Had a biopsy last week (My 13th since 1990!) and results were supposed to be in yesterday -- Called nurses several times but got no return calls, which is not a good sign. Had to take daughter to airport today, so I decided to drop in to office since I was on that side of Puget Sound. Told that although nurse was in, I would have to wait for nurse practitioner, again not a good sign (Nurses can apparently give you good news or tell you results hadn't come in, but can't give you bad news).

While I was there, Dr Haakenslash called in from somewhere to speak to me -- He had gotten results evening before and SCC was found in the high BOT, right below where it changes to mobile tongue (What I expected to hear when I went in for biopsy) -- He looked again at CT done two months earlier, but only a very faint indication, not noted by him or Radiology Doc -- He wanted an MRI, so since I was there, we got it done.

He will look at MRI and develop plan, likely submitting to Tumor Board tomorrow -- It will be surgery, with a tissue graft to cover the gaps as Chemo will only slow it down and I have already had lifetime dose of radiation.

Dunno when, or where the graft donor site will be or even whether he will go in from mouth or hack through side of throat, with his team of Cutthroats.

I'm actually relieved that it is cancer because otherwise we would all be wondering what was causing the sensitivity and ear pain (Classic symptoms, sore not healing and ear pain). Strangely, I'm starting to get used to all this.

Depending on when, I want my non-UW gastro-Doc to put in a good PEG, not that feeble, clogging one that I had last!

Oh Pete, sorry you have more to go thru ... Sometimes I wonder when does it all end .. Ya follow all the rules, go thru all of the treatments and still it comes rearing its ugly head again and again ...

Who is your doc at UW? That is where I go as well.

Well, I hope you can enjoy your holiday before setting in to motion against this latest finding. I know you will do well and we will be here sending up prayers for your fast recovery.

Pete-Best of luck to you. You've been through it before and have come out the other end again. Stay strong-we'll all be here for you.

Pete,

There have been a few recently that have opted for additional rad after they "had a lifetime of radiation earlier". I don't know what the deciding factors are, like area treated before and now, time between rad Tx's, etc but I don't think we can just brush off additional rad tx's like we we told in the past. Have you asked about this?

Pete,

So sorry that you have yet another battle to face.

You CAN get a PEG that works and and doesn't clog. Bill had such good luck with his...never had a clog or displacement issue and got over the soreness within about 4 days. I am grateful for a wonderful surgeon..I think that made all the difference with his PEG and port.

We cleaned around it every day with gauze and kept it in place with a soft ace bandage and never had infection and soreness.

Good luck to you and ask around for a good general surgeon to place this for you...makes a difference.

Deb

Pete not you too. You hang in there and give it the ole 1-2 punch...You can overcome this and beat it just to say you did it!!! I can truly immagine how you are thinking concerning your peg tube..the past trouble you have had...but this is a new start this time will be different and you can do it...Take care pete and hang in!!!

(((((((((((((((hugs Pete)))))))))))))))))))))))))

Rita, it's Dr Neal Futran, chair of the department at UWMC -- He's good!

http://uwnews.org/uweek/uweekarticle.asp?articleID=42071

David, the radiation came up the last time around with this and I have indeed had my lifetime limit -- I had a "shotgun" of XRT in 2005-6 to kill microscopic cells, so these have apparently grown since then. Last time, Doc said if we radiated again, my tongue would be a useless, brown, shriveled thing... More radiation is possible if very targeted radiation was used the first time around and not in the new area.

Deb, my first PEG, installed by a Gastro-Doc, worked fine -- It was the second PEG, installed by a Radiologist at UWMC, that was so poor.

The 'rules' are just guidelines and do not come with a certificate of guaranty!

There are a number of radiation options so don't rule that out. I had radiation 2nd time, and Jim has had the radiation seed implants which might be an option. Your donor site for the graft will likely be the front of your thigh. Mine healed very well and a year post graft it is a discoloured that people would look at and wonder what happened - but no horrid winding road scars (ya gotta look good in shorts eh?)

I know what you mean about having it identified. There is a sense of "relief" that it has been caught - obviously early - and that you weren't just going crazy. There is something about identifying the problem and taking action that is calming.

You will do great through this. As Tom R. will tell you - lots of new options and the other day someone posted something about a "cyberknife". I don't know what that is, but I know when I was diagnosed last time the lazer doctor was in on the consultation as lazer surgery was being considered.

Sounds like things are moving at a good speed and catching it early is so important. We're here for you.

Donna

Hi Pete,
What devastating news..what a bummer !!!!
So sorry to hear that you have another SCC.
You mention maybe a tissue graft which is planned for me on the section between tongue and flap on the 29th January.
The donor site will be from the inside of my cheek (mouth :-) on the other side.
Will be in touch when I am not at work as I am at the moment.
Gabriele

Pete:

Im very sorry to hear your results werent good. On the positive note, you have beat it before and can do it again. This time aroudn you know what to expect and how your body will react to treatment. Ive done it twice myself, so know its never easy. Hoping you have an easy time of it.