinking that I really did not want to know. So, I canceled the biopsy. That was the beginning of March.

Now here we are in the beginnings of June, and the patches have not gone away, but have rather spread, now along the sides of my tongue as well. I also have some tiny red areas that have been appearing and (kinda) disappearing. Also, within the past two weeks I noticed a swollen lymph node in the right side of my neck and some very acute very dull pain. I am now scared out of my wits - literally. I have been so depressed that I can barely get out of bed, let alone go outside. I've missed several jobs because the only thing I can think about is oral cancer. I have not even been diagnosed with anything, yet the dis-ease is ruining my life!! The more I think about it the more fearful and depressed I become. I have no hope for the future, and I cannot find any joy in my days. Most of all I am angry with myself for allowing myself to get this way.

I am a vocalist and musician, and I get a good deal of my income from singing/busking. If I cannot sing, my life is over. It is the only thing, besides my child, that I get enjoyment from. Music truly is my life and I cannot fathom radiating my vocal chords. That is one reason I suppose that I've been in such heavy denial. I just can't accept this.

On top of all of this, I am very much poor (I'm a musician afterall) and have no insurance whatsoever. I can barely afford to get the biopsy done, so how could I ever afford treatment should I have something?

I guess I am just a weakling. I have been reading around the boards for a couple days, and I really COMMEND some of you for how strong you are! I have tremendous respect for you all and the ordeals that you've gone through. I apologize for being such a wimp and for typing this negative garbage on your board. Please forgive me.

If it was not for my child and the fear of the "lake of fire", I would probably end it right now. I'm that down in the dumps, and I just don't know what to do.

Someone, please just tell me that I am going to be fine and that I am not going to die. Please...

Magz #134545 05-25-2011 08:34 AM
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Hi Uhuru, Welcome.

First off, I would like to say - even if it is oral cancer - it doesn't mean you are going to die. But denial is a good shove in that direction if it is cancer because the longer you wait the worst it could get.

It could very well be an infection - or something treatable - but it's been there long enough (5 months) that it's obvious it's not going away on it's own.

I'm sorry you're having financial trouble - I wish I could help by suggesting something - but I'm Canadian so I have no idea what services are available to uninsured people in the states.

I understand your carreer is important to you ( I'm an actor - had similar issues when I was originally diagnosed since my tongue and speech here obviously going to be affected). But your life is more important.

You say you have a child - this is who you should focus on - you want to be around for him/her foremost.

You're worried about getting a definitive diagnosis - afraid of dying, afraid of losing your career, yet you are letting this not knowing rob you living and enjoying your life, and your career, already. Plus not knowing could also kill you.

No one can tell you your not going to die, even the Drs., but if it is oral cancer (a big if since nothing has confirmed it) it can be treated. And the earlier the better.

Get a biopsy done ASAP! Don't wait a month. Don't talk yourself out of it. Biopsies are usually relatively painless, they will take from where they think it is worst - or maybe a few small areas, but unless they are taking large chunks out I can't see where there would be any kind of nerve damage. If it is going to hurt a little they will give you a local.

The lymph node could be anything - a reaction to an infection, or inflammation? But that's another reason you need to get a biopsy done.

If you get an all clear that's great - if you get a cancer diagnosis then at least you know and you can do what you have to do to fight it. Knowledge is power - it is the not knowing that has the potential to kill you.

If you have a close friend or someone who can support you get them to come with you - or talk to them at least sometimes hearing our fears out loud diminishes them a little.

But please get the biopsy as soon as possible.

Best of luck. I am sure someone else here who's American may be able to help with what's available in terms of support for people who are uninsured... Take care.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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I think you should get the biopsy, tell the doctor all of your symptoms and follow through with it.

Check around your area for financial support systems. Some hospitals have programs to help people in financial trouble.

