I have a question that may spark some debate but I am very interested in the opinion of others. If you look at my signature, I am wondering if you would go with a more conservative doctor or aggresive doctor. It seems to me, some people with the same diagnosis as me, have undergone a neck dissection with the removal of nodes. My doctor discussed not having that done at this time. My SCC was found laterally on my tongue. After speaking with my doctor today he described it as "superficial". Invasion was present: depth <0.1 cm. I would like to hear other opinions. The people who are T1 SCC, and had a neck dissection/nodes removed, was yours more invasive than mine?

Thanks for taking the time to reply.

Yvonne

Different surgeons follow different protocols. there is no standard treatment. If you look at my signature you will see that I had a partial glossectomy and 30 nodes removed. That was suggested by my surgeon and I was more than willing to go along with his reasoning for doing it.

There are many members that would disagree with that treatment option, but I am almost 6 years out and am very comfortable having had the neck dissection.

A debate MAY follow!!!!

HPV- go with Mr Aggressive.

David,

It is HPV negative. I wasn't sure if you were thinking it was HPV +. HPV negative, would you go with aggresive?

Thanks,

Yvonne

Yvonne,

Mine was also T1 SCC. I saw a top doc at Penn (excellent hospital in Philly) went for a 2nd opinion with the top doc at Sloan Kettering (same doc that treated Michael Douglas) and my doc that I actually see at Fox Chase and they all said the same thing. That the cancer should be treated surgially only with a partial glossectomy (4 actually) but it was only cancer once in 2007. All the others were a precaution because I had some white spots..it was always severe dyaplasia.

I think in order for you to feel at peace with your decision, you should at least go for a 2nd opinion. As you can see I had 3 from some very good doctors and that is why I can rest at night.

Yvonne,

I went into surgery knowing that I had one 'involved' lymph node and came out of it with three. The difference not only changed my staging, it also changed my follow up treatment protocol to a more aggressive route - Erbitux added and additional radiation.

I do have numbness on that side, all the way up to my ear, a large scar and some muscle tightness, but I'm still here and doing well. I think that's a pretty good outcome.

- Margaret

Thanks you everyone. I just got off the phone with one of the doctors and had all my questions answered. I am very happy to say, but feel bad for others who are going through much worse, that the tissue showed very superficial (microscopic) amount of SCC - not invading the tissue.

Yvonne,
I was diagnosed in Sept with superficially invasive scc of ventral tongue, 1 mm deep, if that. Very small, not supposed to do anything. It did. I think it depends upon the histology as well. Mine was moderately well differentiated, so not terrible, but apparently some wilder cells got away.

You are probably ok. My doctor at MD Anderson said he had never seen a small tongue lesion such as mine metastasize, and he had seen lots of cases. So that is why he wanted me to go through radiation. The lymph node was also small, but apparently with some microscopic EC extension, so the chemo got added. The surgeon thought he had gotten everything but they are all cautious here.

Don't mean to upset you or muddy the water, but there it is.
Anne

Thanks, Anne. You didn't upset me at all. I'm always happy to hear everyone's story.

Forgive me. Call me crazy but I think aggressive is the way to go. Everyone is an individual. Everyone's body responds differently. And while most doctors are pretty accurate when it comes to making their decisions, they aren't 100 percent. There is always that one case that they think "won't" or "shouldn't" but does... Cancer is cancer. Go after it with both barrels blazing. That way in the end... you don't find yourself saying... "I should have..."

As you can see from my sig. I too have a SCC lesion on my tongue. It is a fair size, stage 2 though no metastacies was shown three weeks ago during my MRI. I am still having a hemiglossectomy R/T size - but also the neck dissction done, and if they tell me I will need radiation I will do that too.

Cancer is not something to mess around with. If the means to fight it is at your disposal, then do whatever you have to to make sure it's gone. Best of luck.

Yvonne

Everybody has different takes on neck dissections. It's not really a debate as many OCF posters are content to have neck dissections that end up showing it didn't need to be done at all. They feel better knowing for sure there was no cancer in those lymph nodes. I am the resident contrarian here on OCF so even though I was Stage IV I chose not to have a neck dissection since I was comfortable that the radiation & chemocare of the lymph nodes involved. My ENT surgeon actually supported my decision although both the RO and MO urged me to get neck dissection. But the thought of having unnecessary surgery with major permanent effects dissuaded me.
When the cancer came back and I was having major salvage surgery, the neck dissection surgery was just a small part of it so I agreed. The pathology reports showed no cancer in the lymph nodes, and just necrotic tissues. So my ENT surgeon and my decision to forego a neck dissection turned out to be correct. Lots of people simply are not comfortable without taking every possible step, whether absolutely medically "necessary". It's important to work with your doctors and do what works for you.
Best wishes
Charm

Yvonne, I had a neck dissection, and chemo and radiation. I don't regret it at all. I did,however, have quite a bit of lymph node involvement. My ENT said that we would "throw the book at" the cancer, and I agreed. But, of course, everybody is different. (I was also HPV negative.)

Zengalib - glad to hear you are doing so well that's terrific. Cancer is scary - and insidious - I would much rather take more with no need than less and miss some - I too am HPV neg. And I agreed with your doctor the best defense is a good offense.
May many more clear scans come your way!

I put HPV (-) which to me means negative. Sorry I should have made that clearer. So I would opt for Mr Aggressive.

Interesting all the different approaches. I tend to think aggressive is best however in my case because I'm stage 1 and a PET scan came back clear, no neck dissection was deemed necessary. I also will not require radiation as I've been told that radiation isn't effective on dysplasia and all the SCC was removed in initial biopsy.

I'm looking forward to reading the pathology report from this weeks partial right lateral gloss with alloderm graft and resection of floor on the right side.

I agree that the different approaches are all very interesting. So far, my docs' approaches have been right on (for me). I am so glad to have this wonderful forum to come to. I wish that I had known about it when I was first diagnosed. My treatments were pretty rough, but hopefully, they did the trick.

For our 1st round with this cancer the recommendation was no chemo/rad as they got clear margins and only one lymph node was involved, said they could tell the cancer had not left the node. Cancer Bd. said odds were in our favor that it was totally gone.

11 months later Emmett started having issues and it took 4 months to get D as a reoccurance. The 4 months of the tumor(s) growning was the problem in my opinion. So bottom line the only thing we would have done differently was to be more aggresive with Drs. when we experienced symthoms of reoccurance. Since we didn't have the RD/Chemo the 1st time we could be more agressive with treatment this round. Then there are well meaning people who tell us if we had the treatment the 1st time it may never have come back. Bottom line is it a crap shot! Just have to make the most educated one you can and then pray for the best.

I am kind of along the same lines with Karen. My doctor never expected mine to come back at all and everything was going good with clear CT's but shortly after the two years mark - it's baaaack. I actually found the spot just having the doctor check on something that was bothering me. They did laser surgery thinking that was it but shortly after laser surgery I found a couple more spots. The interesting thing was the main tumor did not even show up on the PET scan. I think if they had done radiation earlier they would not have gotten it all due to where all the cancer was.