| Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | I haven't been here for a while, but in going over some of the forums, it felt like I was "coming home" again! My son is one of the "obstinate" ones in that after his treatment ended he never wanted to go back for check-ups. Things improved in many ways for him, after being out of work with no health insurance, divorce proceedings, big bills, he now has a great job, health insurance and a wonderful girlfriend. But he is still obstinate. Five months ago he had pneumonia, with pleurisy and doctor said that after the pneumonia was over, he wanted him to get a CT scan to make sure there was no cancer. I couldn't talk him into it. And now, he finally agreed to go and the doctor is setting up an appointment for him because of a "small spot" on his lung, and will call on Tuesday to tell him when. (I think my son's girlfriend may have done some convincing, bless her!) I'm back to stressed out worrying and wondering now, whether there could be a specific reason why a CT scan is recommended rather than a PET scan? Since he had very aggressive tx for the cancer, is it something to be expected for the cancer to reappear someplace else, like the lung?
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Jun 2010 Posts: 111 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2010 Posts: 111 | The CT scan can detect action in/on the lungs. The pet scan is more of a full body scan. Most of the time oral cancer, when it spreads, is likely to go to the lungs so perhaps thats why they are recommending it. Personally I would go with both
my mom, age 59.
12/08 surgery & 33x rad 4/09 recurrence 5/09 surgery & 35x rad 12/09 recurrence 1/10 surgery. peg tube, trach, fibula free flap 6/10 recurrence. double chemo treatments. 8/10/10 finally at peace in heaven | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | PET scans simply measure sugar intake and give many false positives for cancer with an exceptionally high error rate for tongue cancer. CT scans are fine for initial identification of cancer and in fact it was a CT scan that first identified my base of tongue cancer. CT scans are so reliable that even if a CCC orders a PET scan, they almost always combine it with a CT scan. I know from personal experience just how horrible it is when a PET scan goes wrong and indicates Cancer when it's just sugar intake from healing tissues. Perhaps your son's doctors have had similar experiences so are being cautious. Charm
Last edited by Charm2017; 07-03-2010 04:37 PM. Reason: typos
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Its nice to hear your son has made such a great recovery from OC. But I am sorry to hear he is being obstinate. Cancer is a scary thing and oral cancer's treatments are horrendous. Most of us want to forget the whole ordeal ever happened.
It is common for an oral cancer patient to have mets to the lungs. I do not know the stats. Sadly, Ive seen it on here many times.
Personally I prefer the CT scans for exactly what Charm mentioned, the false positives of the PET.
Another reason CT comes before the PET is cost. From what I was told a couple years ago when the hospital wanted me to sign a form saying if my insurance company doesnt pay for the PET then I will. I think the quote was about $1400. I refused to sign the form, when the appointment was made for me this form was never mentioned. The office said without the form, they wouldnt do the PET. In the end, I had the PET and the form was not signed.
Glad he is being checked out. Best wishes for good results. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | My doctors have stayed with the CT scans the whole way. I never had a PET.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Sep 2009 Posts: 148 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2009 Posts: 148 Likes: 1 | This was very helpful CT vs Pet scan. I always wondered why I never had a Pet scan & felt a little left out. Now I know I have nothing to feel bad about!
BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"
*** Admin update --- Dianne has passed away on August 25, 2015 ***
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Thanks so much for all the great and helpful replies. It's so comforting to be reminded how much people care. We had 4th July celebration at my house and it was great seeing what good friends my son has. And it kept me busy, too so that was good. I'm trying to concentrate on a positive outcome with the CT scan but if the cancer has mets to the lungs, I think my son is in better shape to handle it than he was when he had the tongue cancer. I'm going online, too, to see what I can find out about lung cancer.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Time to exhale! Just found out that the "spot" on my son's lung was scar tissue (from recent pneumonia experience) and he doesn't have to go back to the Dr until September to get an Xray. The CT Scan was on last Thursday and now its Tuesday. Five days of extreme anxiety and a very large part of what kept me going were the great people here on OCS. Thank you soooooooooooooooo much!
Last edited by Anne-Marie; 07-13-2010 01:24 PM. Reason: typo
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Apr 2010 Posts: 201 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2010 Posts: 201 | Woohoo!! Great news. So glad to hear.
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads 1/10/2011 Clear PET!!!
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Anne-Marie, congrats on the great news. So happy your sons test turned out to be only scar tissue. Thanks for checking back in with the good news. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | |
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