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Stage I Radiation? #26481
06-28-2004 01:44 AM
06-28-2004 01:44 AM
Joined: Jun 2004
Posts: 85
Atlanta, GA
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David Rex Offline OP
Senior Member (75+ posts)
David Rex  Offline OP
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Joined: Jun 2004
Posts: 85
Atlanta, GA
I have just completed my second partial glossectomy within 6 months (same area). Both were stage I with clean margins. Preop CT scans were clear of additional abnormal areas with the second one not even showing the soon to be excised area as abnormal. Surgeon, after presentation to his group, recommends radiation. Without a clear "target" I told him I would be looking for a second opinion.

Suddenly he says, "How about a PET scan?" What I can't understand is:
1. Why this diagnostic tool is not used more frequently.
2. Why I didn't have it after the second biopsy.
3. If it doesn't show additional cancer areas, why radiation would even be recommended.
4. What other questions I should be asking.

Please help with any info


T1N0M0 Partial Glossectomy 2/04, Recurrance w/ another P.G. 5/04. IMRTx33 7/04-9/04. T2N2M0 recurrance in throat, 11/04.
2nd tumor 1/06/05, Chemo 1/11-05 Died 02-16-05 Wife: Brenda
Re: Stage I Radiation? #26482
06-28-2004 02:05 AM
06-28-2004 02:05 AM
Joined: Dec 2003
Posts: 2,606
Atlanta
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Uptown Offline
Patient Advocate (old timer, 2000 posts)
Uptown  Offline
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Joined: Dec 2003
Posts: 2,606
Atlanta
David,

I am not sure why the PET scan wasn't used the first time. It is typically used to identify all cancer sites in the body, even though it may not identify micromets. It is also a very expensive test and insurance companies balk at the cost if overused. Radiation is used to kill all the cancer cells in the area even if they have not grown enough to be detected by the PET scan.

Seek out a second opinion. Not that it sounds like your medical team has given you bad advice, but rather for peace of mind. Seek out somewhere with a lot of oral cancer expertise (i.e. Comprehensive Cancer Center) and learn as much as you can before the next appointment. There is a lot of information on this website that could fill in some of the gaps you have. Be dilligent but do it soon so you can determine the best course of action for you.

Ed


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Re: Stage I Radiation? #26483
06-28-2004 04:37 AM
06-28-2004 04:37 AM
Joined: Apr 2004
Posts: 837
Newton, MA
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Cathy G Offline
"Above & Beyond" Member (300+ posts)
Cathy G  Offline
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Joined: Apr 2004
Posts: 837
Newton, MA
Davi,

I also had clean margins and no evidence of any spread to surrounding nodes after a partial glossectomy and neck dissection. The head and neck team at the surgical center that was treating me felt strongly that I needed to go ahead with radiation, and I believe it was at least somewhat related to the fact that the tumor was poorly differentiated, which can indicate that the tumor cells tend to move aggressively. As Ed mentioned, some of these cells may not be detectable by a scan.

I agree with Ed that it may make sense to get a second opinion from a different team, although they may come to the same conclusion as the first.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
Re: Stage I Radiation? #26484
06-28-2004 08:05 AM
06-28-2004 08:05 AM
Joined: Mar 2002
Posts: 234
Wilmington, Delaware
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youngerag Offline
Platinum Member (200+ posts)
youngerag  Offline
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Joined: Mar 2002
Posts: 234
Wilmington, Delaware
Davi, I was diagnosed with Stage II/III on the floor of my mouth right side and left side of the tongue. I had one third of my tongue removed, partial jaw removal, floor of mouth rebuilt from chest tissue and radical neck dissection both sides. I had clean margins in both areas and tested negative for all lymph nodes. I did not have radiation or chemo. My entire team agreed on my treatment and that was four years ago and still cancer free.

I too would suggest another opinion. You need to have complete trust in your cancer team and their recommendation for treatment. I can't comment on a PET as I have never had one.

Good luck and take care.

Anne.


Anne G.Younger
Life has never been better.
Re: Stage I Radiation? #26485
06-28-2004 08:19 AM
06-28-2004 08:19 AM
Joined: Feb 2004
Posts: 162
San Marcos, TX
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Brett Offline
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Brett  Offline
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Joined: Feb 2004
Posts: 162
San Marcos, TX
My initial diagnosis was occult primary -- which means they couldn't find my primary tumor. This was after being scoped several times and after an MRI. It was on the PET scan that they found my 2cm primary tumor at the base of my tongue. It is my understanding that PET can also be more prone to false positives than other scanning methods because it notes increased cellular activity, which could be cancer or scar tissue or other things.

