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

davidcpa: Massey is VCU.

OarC: Don't let geography be the primary factor in determining where you go for treatment, especially since the closest NCI-designated facility is being difficult. Some on these boards have traveled thousands of miles for treatment after their initial diagnosis.

Leslie,

Thanks

Amen to everything everyone has said so far. Please treat this as urgently as you would if your hair were on fire! Just do it, and do it NOW!

Thanks, again, for your advice, support & field-tested knowledge.

Finally, I met one of two surgeons assigned at the VCU Massey Cancer Center (Richmond VA), today. After gentle prodding & an endoscopy by the doctor & his student, he said there was no appearance of cancer beyond the gums, though it probably is already eating bone (CT & PET scans will clarify in the future).

He suggests that one surgeon remove the left half of my lower jaw & left neck lymph nodes. Simultaneously, another physician will remove a leg fibia bone for jaw replacement material. Surgery including facial reconstruction should be completed in 10-12 hours with a 90% chance of initial success. Initially, feeding through a peg tube & breathing through a tracheostomy tube should be anticipated along with substantive swelling.

His fellow surgeon is scheduled to meet me in 6 days. Today's ENT & Reconstruction surgeon is also referring me to a Radiation Oncologist in the Cancer Center.

He suggests I get the surgery done within the next few weeks, but noted I might find a Radiation Oncologist (outside the Massey Cancer Center) who would recommend trying radiation before surgery. In his experience, scarring from radiation makes surgery more difficult.

We discussed sources for second opinions including "celebrated (his phrasing)" CCCs.

He's right about the scarring, more so radiation causes tissue damage that can lead to poor healing. It's very hard to operate on someone who's had radiation - it leads to poor tissue perfusion and leave patients open to infection. The surgery he described is very invasive but many have done it. Hugs

The longer it's left, the more treatment you may have to have. xx xx

Of course, there are plenty who have had to have surgery after radiation.
Most do well.
Of course surgeons want to cut. Radiologists want to irradiate. That's why a team based approach with a tumour Board deciding on your treatment is the best option.
Tammy

Initiated a second-opinion review appointment (probably, weeks away) at John Hopkins, today. CT scans are scheduled at the VCU Massey Cancer Center next week. Feel I'm swimming in molasses, but much relieved to have a plan & encouraged by advice, here.

If Hopkins concurs with the Massey Cancer Center staff, I'm ready to roll. My Significant Other of 21 years, tied the knot with me last night-- not the noose knot, the marriage knot... :-)))

Awww! Congrats on your marriage

Sounds like everything is beginning to get worked out. You are heading in the right direction.

Tough decisions but it sounds like the best course of action.