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#43582 07-13-2004 07:39 AM
Joined: Apr 2004
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sbk Offline OP
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Hello all,

Boy has it been a busy last two and a half weeks since John completed treatment. He still feels lousy, totally exhausted with times of sharp pain in his tounge.

At the oncologist last week, she looked at his GTube Site and wanted the ENT to look at it to be sure it was "recurrence or spread" She told us taht when the GTube was placed it could have passed by the tonsil and brought cells that seeded the GTube site.

Has anyone heard of this? Has it happened to anyone? What treatment options happen?

I didn't ask the oncologist becasue I wasn't sure that John wanted to think about any of these issues and honestly, I didn't wnat to either...I must say it sacared us a bit, but we keep saying oh its jsut granulation tissue...nothing to worry about...

Any thought would be appriciated...

Thank you all and lots of love,
Sara


Wife of John, 40yo, SCC R Tonsil (3/10/04), s/p resection and rad neck, forarm falp, taxolx3 pre rad, rad (30 txmnts) & taxol/carbo. Now he is 49 and doing well!!!
#43583 07-13-2004 08:11 AM
Joined: Nov 2002
Posts: 3,552
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Honestly it's the first time I have ever heard of anything like that happening. Did they do a biopsy to confirm that it is, in fact, SCC?


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#43584 07-13-2004 08:22 AM
Joined: Sep 2003
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Sara
I understand that you donot want to worry John, can you phone someone in the oncologists office and try and get some more information, you'll go crazy if you don't clear this in your own mind.
Sunshine... love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
#43585 07-13-2004 10:21 AM
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OCF Founder
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I have talked with numerous doctors and done a variety of medical database searches.... this has never been mentioned and no doctor that I have talked with has ever heard of it happening. It is most likely an infection around the opening that needs to be treated. If everything that roughly went past the tumor site was capable of doing this, then how would people eat in their early (undiscovered/diagnosed) stages of this without getting esophageal or stomach cancers? I am only giving you an educated opinion, and I am not a doctor, but I would look at infection and take SCC out of the equation and out of the list of things you already have to worry about. Infections around PEGs are commonplace.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#43586 07-13-2004 10:31 AM
Joined: Apr 2004
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sbk Offline OP
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Thank you all so much...you have been very very helpful...Will follow your advice! Have a great eve!! Best, Sara


Wife of John, 40yo, SCC R Tonsil (3/10/04), s/p resection and rad neck, forarm falp, taxolx3 pre rad, rad (30 txmnts) & taxol/carbo. Now he is 49 and doing well!!!
#43587 07-13-2004 02:02 PM
Joined: Aug 2003
Posts: 1,627
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I hope this won't sound to harsh or opinionated, but I think I would also, in your shoes, find myself a new doctor!
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.

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