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tonsil cancer

roost22
Posts: 4
Joined: Feb 2011

I was just told by ENT that I have SCC of my right tonsil and I need a PET scan but it wiil take 1 week to get in. Is that unusual?

Hondo's picture
Hondo
Posts: 5742
Joined: Apr 2009

It all depends on where you live, in a large city you can get one in a few days, smaller cities may take a week.

Either way you have come to the right place for help and support.

Take care
Hondo

roost22
Posts: 4
Joined: Feb 2011

Thank you Hondo, very scared at this moment, dont know how to feel.

Goalie's picture
Goalie
Posts: 184
Joined: Sep 2010

Actually, if you have to have it, tonsil cancer is probably better than most. I know, until a few months ago I had it. The good thing about the tonsil is that it isn't "in" you the same way as other things are. It hangs from you and the surgery is simple and very self-contained. If they can snip it off and get a clear margin of tissue with no cancer where it hangs from, then you are in great shape. My tonsil was the primary and we did this and recovering from a tonsillectomy was easy.

Unfortunately, the cancer had made the 1-inch jump to a lymph node and this meant I did nine weeks of rads and chemo and all the fun they entail. Nevertheless, despite losing 35 lbs and all, I survived. They did a follow-up PET last month and found no cancer which was great news. And last week they did a neck dissection and popped out the dead cancerous lymph node and all its neighbors and the tests on them all came back negative. Thus, I have no cancer.

What's the message: You can survive this. Take it one step at a time. If the PET says it is nowhere else, just concentrate on the tonsil. If the PET says it has jumped, concentrate on that. Do the treatment. Fight the thing. You can survive. This board will help you. They did me and my wife immensely.

Next week I go back to playing hockey. Doug

rmdgy's picture
rmdgy
Posts: 22
Joined: Feb 2010

I also had to wait a week to have a PET scan. My ENT called me immediately following my scan and told me that my tonsil was "hot" and he had me scheduled for surgery the following morning. That was April 2009. I did the same as most of the members on the discussion board: surgery, chemo, radiation followed by follow-up CT and PET scans. This morning I had a neck CT as part of the monitoring process. All of my previous scans have been negative - NED is the term used by my ENT. I find out next Wednesday the results of this morning's scan. Good luck to you. I wish I had known about this site when I was going through treatments. It will be a rough few months, but it gets better!

Glenn

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

Hi Roost..I'm new here too. Fear is normal reaction and had same questions as you. I found that the time is usually the Facility getting clearance from your insurance co. MRI is expensive so they don't take chances. But a week is kinda normal.
Also, I've found that agressive doctors get things done fast. They take control and everything moves fast. Also..there is a little trick Docs use with insurance called putting STAT on their forms that means move fast...if not well..ins lags along. Keep that in mind for future appt you'll have. And ask lots questions...always
And keep positive...you can beat this.

luv4lacrosse's picture
luv4lacrosse
Posts: 1387
Joined: Jul 2010

Sorry you found your way to our site, but welcome. These folks have carried me through my ordeal. I too had Tonsil CA on the right side. Mine ended up being more invasive once my surgeon got in. A PET scan within one week is not bad. I think once my diagnosis was finalized, I had a PET 3 days later. I go for my first post treatment PET this Monday.

You can beat this, it is OK to feel the need to lean on us.

BEST!!

Mike

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

A week is not too long. I'm in a major metropolitan area and I usually have to wait 3-4 days after the doc orders it. Sorry that you have cancer. This board is a good place for you. Any question is ok to ask. So much experience and support here. Hang in there.

Bob

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

As all the others said, a week is really not too unusual. I also had to wait because the hospital where I was to have the test done didn't have the pet scan, it was one that travelled from hospital to hospital in a tractor trailer.

The wait is the hardest part but get used to it, you will have many more times that you will have to wait in the future. Please don't let this worry you as your doctors need all of the test results to make a proper diagnosis and to determine your treatment plan.

I'm sorry you had to join this forum but I would like to welcome you and let you know that you are among friends who will help you through all of this.

My best,
Glenna

Tanager75
Posts: 87
Joined: Aug 2009

It is different for everyone but from the time it was noticed, diagnosed by the ent, pet scan, staging, consutation with cancer team, mask made, it took about 4 weeks to get my first rad treatment. Looking back I don't believe people could have responded any quicker or better. By the way, I had SCC, Right Tonsil, two lymph nodes and staged as 3 or 4 (doc said staging was not that important because treatment the same for both). No surgery was recommended. A couple months ago my Doctor did say they were using a new protocal that does include surgery. The treatment sucked as I'm sure you have read. I have survived, and like many on this site, keep feeling better. I keep returning to this site, couple times per week, because I keep learning more from others. My last rad was August 2010.

Peace be with you and your family,

mark

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