So today I met with the ENT to discuss follow up treatment for my PLGA. I already knew what to expect, that it needs more surgery, but I was curious what, if any tests they would run.

First of all, I wasn't thrilled with the ENT. He and his assistant seemed too fascinated with a zit I had on my chin, I mean, really, it's acne! I had to reassure them several times that it appeared overnight and I'm positive it's JUST A ZIT! Not more cancer, seriously. They stared at me like I was a medical oddity and while he held the report in his hand-- the same report the oral surgeon gave me-- he didn't seem to know the specifics of what was going on. He asked me how big the tumor was and when I had the surgery to remove it. I just felt zero confidence. He discussed the surgery and that I would need a skin graft inside my mouth, which could be taken from my arm or they could use alloDerm. I ended up asking if I would need any tests. So he decided that a PET and CT scan were in order.

So I've been crying and freaking out all day, honestly it's not that big of a deal, but alot is going on right now like my dad being admitted to the hospital after his second round of Chemo. But my husband and I decided we would feel alot better with a second opinion (not so much opinion, just someone else to talk to and inspire confidence in us) and maybe just the CT scan and surgery, and I feel uncomfortable with the idea of the alloDerm, would prefer my own skin even if it means another wound. I feel like time is of the essence, but I feel better for cancelling tomorrows tests.

What is everyone else's experience with all this? Am I just overreacting? Am I being foolish to wait another week to get things done? I don't know how to feel besides overwhelmed. I know it could be much worse.

You need to be comfortable with your team of doctors. While not all doctors have the best bedside manner, some really are excellent in spite of themselves. I would suggest a second opinion anyway, regardless of what you thought of the ENT. Not all ENTs are always familiar with treating oral cancer patients. Some ENTs specialize in putting tubes in childrens ears.

Try to be seen at a ccc this is important. Also don't cancel your tests - even of you get a second opinion and change drs those results can be taken with you and will save time as they will have already been done. It is very important you have faith in and trust your drs. Hugs and best of luck.

Do the PET/CT, as Cheryld said. I usually give someone a 2nd chance due to first meetings being awkward, even for doctors, OtherwisecI would have left them all lol. Then on my 2nd visit both may be more comfortable, and have an idea on his or her style, personality. I have a new doctor who doesn't like shaking hands, which was odd to me, but has warmed up. The other thing you can do is go online as see your doct's background, schooling, residency. etc. if affiliated with a hospital, check thier web page.

I have alloderm, from one of my surgeries to protect the carotid artery in my neck, and It's not a big deal for me. Good luck.

Thanks everyone. It was an emotional decision, I was scared, and I have gone online to look at local ENT's backgrounds. The one I just saw was the one the oral surgeon referred to, but is over an hour's drive from home.
I found one that is closer to home & specializes in surgeries of this kind, and I have heard nothing but good about today from my coworkers at the Health Dept, and my husband is in EMS and heard wonderful things about him at the hospital too. So, we are going ahead with the scans asap, but I will try to get in to see this local ENT. Feeling better about this.

Yeah! Let is know how it goes...

Ok, had the PET scan yesterday, all clear although it showed an unrelated, but not serious, problem. Surgery is scheduled the 28th with the first ENT. I saw the second ENT and really felt comfortable with him but he is going to be away for a few weeks and suggested I have the first dr take care of it sooner. So it will be requiring a skin graft and I opted for it to be taken from me, not alloderm.

So my next questions are, can anyone tell me their experiences iwth skin grafts inside the mouth? I'm told I'll be on a liquid diet for 3 weeks. This is going to be just inside my upper lip.

Also, I am having more and more pain in the original spot where the tumor was removed. Is this a concern or just the nerves trying to grow back? (Yes, I'll ask the dr.)

I forgot to add, the second ENT mentioned that the tumor was growing along a nerve and that worries them more and made it more difficult to differentiate.

If there's nerve involvement you should have rads and chemo, and go back to your dr right away if there's still pain. Hopefully it's nothing but check it out.

I think you're doing the right thing. Bluejay. I've had more than a few surgeries that now seem like were "rush jobs" and maybe were blindly agreed to more by my fear than the absolute facts might've called for. I'm about to follow in your footsteps...after 10 years, I have finally decided to have a 2nd opinion. I've always felt that I am part of the treatment team and the final decision is ultimately mine, but I think maybe a change of scenery could do no harm. Try not to "stew" on it for too long, though, as time really is of the essence in just about every OC procedure. Best of luck! Let us know! You're in my prayers.
Gordon

Ps. Graft inside the mouth isn't too bad it should heal quickly if don correctly. I had almost half my tongue replaced with skin from my wrist. So far so good.

Blue Jay, I had slightly more than half of my tongue replaced with a graft of skin, fat and blood vessels from my forearm, and then they grafted that with skin from my thigh to close off the would. I have had no issues with the grafts, and other than getting used to a different feel in the mouth (there are no nerves in the flap), all is good. The scarring is healing nicely as well

Living in Canada, I tell people I was attacked by a bear...you'd be surprised how many people believe that...

BlueJay,
I had the exact same surgery as both Cheryld and Tina....75% of my tongue was replaced with a hunk of tissue,artery, etc from my forearm. That was 2 years ago and I am doing great.
The surgery was a breeze when compared to radiation treatments. You should recovery very nicely from the flap using your own tissue.
As others have said, don't wait too long...most SCCs are quite aggressive.
Best of luck to you.

Thanks everyone, the support means so much.
I do feel much better about it, fortunately polymorphous low grade adenocarcinoma is not considered to be aggressive but the close proximity to the nerve is unsettling, and since it is so rare, the ENT said it could be unpredictable. Glad to hear the skin graft isn't so bad, and on more extensive surgeries at that!
One more week.

Good luck! And fingers cross everything goes great.