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#39540 12-12-2005 02:55 PM
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Hello all, Eric here. It's been a while since I've posted anything. Life is incredibly crazy with my job (that I am trying to change) and with being the father of a one-year-old (which is pretty darn exciting).

I'm now more than two years out from my original diagnosis/surgery and about 14 months out from my last treatment. So far, all of the reports from doctors have been good - no evidence of recurrent cancer. I've had one PET and two MRIs since treatment ended (with the most recent one in February), and all were negative for cancer. I've gained a lot of my weight back, probably too much actually. Other than being tired from working too much, I feel pretty good. Sometimes I even go a day or two without thinking about what I've been through, though I think I still have a lot of things to process that I haven't dealt with yet...

Anyways, I'm wondering if I should get another PET scan sometime in the near future. After my treatments ended in September '04, I moved from Arizona back to my hometown in North Carolina. My new doctor at UNC-Chapel Hill doesn't think it's necessary to get another PET and says he can tell just as much from his manual exams and the yearly chest X-ray/blood test as any scan would show. And, he says, if there is a distant mets, then it's probably incurable anyway, so somehow that's supposed to make me feel better.

On the other hand, my old doctor in Arizona, who called me up out of the blue about a month ago because he was thinking about me and wondering how I was doing, advised getting a PET. Because I'm in my mid-30s and now have a daughter, he advises going with the ultra-aggressive approach even now. He was right about me once before, and his nagging feeling about a questionable lymph node may have just saved my life...

Just curious what others who have been down my path before me have done. Is it a wasted expense to get another PET this far out from treatment, especially considering my doc doesn't see or feel anything in my head and neck everytime he sees me? Or is it a good safeguard that might catch something that could be lurking and that his hands, however skilled, might have missed? I'm leaning toward getting a PET scheduled, but just wanted to talk this out a bit with others. I realize it's still a pretty new proceedure and have already been through one false positive with it before. But it also caught something that a doctor didn't notice by hand.

Thanks for listening and sorry for not stopping by here more often. This site has been such a blessing to me and my family as well. Hope all are well.

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.
#39541 12-13-2005 01:31 AM
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Eric,

I am glad to hear you are doing so well. I know all doctors are different, but with my T1,N0 staging I still have blood work, a CT of my head/neck and chest xray annually, and am currently on 3 month checks. I split my checks between my original doc and one here in Florida. I go by what Doc #1 recommends since he has seen it all from the start. Maybe your original physician could call/write the current one and express his concerns? I am lucky to have family in KC and a cheap SWA direct flight every six months! (I can relate to the new home, new job, new life post op blessings and stresses!)

Sincerely,
Lisa


SCC Tongue T1N0M0\Dx 3-10-03
Hemiglossectomy, alloderm graft, modified neck dissectomy 4-14-03
3 Year Survivor!
#39542 12-13-2005 01:58 PM
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Eric - Your new doc sounds like my ENT. My guy feels that manual exams and scoping will tell him if my throat is flaming back up. My MO tends to want the imagery tests. His contention is that they can be compared from one point in time to another to spot changes.

PET has a reputation with some docs for giving false positives for cancer, and CT has the weakness of missing tiny spots. One of the 'hot' new tests is PET/CT - both images combined to get the strengths of each type. Go with the doc you trust. You'll feel better about the info you get, and you won't have to carry around any doubts. Tom


SCC BOT, mets to neck, T4.
From 3/03: 10wks daily multi-drug chemo,
Then daily chemo with twice daily IMRT for 12 weeks - week on, week off. No surgery. New lung primary 12/07. Searching out tx options.
#39543 12-13-2005 04:04 PM
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If any of you have actually seen a PET scan film, it will show your heart as a large black spot. The same will often be the case at the original surgical site. There is more activity in healing or active tissue. While it is true that palpitation and visual examination are the gold standard for follow-up exams, these methods will not rule out metastases to other organs. I had fairly well developed lung tumors that did not clearly present on a standard x-ray, they did on the PET. An experienced radiologist, especially in the case of a CT/PET fusion, should be able to make a pretty reliable call. We all need to keep in mind, the distant metastases are usually our downfall, and the pet works very well for diagnosing them.

#39544 12-14-2005 05:49 AM
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I just recently had one of those new fangled CT/PET scans on Monday. It was one of the craziest things I've ever experienced. Ironically, I was pysched up for it as the doctor told me "We got one of those new PET/CT scanners" so I thought I was getting the latest and greatest in technology. Much to my surprise there was no room for it in the building they walked me outside to the parking lot to a semi trailer. The injection room was no bigger than a porto potty and since they couldn't lay a patient down, they recline a recliner. The entire time I could feel the chair vibrating and shaking me around from the wind outside the trailer and the trailer didn't feel heated so when I wasn't shaking from the vibrating recliner, I might have been shivering from the cold...lol. The entire time I sat there "vibrating" (I mentioned this to the technician who blew my vein the first stick) I couldn't help thinking about how accurate this could be since I was moving around from the wind.

Anyway, I find out on Friday the test results. I'm not so sure about the new fangled machine. It was far more comfortable with the previous set up from the patient perspective.

I had a CT scan about six months ago. Even with the results from that, the radiology department always puts on a disclaimer that they can never rule out that cancer isn't present.

Good luck Eric with your decision on whether to scan or not scan. I usually feel a bit relieved when I get through one and they don't spot anything new.

Jen

#39545 12-14-2005 07:13 AM
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The PET scanner that they used when I had my PET scan was also in a trailer attached via a door (surrounded by a sheet of plastic bit not all that airtight) to the building. I had it in early Septmenber and was very glad it wasn't winter! I didn't have the vibrating recliner experience, though.....


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"
#39546 12-14-2005 11:15 AM
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When I had my last PET scan, as I was leaving work I told one of my co-workers that I was going for a PET scan. He asked me what was wrong with my dog! I couldn't resist, so I told him that my dog ate my cell phone. He believed me! To this day I've not told him otherwise. I believe him to be the most gullible person in this world.

John


SCC base of tongue. Diagnosed as stage IV, Sept. '04. Partial glossectomy, Radical neck dissection left side, 37 Radiation sessions, Chemo x 7 weeks. Finished treatments January '05. Cancer surivor!
#39547 12-14-2005 03:21 PM
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Thanks John, for a good giggle. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#39548 12-15-2005 10:58 AM
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HI Eric,

I had my one year PET today. I'm a year and 9 days out of treatment. Not sure if I can answer your query but I am in Raleigh. Had my treatment at Rex.

I don't think they do another PET after the first year, but I ask my RO next week as I will be seeing him on another matter.

Steve


SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
#39549 12-21-2005 08:10 PM
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Hi Eric

I know it's been awhile since I posted but my company finally quit blocking the site so now I have more time to visit.

I'm almost 3 years out, and Oncologist has moved me to PET/CT every 9 months. But hestill wants pet/CT. Machine at the hospital I go to must be rather old, some of the panels in the tube held on by double sided tape, last scan one of the panels fell in on me, the part was thin plastic so no problem, but I couldn't stop laughing afterward. I'm sure this was a quite expensive GE CT machine, and it's held to gether by double sided tape. Great!

Anyway, after the radiologist gets a sort of history on you, I think they can better interpret the films and tell the healing from simple irritation to the disease, which can all show up about the same.


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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