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#54867 05-19-2004 09:32 AM
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Eric,

Just to calm you down a bit more. I also had a "hot" lymph node on my PET scan. They did a sono-guided needle biopsy and it was negative for cancer.

If the MRI is a better test, I wonder why they didn't use it to begin with? Call me cynical, but I think PET generates so much revenue for the owners that it is occasionally overused.

Try to rest as easy as you can.

Lynn


Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
#54868 05-19-2004 09:41 AM
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Great question, Lynn... I believe I will ask my docs this next time we're in touch (which should be soon, since ASAP means now)...


Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
#54869 05-19-2004 01:26 PM
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OK, here's the latest scoop -- I have my MRI scheduled for tomorrow morning at 9 a.m. in Flagstaff (about an hour away from here)... I was feeling OK about things until my ENT talked to my wife... He sounded "very concerned" after reading the PET report...

He hasn't actually seen the scan, however, just read the report... He's worried, I think, that since I'm a young guy that doesn't drink or smoke, that this may be an aggressive form that doesn't respond so well to treatment... How's that for making your day... OK, so now I'm officially freaking out...

Any and all prayers are appreciated... Will keep everyone updated... Thanks for all the support so far... You guys are awesome...

Eric


Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
#54870 05-19-2004 01:32 PM
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Lots of prayers coming your way from Kansas.

Sincerely,
Lisa


Lisa
SCC of Tongue Stage 1 (T1,N0,M0)
partial glossectomy,modified neck dissection 4/14/03
#54871 05-19-2004 01:32 PM
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Eric, I am praying for you and thinking about you...God Bless You!!!!Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#54872 05-19-2004 04:25 PM
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Eric, My cyber hand is streched out for you to grab if you need it. Be thankful your doctor is being very proactive. Take a deep breath and think CALM....


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#54873 05-20-2004 05:45 AM
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Eric,

My prayers are being lifted up for you. I know these are the most difficult days while you wait, but try to do normal things while you wait for the results. I hope the radiologist reads the scan right away and you can get the results before the weekend. I was constantly bugging my doctor for results. I also am praying that you get good news.

Lynn


Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
#54874 05-20-2004 03:13 PM
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Hang in there Eric - it's probably just scar tissue and they want to be sure. Like I said in an earlier post both of my MRI's sucked but still turned out to be nothing.

I'll add you to my prayer list never the less.


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)
#54875 05-20-2004 03:49 PM
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Hello again, folks, Eric here... Well, here's the verdict. The MRI "sucked" as Gary so eloquently put it, so they followed that scan up with a CT/needle biopsy this afternoon (giving me the trifecta for this week -- a PET scan, a CT scan and an MRI).

So I'm now anxiously awaiting those results, which the docs told me I should get tomorrow afternoon. Gary, I hope it's just scar tissue for sure or something else benign!! While "it ain't cancer till they say it's cancer," all signs point to a recurrence from what everyone is saying...

The one bright spot, if you can call it that, is that the node that's showing up "suspcious" falls out of the original field where they did the radiation. That stinks, of course, that they missed this. But it's good news in that it doesn't necessarily mean this tumor is just laughing at radiation. Everything within the IMRT radiation field came up negative...

So basically, unless things come back negative tomorrow (still praying for that!), I'm going to go another round with cancer -- a neck dissection this time (wasn't done originally) and another round of radiation to this new area... yippee :rolleyes:

I'm still holding out hope that this is scar tissue or something like this but realistically....

I will say this. My ENT has been unbelievable. He's been a bulldog for us. He first ordered the early PET scan when I told him my neck was still feeling tender (it was originally scheduled for July). He got my MRI scheduled for today, when all the other powers that be had me pencilled in for next week. He pulled strings to get me the biopsy today rather than next week. And he pulled more strings to get the folks in the lab to get me results (hopefully) before the weekend...

He said he lost sleep over me last night and then actually cried a little bit as he told me he still aims to save my life... I was touched because this is a pretty tough guy. I think I'm really affecting him because we're the same age (early 30s)...

Anyway, so the beat goes on... prayers and warm thoughts continue to be appreciated... I will continue to keep folks posted... Those of you who have been through recurrence stuff, I'd love to hear from you if the final word is positive... I already know a lot of the reality, and it's not good (which is my doc got so choked up)... Throw in some hope as well... Thanks wink

Love to all of you... You don't know how all of you have inspired and blessed me...

Eric


Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
#54876 05-20-2004 04:40 PM
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We need a special OCF pin (or something) for a doc that gets this deep for us. I AM praying, please tell him my prayers include him too.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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