Some opinions please.
I am an OC survivor and heard yesterday through my brother-in-law that one of his friends, who I also know but have not yet talked to, has OC. It is on the base of his tongue and there is lymph node involvement. My brother-in-law told me he is going to have the surgery because, "he doesn't want to deal with the chemo and radiation." This didn't seem right to me. Don't they usually follow up these surguries with treatment? I had a similar cancer and had the chemo and rads and no follow up surgery.

My brother-in-law also said it was not HPV, which also didn't sound right. I've known the guy for 20 years and have never known him to be a smoker.

I don't want to say the wrong thing. I know we all tread lightly when we hear something we don't agree with, but does this sound right?

Ray

[quote]we all tread lightly when we hear something we don't agree with[/quote] makes me feel left out

No, getting surgery right off the bat for base of tongue cancer with lymph node involvement does not sound "right". The base of the tongue actually develops from different embryonic tissue than the oral tongue so their treatment is usually different . The majority of oncologists acknowledge that while it may technically feasible to surgically remove some base of tongue cancers, most can and should be treated by radiation and chemotherapy. Surgery, even robotic, is a last resort for BOT because of all the negative consequences on speech and swallowing. Most BOTs are discovered at a later stage than oral tongue tumors so that is a factor
Whatever problems your brother in law's friend fears from chemo & radiation are not half as bad as what he's going to get with BOT surgery. Maybe if he only is Stage I it might not be so bad.
Of course, the tumor could be on the oral part of the tongue
(The tongue has 2 separate anatomical areas, the oral tongue is the part you can "stick out" at somebody and extends backward to the back of the tongue) The treatment for the oral part is exactly the reverse of BOT. Surgery is the first option for those tumors.
The "exception" to surgery for BOT is that often a neck dissection is done after radiation and chemo although with PETscans actually accurate for lymph nodes, they are no longer as commonplace.
It can't hurt to suggest that he get a second opinion or a full briefing on the downsides of BOT surgery or share what is the majority opinion on BOT treatment
Charm.

Hello Ray!

His treatment protocol is completely dependent on staging and involvement really...and the treating facility. Personally I'd get a 2nd, preferably from MDA or another CCC, the best advice out there is to seek the absolute top medical team available, and in TX that's MDA (most of the country actually).

The second opinion is what i'm pushing for through my brother-in-law. I'm hoping he calls me. I've already suggested this group so he can look around.

BOT primary with mets to a node or 2 has a 70% probability of testing positive for HPV but that presentation then does not guarantee HPV involvement.

That presentation would usually not involve surgery to the nodes and would go straight to chemo/rad with surgery a possibility of surgery post Tx if needed.

Hi Ray! Hope you are well. Glad your BIL sought you out and you have pointed his friend in the right direction.

My concern would be where he is being treated. A CCC would be the best place to go. In TX, MDA is the best one to check out.

There are many members who are non HPV and also non smokers. They have no known cause. Your BIL's friend may fall into that category.

Hope he will contact you and check out the forum. Im sure you can give him a hand and I know we can too.

Thanks for the replies. Found out last night that he's grade one, which does not coincide with what i was first told about the lymph node involvment. Surgery is tomorrow, so i'll wait until after.

Tonight i'm going to the local support group meeting and taking a friend who had surgery about a year ago. She had a pretty rough time and lost a lot of teeth and weight. She has not participated in any of the OCF walks or this forum. Hopefully meeting Elizabeth and others who have had a ND will help her get over this. She has told me she is a little apprehensive about going out in public.

Thursday i'm having dinner with someone who is starting treatment next monday for HPV BOT and tonsils with lymph nodes. He's in the medical field and is already familiar with what will be happening and seems to be pretty strong going into this. He also sings in rock bands on the side and is very good.

When it rains it pours.

Wish your BIL's friend would have checked out MDA! Surgeons cut and when its gone it cant be put back. You know all this and too bad he hasnt reached out to you.

Ray, you are doing so much for your community by helping fellow survivors! Glad I was able to meet you while I was in San Antonio last year.

Your friend who doesnt want to go out in public will eventually adjust to her new normal. Being different isnt easy and people stare which can make someone feel so uncomfortable. After a while it gets easier. With you and Elizabeth to help her, she will be just fine

Christine, if we had a like button on this forum i would click it for your post.

What do you mean Geade 1?