Has anyone else who is a T1N0M0 (stage 1 and nothing in nodes and no mastesis) had a reoccurance of SCC tongue cancer?

Only one of my three doctors is recommending radiation.(Already had surgery with clear margins.) Two are on the fence and leaving the decision to me. I want to be as aggressive as possible and need to make a decision soon.

I know some of you feel the side effects are nothing compared to the reduction in reoccurance. However, radiation is not a guarantee that it won't come back and since you can only have radiation once in the head and neck area (can have more if elsewhere in your body) then I'm wondering if I should wait and then use radiation/chemo if it returns.

So, I'm wondering if anyone else was a stage 1 with nothing elsewhere and the cancer came back.

Yes reoccurance does happen with "stage 1". Your decision is a tough one though. If the tumor was very small and they obtained very wide clear margins then the risk should be lower.

Was your tumor tested for HPV? Knowing that might also help with the decision.

In the end, you don't want this to come back.

I doubt his tumor would test positive for the HPV types screened today since most, if not all, HPV+ SCC originate in the Oropharynx region.

Also from the recent cases I have observed here involving younger non smoking patients with HPV- tongue primary tumors they appear to be as aggressive as their tobacco related cousins so my point is listen hard to all the doctors' treatment suggestions and I would seek as many opinions as I could.

There are people here that were HPV- and had small enough Primaries that they were offered surgery only and they have not had a recurrence. Is that ever guaranteed, of course not. Is it guaranteed that if you have radiation it won't come back, of course not. The question is then how much more of a chance would you have of not having a recurrence if you couple radiation with the surgery in your particular case? Then you must weight that against the side effects of radiation, both short and long term that you may or may not have. Tough decision so that's why I would just listen to as many "experts" as I could before I made up my mind.

Good luck.

Hi, and welcome to OCF. I was diagnosed with stage 1 no nodes and no spreading. I have had 4 surgeries.

I wonder who is treating you. I ask because I have been treated at Penn and Fox Chase and they never thought for a second that I needed radiation. What is their reason for wanting to do it? Where are you being treated?

My oncologist at the James Cancer Center at Ohio State said I didn't need them either. My margins were 1.5 and My oncologist locally argued with him that I did need it. I ended up with 2 more surgeries at Ohio State and came home to get my teeth all removed, rads and chemo and the rad seed implants in my tongue,.they don't always know what is best as I learned fast. Lost 70 lbs along with all the treatments and have only gotten back 10 lb back. But I had to have an anneurysm repair that could only be half finished . I am waiting to find out when we do the lower end of it. THat Dr wanted to let them take care of the Cancer then take his turn. LOL I am cancer free right now. I have to get my esophagus scope because I have Barrets Esophagus too. THat is precancerous and can appear at any time..Already had surgery on it in 1996. I live an exciting life LOL

I agree with the above, if the margins are clean AND wide enough. Jims margins, if I recall correctly (Jim pipe up if not) were just 1.5 mm or 0.15cm. This is really small. Generally you want >5mm to 10mm.

M

Hi Partovis - My husband had 4 recurrences. His SCCs were all very small, caught early, stage 1 or in situ, well differentiated, clean margins, neck disection found no cancer in lymph nodes, etc. so it was decided against radiation/chemo in all instances. His last check-up (including 2 biopsies) was good, so no real problems since he had laser clean-up of the lichenoids, lichen planus, leukoplakia in his mouth. He had no cancers on his tongue, no mets, and no HPV. He did lose 3 teeth in 2 different surgeries and his jaw bone was shaved - no cancer there either. In conclusion, he never had radiation/chemo. This is just OUR experience - your doctors are the ones who know your situation. Best of everything to you.

Hi, I'm being treated at Jefferson University - Kimmel Cancer Center branch. They are "leaning" towards radiation because on one side, they only cleared a .3 cm margin. The other two margins were fine with .6cm and 1 cm. The tumor is still staged at 1 but measured 1.4 x .4 x .5 cm.

The .3 cm margin on one side combined with the fact it crossed slightly to my right side of the tongue...they did a left neck dissection removing 37 nodes and all clean but didn't check the right side. PET scan showed all clear.

This has to be by far the toughest decision of my life. I'm leaning towards not doing the radiation because it was well differentiated so it was slow growing. I was just late getting to the doctor because I never suspected I had cancer. Hence the need for awareness :-)

My oncologist is "leaning" towards radiaton with one radiologist while another radiologist thinks we should do it.

My thinking is that if I can only have radiation once in the mouth area then why wouldn't I save that card and play it if it reoccurs since radiation still doesn't guarantee no reoccurance? Seems like I would use that card when I knew I absolutely had too - kind of like holding an Ace for all of you poker players :-). I realize having it now does help offset the chance of reoccurance but the side effects seem to tell me to wait until absolutely necessary.

Wish I had a crystal ball...

We all wish we had the crystal ball but you are being proactive and that is the better approach to take so listen and learn and you will make a more informed decision and that's all we can do.

I was stage 1 in 2 different spots at the same time. First spot was in my left cheek, a few weeks later another sore started behind my top left molar. No mets or nodes at all. I had chemo and radiation to avoid a big surgery. Ten months later it came back in my cheek. That was a year ago, now Im doing great.

Best of luck to you. Glad to see you are getting a few opinions.