I 'm so happy for you!!! Good luck with everything - remember to move quickly!!! Though... Take care!

Okay, I got a call today from my surgeon @ Hopkins. Those old knuckleheads at Prince William Hospital misdiagnosed the slides. I have mucoepidermoid cancer (MEC) at the base of my tongue. My surgeon is giving me a very positive outlook, even better than before. Since it is located on soft tissue, resecting it should not be a problem, as opposed to other locations that could have far worse long term side effects.

I'm going to have TORS on August 17th to resect the remaining tumor, and a bilateral ND on Sept 2nd to check for spread.

Why aren't they doing both surgeries at he same time? Good luck, and great the diagnosis was sorted out!!

They're staging them because the room with the Da Vinci robot is very hard to schedule. It's very popular, and the only other option would have been to wait even longer to get a 6 hr window instead of a 2 hr window. I want this out ASAP, so I'm okay with staging them.

Normally, if this was tonsillar, they would stage it anyways, because doing them together results in higher risks of fistula, but given that my lesion is at BOT, he said I wouldn't be at risk of one.

Welcome to the MEC club. You will find there are few of us here. I was also found stage 1 so I was lucky as well. Of course my Mini Schnauzer kept sniffing my lower lip where the cancer was which probably saved me. I finished Radiation 16 months ago and every day seems like light years from the entire event.

Seda that's awesome!!! And Warren... I get it- that was the first thing I asked when i found out the primary treatment for this cancer was surgery - how soon can we get it out!!!? I wanted it gone - even told the dr - if you have any cancellations I'm there!!! (he said no one cancels my surgery - yes he's a bit full of himself - but he's earned it - and I told him I know but if someone catches. Cold etc... He just smiled and booked me within 3 weeks!) Good luck!

So did your HPV tests results ever come back? I am surprised they are doing surgery rather that rad and chemo....I have never heard of TORS...so hopefully it doesn't give the complications of normal surgery to remove.

Glad they give you the good news. I think you already had your surgery...but hope you talked to doc about surgical removal of that area of your tongue and the lifelong complications it would cause vs the complications of rad/chemo.

Hope it went well for you!

[quote=WarrenW]Hello all. My name is Warren, and as of today, I am a cancer patient I'm 35, don't smoke/use tobacco, and don't drink.[/quote]

Hi Warren, first, you found this site very early on. Thats first good news. I am 34, 6 month kid when diagonized on June 4th/2011. Me, too, don't smoke/use tobabbo/drink. Pretty much the same as you. I am nearing my treatment. Surgery done, last chemo done, 3 more radiations to go.

[quote=WarrenW]
Today I went in for my followup, and he gave me the bad news. His initial diagnosis is that I have SCC, base of tongue, T1N0M0, stage 1. HPV test not back yet. How quickly life changes.[/quote]
Mine was a visible ulcer on right side of tongue reaching the base. 1.5 cm x 1.5 cm. After surgery, the lymph nodes no signs of cancer. So they kind of classified it as T1N0M0.

[quote=WarrenW]
I'm frightened after reading some stories, and so is my wife. We have a child that is just 8 weeks old. I found out about the cyst the same week that he was born. I'm happy to have found this forum though. I'm sure I'll be leaning on it for support.[/quote]
The frightening part is essentially not for SELF, but mainly for the family, atleast in my case. Think of it as you are one more living creature on this earth who is subject to malfunctioning, but unfortunately humans are born super smart to bear all kinds of emotions. If you can control your emotions, that is the best way of looking forward.

Yes, to be frank and honest, the trauma of treatment keeps becoming pretty severe as the treatment progresses. You will gradually learn to cope with it. I am still not in a position to give any feedback on how it will be post all treatments, say 6 months down the line.

But please do remember, life is a pleasant journey with roadblocks at places.

Thanks
Venkat, India

Alright, here's an update. I know, I should really start a new thread...

I had the TORS operation on 8/17 at the Johns Hopkins Bayview campus, and it went well. They took more than they needed to. It was a butterfly shape that he ended up taking from the base of my tongue. It wasn't that deep though, since he didn't have to use clips, only cauterization. In the end, it turns out that only the right side had any sign of cancer. The pathology report showed the remaining tumor to be only .5cm. Clear margins were obtained, and there was no perineural invasion in the resected pieces.

I had the NG tube for less than 24 hours. I was fully talking, and able to sip water, so they took the tube out. Thank goodness, because it was pretty uncomfortable. I left the hospital after just a single night. Unfortunately, I discovered on the way home that the antibiotic they prescribed, clindomycin, gave me 30 minute hiccup sessions. He told me to stop, and didn't have me take any other AB. Well, unfortunately by the 3rd day post-op, I had pneumonia. I checked into Prince William hospital back near our home in Manassas. I had to spend 2 nights there recovering from pneumonia while they IV pumped me full of azithromycin and Zosyn.

They released me and had me on augmentin and azithromycin (gen for Zithromax/Zmax), which ruined my stomach and intestines. I lost 14 lbs in less than 2 weeks. The augmentin and oxycodone really took a toll on me, not to mention around day 7 things got real painful. The scab started to break off, and it basically feels like a tonsillectomy.

To make matters worse, I figured out the oxycodone lengthens my minimal focal distance, which messes with my eyeglass Rx, and ability to see up close without glasses.

Things started to get a lot better a few days ago though. I'm eating solid foods now, and I'm pretty ravenous. I think that's because my sense of taste isn't quite back yet. I get a few bites of near full flavor, and then it's gone. It's like my taste buds get fatigued! I'm not worried though. After the lingual tonsillectomy in June, this happened as well, and I regained full taste.

Never had any problems swallowing (other than the pain). No speech issues. Today, I didn't even take any pain killers. I'm at the point of just taking 500mg of Tylenol as needed.

I'm in for a bilateral ND on friday. Selective on both sides. Same surgeon, but this time, we'll be at the main Hopkins campus.

Warren, selective neck dissection will not be too much of a problem. Once operated, you may have stiffness of neck and shoulder muscles but bit of exercise and physiotherapy session will help you get back in shape.

Since it was a small tumor and has been caught early, I am sure that the nodes will be negative and hopefully you will be T1N0M0 like Venkat.

All the best for your surgery and take good care.