My brother has just been diagnosed with squamous cell ca of the tongue. MRI shoes no metastasis. He has been advised by surgeon to have tongue removed and by oncologist to not have surgery but to have chemo. And radiation therapy. What is the current accepted recommendation for this. And does anybody have recommendations for where to have this treated? Thanks for the help.

Welcome to OCF. The best places to get treated are at top rated comprehensive cancer centers (CCC). There will be a team of specialists who are familiar with treating many cases per year instead of a small facility where they may only see one or 2 oral cancer patients a year. A large facility will have more experience and resources available to the patient.

I would suggest he goes to a CCC for a second opinion. As you wrote, each specialist will recommend their specialty as the best way to treat him. This is just another reason for a CCC, a whole team will meet and discuss the patient and decide whats the best way to cure them.

Here is a list of CCCs and also the NCCN treatment protocols.

NCI CCC list

NCCN Guidelines

Do you know which stage? If he�s stage one or two, the best option known is surgery. If he gets clear margins by the patology report, the cure rate will be great.

Hi, Norman. Welcome to OCF! We will help you get through this. Getting a cancer diagnosis, whether it's you or your family, can be devastating. No one quite knows what it's like unless they have had the misfortune of experiencing it. The good news is that OCF has the information you will need and the fabulous people on these forums to share their experience, strength, and hope in the battle against oral cancer.

I had the standard surgical removal of the cancerous tumour with generous margins (partial glossectomy) along with a neck dissection. My nodes were clean, thankfully, so I did not need radiation/chemo. If I had any sign of the cancer in my nodes, they would have proceeded with rads/chemo once I had healed from the surgery. Many people of this forum have had some variation of this treatment. Some need reconstruction of the tongue if a larger portion must be removed, some need part of their jaw bone removed and reconstructed with bone grafts, etc.

The excellent news is that your brother has not had any mets. So, like Christine suggested, get to a CCC ASAP. This stuff moves fast and you want to nip it in the bud to say the least! You've got to strike it full-force and not pull any punches, because given a chance, it will take you down.

Best of luck in getting the best care out there. Please keep us posted and don't hesitate to lean us for support.

With care,
Kerri

The best option isnt always automatically surgery with Stage I or II. There are several variables a course of treatment can depend on including location of the tumor. I was Stage I, my treatment was radiation to shrink the tumors to avoid an invasive surgery.

The NCCN Guidelines has specific detailed info which shows charts and explains the decision process physicians should go by when deciding treatment plans.

Hi Norm,

I had tongue cancer no nodes involved. One of the many Dr.'s I went to wanted to do radiation and another wanted to do surgery. I ended up going to Moffitt Cancer Center in Tampa for their opinion.

I had the surgery and am 3 years out. I'm glad I went to a Cancer Center they know what their doing and the right procedure.

Take care and keep us posted.

Connie

Norman, I'm sorry to hear about your brother. We are going through this with my husband. We got 3 opinions. First, Mayo Clinic, wanted to operate, leaving my husband with a permenant swallowing problem. Second (MD Anderson) and Third (Univeristy of Chicago) both wanted to to chemo, then chemo radiation. This approach appealed to us as it gave my husband the best chance for a good swallowing outcome, plus the induction chemo gives him coverage for any microscopic, unseen metasis. Anyway he goes, I would strongly advice getting at least two opinions, three better...before committing to a treatment plan. Once the train in on the tracks, he needs to commit 100%.

Hi there - it depends on location and tumor size. If it is base of tongue cancer - sounds like it isnt - based on the no mets - (usually base of tongue is HPV related and often found in the nodes first) then Chemo and rads is generally the option to go with - it responds very well to chemo and rads.

If its oral tongue and non HPV related - the standard is surgery, first. Then followed up by rads and chemo if required. if you are worried about swallowing its not the surgery that will be the issue - the rads is what damages your swallowing.
I had a third to half of my tongue removed and was swallowing fine a week or two post surgery. Radiation is what damages your muscles. I was even talking okay, now I have a small lisp depending on my tongue's mood (very sensitive to spice, temperature etc since rads cooked it)

The idea behind the surgery first is Eliminate as much of the cancer and it's known Pathways - the nodes) to stop it In It's tracks, then do chemo and radiation If there is reason for concern that there might be microscopic cancer left. often this is related to whether there's perineural involvement - differentiation etc...

I had 40 nodes removed cancer was found in one and that hadn't popped up on my MRI or ct.

You said tongue? Are we talking whole tongue or a portion of it?

Regardless of what he chooses everyone here is right, medical care is number one...a top ccc is worth the time and expense, get him to one. Hugs! And sorry you have to be here.

Norman,

By now you have gathered that you need to get at least another opinion and by a CCC. Do not let someone take his tongue out before you hear from a CCC where they will assemble a team of experts who will all evaluate him and make their combined recommendation.

Norman - sorry to hear about your brother but I'm glad he has you alongside. The advice you've been given about going to a CCC is perfect. If you told us where in the country he lives I'm sure members will chime in with their personal experiences at various centers.

Please keep us posted.