But here I am. The worst thing I could ever imagine was having mouth cancer. And even worse than that is, I did it to myself by bad habits. I am by nature very private yet I need information to arm myself. If anyone is willing to conduct an ongoing private dialog with me it would be appreciated. A longtime member, perhaps? At some point maybe I will feel confident with public discussion but for now I am too afraid to even type the words out at all, let alone publicly.

I am scared. And don't know what to do. I'm alone in life and my dentist told me I have mouth cancer. Could he be wrong? I want to think he is but I keep losing teeth one after the other, it's not from bad hygiene. There are things I am supposed to be doing to deal with it that I don't know how to navigate, for various reasons. An already complicated life just got ten times more complicated.

Is it an acceptable alternative, to not choose treatment? Are there forums more appropriate for that choice, as opposed to this one? I don't want to step on any toes here. Everyone who is undergoing treatment is brave and courageous -- I am too, but there are limits to the types of treatments I can have due to other conditions. I don't want to be a downer but I need honest information about outcomes whichever road I take from here on out.

Been reading here to try to sort out and discover whatever options may offer hope but so far haven't found a situation as unique as mine. But there's a lot of topics so the quest will continue.......

Click on my Name and then click on Send a PM and then give me a contact number or e mail and I will be happy to see if I can help you.

Hi there you can pm me if you want... Press my name and there's an option to message me. That aside, it's your life you choose what you want - no one here will jusdge though we will try to steer you in the right direction. Ideally letting us know the exact details of what kind of mouth cancer you have will help. The reason I am saying this is because there are obviously many different kinds and it may help to have someone here who has had a similar story to yours to talk with. While your dentist may have diagnosed you with oral cancer, I would first off want to know if you've had a biopsy to confirm this. Its not cancer until you get a positive biopsy - with and oral surgeon, or an ENT. Up to that point they can only suspect. Tooth loss can be a sign of many things and I've not heard of it neccessarily associated with oral cancer... Unless perhaps its in your jaw or gums? That's why it would help to know how far you've gone in terms of diagnosis (a definitive yes - via biopsy, and follow up CT PET MRI scan etc...?)

It says you are in the US - chances are if you let us know what state you are from there is likely someone here from there, who can recommend a top notch cancer center which is where you should be treated.

Oral cancer is treatable - expedience is the key - being diagnosed and then seeking treatment quickly helps. Treatment is no picnic, but it is doable and if it's still localized there a good chance of a cure. I wouldn't give up before you know the full extent of your diagnosis because once you get over the initial shock you may decide to fight, but have already waited too long and given it chance to spread. and dying of oral cancer is a horrible way to go. If you're scared because you been diagnosed at a higher stage let me say - there are many people here who've had stage 4 and are still around and stage ones who aren't - it depends on you, your treatment, your body, your habits and the aggressiveness of the cancer. You are not a statistic - your a person, you write your own story.

All of that aside - you say you brought this on yourself. I can only surmise since you're blaming yourself, you're a heavy smoker, a heavy drinker, both, or you've been reading the news and think that you've got HPV and that has caused this.

The in and outs of HPV related oral cancer are tricky. We've had people come through and say they are embarrassed people will think less off them because they've been diagnosed with HPV related cancer (something that can only be determined through a biopsy and tissue testing) let me just say a vary high number of the population has HPV and not all HPV causes cancer, and someone who has had only one partner can easily get HPV. If you smoke or drink, yes it can definitely cause OC. - but I do neither and I had a tumor in my tongue - so there is no way someone can point a finger and say - this caused your cancer. So, no self recrimination, forgive yourself and just vow to do the best you can to help yourself. But if you are a smoker or drinker do stop, it can only help.

Finally welcome... This is a great group no matter what you decide we're here to help. Hugs!

Welcome to OCF! I am sorry you are here but know that since you have found OCF you have found reliable medical info and tons of moral support. Upon initial diagnosis it can be very frightening. My 3rd round of OC, I almost chose the path of 'do nothing'. I felt that if I would just die in the end it was not worth going thru the horrors of a 10+ hour surgery.

I hope you will use this forum as a place to vent and ask questions to get help with your situation. Many of us have been here for years and have seen many unusual circumstances pass thru here. Im sure anyone you would want to reach out to would be able to give you some assistance. The beauty of this forum is that it is completely anonymous so no one would know who you were unless you wanted to tell them.

Best wishes!

Solitaire,
Please don't blame yourself for this. I nevet smoked in my life, was only a social drinker, and was negative for HPV. I was diagnosed with stage IV tongue cancer three years ago, and after surgery, radiation and chemotherapy, I am still here! You didn't say if you have had a biopsy. Remember, it isn't cancer until a biopsy tells you that it is. If it is cancer, please don't ignore it. It won't just go away. Good luck in your new journey. You will meet a fantastic group of people here, and we will be with you every step of the way.

Solitaire - please don't blame yourself. Cancer is cancer, it hits you or it doesn't. I too thought I was dealing with it alone until I found this forum. Like David and Cheryl I'm here to help you in any way I can so please feel free to PM me too.

No matter what, please don't give up. I know I have no knowledge of the specifics of your situation, but there are fantastic doctors and treatments out there and we'll help you find them.

Think of us as your new family.

Thanks all of you for the encouraging words. It takes me a while to read, digest, and formulate replies but will like to try to address each of you, because you all bring up good points worth considering.

Good news. My ticket got cancelled -- i.e., the doctors at Stanford Cancer Center have ruled out the worst case scenario of oral cancer. Due to other medical issues I can't yet have a biopsy but the doctor is looking at it as lichen planus with a plan to follow up every three months and if it progresses to see what we can do about a biopsy.

My fears were so great that it took me months to take the steps necessary to find that out. Those fears were lessened by reading here at this forum. So I want to thank you all for supporting me in getting to the doctor, and for supporting one another. This forum is really a godsend and without it, I would have not gone to see a doctor at all.

So that's good news for me, but I want you all to know that I have read so many posts... I don't know what to say except that I am humbled and stand in awe of all of you. Your bravery gave me enough courage to at least dial the phone and you won't ever know the magnitude of what that means. In simple terms, I don't know what I would have done without you.

I will continue reading from time to time, and I hope you won't mind. Wishing you all the blessings to be found

Sounds good. Glad that you probably won't have to join our "club". Keep us posted, and good luck to you!

All that worrying for zilch. It doesn't pay to worry about anything until it actually occurs.

Solitaire, I too am alone and do everything myself. It isn't a bad type of life.

Hugs! And congrats!

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