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#141721 10-19-2011 10:24 AM
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missyb Offline OP
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My husband will be starting radiation next week. He had surgery Sept. 6th. The radiation doctor, which is a different city than where the surgery was, has recommended a PET scan. Is it normal this close after surgery? Wouldn't the surgeons/specialists have ordered it if they thought it was necessary? My husband doesn't want to do it at this point. I don't know what to do or say. Any advice would be helpful since we are so new to all of this. Thank you!


Wife, he was diagnosed early 8/11, SCC-floor of mouth. Surgery 9/6/11, removal of cancer, part of tongue, salivary gland and lymphnodes, skin and vessels from arm to reconstruct, graft from leg to repair arm. T3N0. Radiation to start 10/11.
missyb #141724 10-19-2011 10:52 AM
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I should also mention that this doctor wants to do the PET scan to make sure there isn't cancer elsewhere in his body, not to necessarily check for oral cancer. There was no cancer in the lymphnodes.


Wife, he was diagnosed early 8/11, SCC-floor of mouth. Surgery 9/6/11, removal of cancer, part of tongue, salivary gland and lymphnodes, skin and vessels from arm to reconstruct, graft from leg to repair arm. T3N0. Radiation to start 10/11.
missyb #141725 10-19-2011 10:55 AM
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Hmm. I had a PET scan before my surgery, just to make sure the cancer wasn't anywhere else. Then, I had another one when I was three months out of treatment. I am now having CT scans every 6 months. My PET scan prior to surgery was prescribed by my surgeon, and my subsequent CT scans have been prescribed by my oncologists. The PET scan certainly isn't painful, and I didn't have any problem with it.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
missyb #141728 10-19-2011 11:26 AM
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Only a Whole Body PetScan could possibly detect "if there is cancer somewhere else in the body". I have never had a whole body Petscan, just head and neck.
Since you asked for opinions, I'm with your husband on "just say no" but I am very biased against Petscans because of my own terrible experiences with them. I received both false positives (the Petscan said the cancer had come back when it had not) and false negatives (when the cancer finally did come back, the Petscan said it had not). I never had this problem with MRI/CT and that is all I get now.
On the other hand, some Radiation doctors (RO as we abbreviate here)use a Petscan instead of a CT or MRI to map out the radiation field. Your husband will need some type of scan (CT, MRI or Pet) for the RO to properly set the 3D conformal radiation field used in today's modern radiation types(IMRT or IGRT or SRS) if he hasn't already had one.
Hope this helps
Charm

Last edited by Charm2017; 10-19-2011 11:37 AM. 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
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missyb Offline OP
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He has already had a CT scan and an MRI. That is why he is thinking that maybe it isn't necessary right now. His two surgeons and oncologist, who he has seen several times since surgery have never mentioned it. This doctor the other day was the first. Thank you for your response.


Wife, he was diagnosed early 8/11, SCC-floor of mouth. Surgery 9/6/11, removal of cancer, part of tongue, salivary gland and lymphnodes, skin and vessels from arm to reconstruct, graft from leg to repair arm. T3N0. Radiation to start 10/11.
missyb #141733 10-19-2011 01:57 PM
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Missy

I often bounced one doctor's ideas off against my other doctors.
This sounds like an opportune time to simply ask those two surgeons and oncologist what do they think of getting this Petscan.
You can do it via email or phone message as it's a simple enough question. something along the lines of: the radiologist is thinking of a petscan but since you never mentioned it and my husband feels it's overkill, what do you think?
Even though we are experience cancer survivors and caregivers here, the majority of us are NOT doctors. One of the first things I learned in law school 40 years ago was:
It never hurts to ask.
Keep the Faith
Charm

Last edited by Charm2017; 10-19-2011 01:59 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: Aug 2011
Posts: 10
missyb Offline OP
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We do have an appt. this Friday with one of the surgeons. That is definitely top on the list of questions we have for him. I just find it surprising that after my husband has seen 6+ doctors involving his surgery, hospital stay and recovery now is the first time a PET scan has been mentioned.


Wife, he was diagnosed early 8/11, SCC-floor of mouth. Surgery 9/6/11, removal of cancer, part of tongue, salivary gland and lymphnodes, skin and vessels from arm to reconstruct, graft from leg to repair arm. T3N0. Radiation to start 10/11.
missyb #141757 10-20-2011 01:39 AM
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My ex-husband had a scan to check for distant mets. His PET went from his head to his knees...why there? dunno. It's a good stopping point past where the organs reside, I suppose.

The PET showed bilateral lymph node involvement...nothing anywhere else. The RO interpreted the PET results as indicating metastatic cancer. What happened was the PET lit up nodes involved in an infection from which my ex-husband had just recovered. He had an MRI recently and nothing showed up in his nodes. They were never excised and he didn't receive treatment.


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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Since I don't see any mention of a ND, I was wondering how they determined there was no cancer in the lymph nodes. Was that just based on a CT, or MRI?

My CC extensively uses PET/CT scans - all of mine have been full body. I had one prior to my ND surgery and I have had them for all my post TX follow-up scans.

Their logic is they have very good PET/CT scanners so, at least in my case, they prefer to have the PET results along with the CT results.

Currently my CC does not have a PET/MRI scanner. Also, they do not use PET/CT result for planning. They have dedicated CT planning scanners for that.

In my opinion, the PET results might help with the DX and any good CCC will consider it along side other tests and scans (CT, MRI, Ultrasound, biopsy, etc.).


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

DonB #143689 12-06-2011 10:04 PM
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missyb Offline OP
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I'm not sure what ND means. They removed lymphnodes during surgery and did biopsies on a random 44 of them. No evidence of any cancer. The surgeon wants to wait til after he completes radiation since it won't change this course of treatment. Sorry it took me so long to respond.


Wife, he was diagnosed early 8/11, SCC-floor of mouth. Surgery 9/6/11, removal of cancer, part of tongue, salivary gland and lymphnodes, skin and vessels from arm to reconstruct, graft from leg to repair arm. T3N0. Radiation to start 10/11.
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