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Joined: Sep 2003
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Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Sep 2003
Posts: 1,244
Sammie
It's normal after major surgery to sleep, well it was for me, I think the body needs to take stock.
The max fax docs in Leicester are all brilliant, maybe thats a bit far to travel? Mail me if I can help more..
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
Joined: Feb 2005
Posts: 2,019
Patient Advocate (old timer, 2000 posts)
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Sammie, yes, go to the UK and get treatment there or at least recommendations about radiation and chemo. fwiw, I am stage II, a smaller tongue tumor than your husbands and no nodes involved and I still got what I consider a reliable and strong rec. to have chemo and radiation after surgery. Another thing I was told is that with a large tongue tumor that is anywhere near the middle of the tongue (sounds like a 6 cm tumor might have to be?) you actually can't be entirely sure about no mets to nodes on the neck unless you have a neck dissection of some sort done on both sides.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Feb 2005
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"Above & Beyond" Member (300+ posts)
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Posts: 663
Brian,

Thanks for the info. I am always wondering if I am ever really getting the straight story.

For example, when Harry was diagnosed, the doctor told him he had an 80% of recovery/cure/ whaterever you want to call it. I wondered about that and I went back and did my own research.

The doctor said that we had to make it through the 1st two years but he failed to mention that it is most likely to recur. That truly pissed me off.

I have not told Harry about the information I have found. I cannot see a reason at this time to give him some other piece of depressing news. But at least I know the reality of the situtaion and I am as prepared as I can be I guess.

I am not sure what size his primary tumor is/was cause I didn't know I should ask. I guess that is my next question when I see them.

Thanks again for the information. :-)

Cindy


Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
Joined: Apr 2005
Posts: 60
Sammie Offline OP
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Joined: Apr 2005
Posts: 60
Hi all,

From what I was told during Richards op (by his surgeon), I understand that the "c" that was on the base of his tongue growing and dying rapidly, he said it was trying to find a good blood supply but had not managed it, the dead cells had started to get infected and there was some pus, everything was "surface" (whatever that means) the right side of the tongue had a maximum invasion of 5mm (just read that from the results I asked for!)
Hope that helps clarify some stuff!
Sammie & Richard


C/G to Husband Richard SCC Op 4/1/2005 T2N0M0,Neck disection, 35% of tongue removed.
Reoccurance 3/2007,Lymph Node same side Positive SCC, Swelled to 2.5 inches. IMRT X35 Cis X3 Completed 33 IMRT Cis x2 carbo X1 MET to lungs post treatment 10/04/2007
Passed peacefully 31st July 2008.
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OCF Founder
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netteq ...at this point it dosen't help you to know what WAS, only what you can do right now. Yes, the first two years are the period when recurrences happen the most frequently, but you can't do much with that info. You will always be looking for this whether you are 2 years out, or 7 years out. It will always be part of your life mentally and in the realm of follow up testing. But the past as a predictor of the future is not a firm basis for your actions. My dad was a pilot in 3 wars. I have a picture of the inside of his cockpit during WW2, and on the panel is a little note stuck there that says " Eternal vigilance, or eternal rest." While a strong statement, it applies to your recalls in the future.


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.
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