The longer you wait the worse shape you can get in. I say all of this because I just last week got my biopsy and am currently waiting on the results. I won't lie...the wait is nerve wrecking, but you just can't let this go.

And please don't end it. You mean the world to your child, and your life does have meaning. Dark places can be lit by even the smallest candle of hope.

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Magz, I second all of Cheryl's advice and commentary. You need to know what you're dealing with and take charge of this pronto. I know that here in California there are programs for people without insurance, county hospitals and so forth. If you have no other resources try your county health department. I'm sure they can give you some suggestions.

I know it's tough to face a potentially bad situation. But you'll never know what it is until you get to a doc and get a biopsy. Take a deep breath, let it out slowly. If you're still feeling angry, turn that anger into proactivity. We're all here to support you. Please keep us informed, ok?

Courage.


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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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Please get a biopsy as soon as possible. Like some of the other posters mentioned, the biopsy is not a big deal at all. They just take tiny little pieces.
You are not a wimp! It's perfectly natural to be scared. Just take it one step at a time. The first thing to do is to get some answers about what's going on in your mouth. Once you know what you're dealing with you can make a plan and you won't feel so helpless.



Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
msmac #134553 05-25-2011 10:31 AM
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I found a few links for you.

New York State - Health Department Website

Two Links and a Phone Number for Assistance for Uninsured

Direct Quote from the Above Site:
[quote]If you are an uninsured American seeking low-cost or free health coverage options,
please visit http://www.coverageforall.org or call 1 (800) 234-1317.[/quote]

HealthCare.Gov - Public and Private Healthcare Options

Coverage For All - Free or Low Cost Health Coverage Based on the New Healthcare Reform

I hope these may help.

Last edited by Chuck D; 05-25-2011 10:32 AM.
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Please get a biopsy ASAP. I was scared to have one too it was nothing. The Surgeon took very little shaving off the side of my tongue. I never felt a thing or afterwards.

I would go to an Oral Surgeon, not sure where you are in UpState, NY, I was orginally from the Buffalo area they have Roswell Park Cancer Center. About payment, I feel most Dr.s will work with you.

Put your mind at ease and get one it looks like it's not getting any better.

Take care,
Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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Your life is never over no matter what happens to you. You can handle any obstacles that come your way.

Definitely get your problem areas looked at ASAP. This may be completely fixable. It may also not be cancer at all. The sooner your get on it get a biopsy to rule out cancer or identify it is it is and take care of business the better off you will be.

I am so sorry you are feeling frightened and depressed. Totally normal to feel that way though.

Be strong and face this challenge with a calm mind.

Kate


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
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I can only echo the others on the forum. Get the biopsy, and the sooner the better! You can handle whatever happens.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
Magz #134563 05-25-2011 03:07 PM
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Welcome to OCF! I know you are scared but you need to calm down! Take it day by day, or even hour by hour. There are several things that could be going on inside your mouth. It could be thrush or several other things. Make an appointment to get checked and this time dont cancel it.



[quote=Magz]
I am a vocalist and musician, and I get a good deal of my income from singing/busking. If I cannot sing, my life is over. It is the only thing, besides my child, that I get enjoyment from. Music truly is my life and I cannot fathom radiating my vocal chords. That is one reason I suppose that I've been in such heavy denial. I just can't accept this. [/quote]

There are far worse things in life than not being able to enjoy singing!




[quote=Magz]If it was not for my child and the fear of the "lake of fire", I would probably end it right now. I'm that down in the dumps, and I just don't know what to do.

Someone, please just tell me that I am going to be fine and that I am not going to die. Please...
[/quote]

Take things step by step. First a biopsy, then wait a week for the results. You are not going to die! You dont even know what is wrong yet. It could be something very easily cured. It would be a good idea to check out some mental health professionals as well. Talking about "ending it right now" is pretty drastic!

Best wishes!!!

Last edited by ChristineB; 05-25-2011 03:17 PM.

Christine
SCC 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 smile
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