Thanks to those who moderate & participate.

Just received the "positive result" from a biopsy of my lower left gum. The dental surgeon recommended a local independent ENT doctor who was able to schedule me tomorrow. After some reading on this board & elsewhere, however, I'm thinking a better ENT doctor option is an ENT physician at the local NCI-designated cancer center.

Awaiting return calls from friends who have had experience with the local Massey Cancer Center (Richmond VA).

If you're near Richmond, you're also not THAT far from either Georgetown's Lombardi Comprehensive Cancer Center in DC or the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins in Baltimore (where a number of OCFers, including my husband, have been seen). Both are NCI-designated (though note that NCI designation has to do primarily with research interests, not patient care). Hopkins is also a member of the National Comprehensive Cancer Network, an alliance of 25 leading U.S. cancer centers that together develop the annual state-of-the-art treatment protocols.

Best of luck as you move forward in this process.

I was treated locally at first, but when I ran into some issues I sought additional opinions at some hospitals in Philadelphia. Then I had a recurrence, again sought multiple opinions (which varied greatly) and the final opinion I sought was at Johns Hopkins.

Based on my experience, I would at least get an opinion at Hopkins. It is about a 3 hour drive for me, but well worth it. Plus many of the doctors there are also professors and do research including my ENT, so I feel they are more experienced and up-to-date on treatment protocols than your local doctors.

Wishing you the best!

I would go with a top notch cancer center for any care from here on in. Aside from being on top of their game treatment wise they team treat, so they all work together to offer you the best treatment and best chance of survival. Gum cancer can be very disfiguring and can also be highly aggressive. It's nothing to play with. Often it can move into the jaw, which means an even larger surgery.

Push them to move quickly and most importantly try to be seen at a top notch hospital.

Welcome.. and sorry you have to be here.

Yep go with a CCC

Thanks to each of you for responding. Perhaps, I'm naive &/or in-denial, but the attentiveness of friends & even my Significant Other's boss seems out-of proportion. Is it not too-early to be looking regionally Washington, Baltimore & even Philly when I still have no more clue than a positive biopsy?

Massey Cancer Center's otholaryngology intake has so far been a disappointment. A single scheduler (apparently on vacation over the last two days) has prevented my case from being considered, as yet, by physicians there. I was told that the scheduler cannot be contacted directly to find the disposition of intake cases... I can only wait for a call at the scheduler's discretion.

NO NO NO...

Let me say first off. Oral cancer can be deadly, aggressive, debilitating and disfiguring.

Gum cancer in particular can move quickly and spread into the jaw. Plus since you have gums everywhere in your mouth it can pop up in different places nearby.

I know we all look and say... oh... a small white patch... it's okay... I mean yeah it's cancer but it's not really huge or anything.

I don't want to freak you out... but I do want you to give this DX the weight it deserves.

It can move quickly into your lymphnodes and then if it's aggressive into your lungs or to some other vital location (my friend Liza - it moved into her ribs and spine, she died the day whitney houston did. Another member did everything she could. She'd just had a baby, and was dx'd (very young) she had surgery, rads and chemo. She was doing terrifically. Then they found it in her lungs. Another girl here - she'd had 3 recurrences in 18 months. She was 22 - and had a baby girl. from the surgeries alone she faced massive infections, and radiation and chemo had to be stopped. She passed away two years ago.

There are a lot of factors to consider and because this cancer isn't at the forefront of the media (though it's getting there) we don't give it the consideration we would breast, brain, or lung cancer - when it can be just as deadly or moreso.

You want the absolute best treatment your insurance will get you. And if that's only the local hospital - I would consider going to a top cancer center - even if it will cost you out of your pocket. How much is your life worth?

Now that I have probably horrified you - (sorry) there are also a lot of people here who have done amazingly well post treatment and some who are still fighting, and facing recurrences. Do what you can to fight it.

If this was your child would you not do everything to fight it?
Then do the same for yourself.

Hugs.

Welcome to OCF!

I suggest if possible, going to a major comprehensive cancer center (CCC) and seeking the best medical care you can. Below is a list of CCC's. They are the countries top hospitals to treat cancer and you should get the most up to date treatment available. The CCC facilities all use a team based approach where the specialists get together so everyone is on the same page. If you cant get to a CCC, there is also a list of the top US hospitals. Look for a teaching hospital or university hospital. Find the best medical care you can and also get a second opinion. Remember, if you jump at the first suggestion and its surgery, once its gone you cant put it back.


CCC list

US News Best Hospitals List

Anyone who offers their assistance, tell them that later when you need a hand you will let them know what they can do to help. Take down their name and number and begin your list. Your wife may need some help with things. She will have a tough job handling everything by herself. Being a caregiver isnt easy. But dont worry, we are here to help you both get thru this.

Best wishes!!!

What about VCU?

Hi OarC - welcome to the family, a big group with a lot of knowledge and experience who will help you navigate the minefield you are in.

It looks to me like you have already answered your own question. With all those great CCC's nearby why waste your time with something local where you can't even get a return call from the scheduler. Oral cancer is serious stuff, you can't afford to do treatment wrong the first time and then repair it later, you might not get a second chance. Another hint for you; treatment is no cake walk, it gets down right uncomfortable, so why possibly do it wrong the first time, and then have to repeat it.

Good luck,
Tony