#70065 02-19-2008 10:27 AM | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | I am a year out and my doctor has not mentioned a pet scan. I, being the coward that I am, I am afraid to say anything because I don't want anymore bad news. He's very renowned in this area. I go to him every 2 months still. Should I say something or just let it go for now? REMEMBER. Coward, have to have meds just for cat scan. Is the Pet like the cat scan by the way?
Thanks
Debbie
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
| | | | | Joined: Jun 2007 Posts: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | The PET scan takes longer. They inject you with a glucose solution which has to circulate for 45 mins. before your PET scan. Then you must lay perfectly still for 20-30 mins while they run the scan. So you might want to take an ativan or zanax if you consider yourself a baby. It's not bad---just very boring.
I had a scan two weeks after diagnosis, then another two months after treatment ended. I am 7 months out, and they haven't mentioned another upcoming scan. They have, however, emphasized the need for a yearly chest x-ray.
Scoping the throat and feeling around the oral cavity is considered the best follow-up according to my ENT.
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
| | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | I had 2 PET/CT scans following treatment. The first one after 2 month the second after 6 month. Both were ordered by the RO, the oral surgeon was somewhat surprised that I had a the second one so soon. He too favors a more hands on approach, which IF the lesion is visible is a lot more sensitive than a PET scan.
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I am 18 mos post Tx and I haven't had a Pet nor has one been mentioned. I have had 3 cats but none in the past 10 months.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jan 2007 Posts: 346 | David,
Do you mention them or ask why? How do you feel about not having one? I quess I am in the scared mode. Tomorrow I will be all better until the next time!
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO.
Had 14 hour operation which included reconstruction of jaw.
Reconstruction failed. Some radiation, no chemo.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | David,
I find it odd that you have not had a PET since we go to the same CCC. McCaffrey ordered both a PET and a CT with contrast at Bill's second follow-up (3 months post treatment.) Just curious??
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Jun 2007 Posts: 64 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2007 Posts: 64 | if i can do a pet any one can
i never was scared till i went thru radition.some thing about the table,just had my last pet scan thursday it is not to bad.try to relax
they will put straps across you if you ask i always feel like im falling but that is just mmmmmme. ialso have m.s. so that is why
i get to go for a biospy next thursday.take care you will be fine
Lolita - Stage 1, no node involvement, no distant mets. 6 weeks of radiation plus 6 chemo treatments, one each week.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I guess I'm TOUGH !! LOL I won't see Trotti (my RO) until Aug. I'll ask him then or sooner as we exchange e mails from time to time.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | No it doesn't bother me as I really have trust in Moffitt and more importantly Dr Trotti.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Oh David, I know you trust the Moffitt H&N docs as well as we do and I have mentioned that I really liked Trotti--liked him even better when he assured us that he knew our local RO and that we would be more than OK getting rads here.
I guess we both need to mention that those doctors do a very thorough exam by way of scope and just feeling with their hands--so they use a combination of scans and tactile measurments. Interesting though that there seems to be an individual approach to what scans are ordered. When you do find out, I would be interested in knowing Trotti's answer.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
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