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#1164 05-15-2003 10:58 AM
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Dan saw his ENT today for his 2 month appt. Looked down his throat etc like normal, then pulled his tongue out and took the mirror/scope whatever and looked at the left side of his tongue, did this three times, used new gauze and kept cleaning his mirror, finally felt back on his tongue with one hand and the other hand on the outside under his jaw.....Dan said it scared the crap out of him. Finally he said "You are fine" Couldn't tell if he saw something, so that is why he looked 3 times and did the feely thing.
Goes back in 2 months.
What was he looking for??
Sherrie


Sherrie wife to Dan, Tonsil cancer survivor, Stage IV diagnosed July/2001
#1165 05-15-2003 12:11 PM
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Not to worry, Sherrie. I saw both my docs yesterday and they both did similiar things, as they always do. Just being careful, I think. I am incredibly pleased that they pay so much attention to me and don't just dismiss me because I bounce in there saying how great I feel. Seriously, do not look for trouble where there is none. Enjoy today, look forward to tomorrow. If there is a problem, you will hear about it soon enough, so just let it come to you, and don't waste any time worrying in advance. Oops! Don't mean to preach. Just know that what your husband experienced is well within the bounds of ordinary and normal.
Joanna

#1166 05-15-2003 01:38 PM
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Sherrie,
I know just how you feel. My husband had stage IV SSC of tonsil, finished treatment 7-00, and each time we go back if they take longer than what we think is normal, or look like they might feel or see something, both our hearts drop. One time the Dr thought he felt something, called back to radiology to re-read the cat scan, then had us wait, yikes! Came back in and said, no, they don't see anything, go back to Mississippi! Needless to say in three months when it was time for our check up we were even more nervous. I guess with time this anxiety we seem to get about two weeks prior to each check up will get better, hopefully!
Julie


Julie
Wife to Kelly
SSC tonsil Stage IV
July 2000
#1167 05-17-2003 07:08 AM
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Julie, Sorry to say it doesn't get any easier as time goes on. However, when they do tell you that everything looks good each time you go for a check-up, you feel like you have been lifted to the top of the world. That is a wonderful feeling.
David

#1168 05-18-2003 05:38 AM
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I have found my experiences to be the same. The slightest hesitation or comment by the Doc and the imagination runs wild. I have found it better to just ask the Doc when ever that happens. It is possible it was simply that his mirror was fogging up. For the Doc it is absolutly nothing, for us it is days of worry. So if something a little unusual happens, Tell them how you feel right away.


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.
#1169 05-18-2003 07:24 AM
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On the subject of check-ups, I'd like to get an idea of how often other people are getting scans done...CT or MRI. My husband had a follow-up appointment with his ENT last week, did the scope, everything looked okay. But then when I asked when he'd be ordering the first post-treatment scan, he said that he won't do any for a year - and then just a lung x-ray or CT. He said that scans aren't cost effective. I know the oncologist would like to see scans, bloodwork more often. I'm a little confused. We don't want to go overboard with tests too often (and the anxiety that could be associated with them), but think there must be a happy medium.

Thanks,
Anita


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
#1170 05-18-2003 07:51 AM
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Hi Anita,
My husband had his neck dissection on July 31, 2001, Radiation/Chemo finished up Oct 2001 and had his first Head scan ordered by his oncologist (against his ENTs wishes) in Dec 2001 His ENT said with it being so soon after surgery alot of that is scar tissue and a follow up scan that shows something will different will just be healing and not new cancer. He had his first Chest scan 5 months after Rad/Chemo in March 2002
then one August 2002 and again Feb of this year.

Good Luck
Sherrie


Sherrie wife to Dan, Tonsil cancer survivor, Stage IV diagnosed July/2001
#1171 05-18-2003 08:25 AM
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Anita, I had quarterly CT scans and blood work drawn for my Oncologist appt for four years straight. Fifth year I finally got down to just a chest xray and blood work drawn. My ENT prefers that I seem every four months for a complete checkup. And if anything goes wrong in between those times I see my Internist. Thankfully I have been fairly healthy! I get so tired of Doc and Dentist appointmets, but still, a small price to pay for a happy life. Sincerely, Donna


SCC first time 1989, with a diagnoses of 'cancer in situ' removed lesion, no other treatments.
SCC recurrence 1997 of tongue and floor of the mouth. Stage III /IV Hemmiglossectomy (removed over 60% of tongue/ floor of the mouth), free flap, modified neck, RAD and Chemo(cisplatin, 5fu) simutainously.
Cancer free 6, yes, six, years!
#1172 05-18-2003 09:38 AM
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Hi Anita,
It will be exactly 60 days tomorrow since my treatment ended. Since that time, I have had an MRI (which the Omcologist ordered), 2 blood tests, a visit with the Oncologist (2 weeks post treatment), a visit with the Head and Neck surgeon, a visit with the Radiation Oncologist and tomorrow with the Oncologist. The Head and Neck surgeon informed me he will be seeing me every 2 months for the next 2 years. No one has "scoped" me yet. The Radiation Oncologist shoved her hand down my throat, got along both sides of my tongue and it hurt like hell. She was unhappy that my thrush was not in control yet in spite of the fact I take 200mg of Diflucan a day and won't release me. I have to see her again in 6 weeks. But at least they're checking. I sure and grateful I have an HMO that covers everything.


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)
#1173 05-18-2003 10:29 AM
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Donna and Gary,
Any idea what they look for in the blood tests? My husband has had a couple of blood tests since treatment, but only because of the pneumonia that he had 2 weeks out from treatment. He is seeing the ENT and radiation oncologist every month.

Thanks,
Anita


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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