-Brett


Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
Re: Stage I Radiation? #26486
06-28-2004 09:24 AM
06-28-2004 09:24 AM
Joined: Nov 2002
Posts: 3,552
San Francisco CA
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Gary Offline
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Gary  Offline
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Joined: Nov 2002
Posts: 3,552
San Francisco CA
One problem with scans in general, including PET/CT, is that they cannot detect tumors smaller than 2mm (i.e. 1/8"). Although prone to some false positives in the immediate post Tx (due to scar and such), it is relatively accurate in pre Tx. PET/CT even more so.

In my case a PET was required as part of the pre Tx workup by the comprehensive cancer center. It verified the location of the cancer and no other "hot spots" which was a relief.

Based on the very agressive nature of SCC (especially in the case of the tongue), most physicians recommend a very agressive approach (and I believe most people will on this site as well). Ultimately you will have to choose which tools in the arsenal to use against your cancer. One of the tough decisions to make in treatment (especially for stage I tumors) is whether to radiate or not. Radiation is no picnic and I sure that if you have read the threads here about the side effects they have scared you pretty good. Bear in mind that many do NOT have severe side effects.

I "only" had radiation and chemo (no surgery) and it was rough for a long time. I am well now, enjoying life again and cancer free (today). Recent studies have shown that radiation significantly improves the odds of survival (at least in the case of breast cancer patients).


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)
Re: Stage I Radiation? #26487
06-28-2004 10:59 AM
06-28-2004 10:59 AM
Joined: Mar 2002
Posts: 1,140
Pacific Northwest
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Joanna Offline
Patient Advocate (1000+ posts)
Joanna  Offline
Patient Advocate (1000+ posts)
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Joined: Mar 2002
Posts: 1,140
Pacific Northwest
DaviR, take a good look at radiation. You have had two occurrences, which makes me a little worried. Radiation is no walk in the park, but as Gary says, some of us, including me, didn't have such a terrible time. Although I had a R side tumor, because SCC jumps sides with impunity, I had R&L rad because I didn't want to go through this more than once. I am now 2 years plus from all that, and have no regrets for having aggressive treatment. If you can get IMRT rad as I had, you will end up with saliva. I was so very fortunate to be able to have that, and today do not have dry mouth. That has traditionally been the worst part of rad, but with that out of the picture, radiation is a small price to pay for peace of mind, or as much as one can have with this awful disease. Go for that second opinion!

Re: Stage I Radiation? #26488
06-28-2004 06:45 PM
06-28-2004 06:45 PM
Joined: Nov 2002
Posts: 541
Hong Kong
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karenng Offline
"Above & Beyond" Member (500+ posts)
karenng  Offline
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Joined: Nov 2002
Posts: 541
Hong Kong
Hi DaviR, regarding your question 1, I never had any PET scan in my life.My team of doctors did not arrange one for me and even when I talked about getting one at my own cost, my oncologist thought it was unnecessary. I am almost 3 years post diagnosis and I just had my routine appointment this morning and everything is clear and fine. I have MRI, CT scan and ultra sound as my follow up tests.As for radiation, I am not in a position to answer that since I am of a very advanced stage and received both radiation and chemo. No surgery though.

Karen


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
Re: Stage I Radiation? #26489
06-29-2004 12:50 PM
06-29-2004 12:50 PM
Joined: Dec 2003
Posts: 207
Apex, North Carolina
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AzTarHeel Offline
Platinum Member (200+ posts)
AzTarHeel  Offline
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Joined: Dec 2003
Posts: 207
Apex, North Carolina
Here's my take. I was borderline stage I/II tongue cancer tumor with no lymph node involvement (according to PET and CT scans as well as doctor's manual examinations). My cancer was well-differentiated.

My docs recommended radiation, but said that in my case it was typically consider optional because of the stage. I went ahead and did it because of the threat of microscopic cancer cells that may have escaped passed the margins.

Well, even though I had radiation, my tumor came back in my lymph nodes, just below the area where they radiated. In other words, there was microscopic cells that slipped into my lymph nodes undetected (smaller than what shows up on the scans). Since that area wasn't blasted with radiation, it regrouped and regrew there...

Basically, from all I've learned and read, you want to be as AGGRESSIVE as possible early in the game with this type of cancer. Even though I went the aggressive route, we weren't aggressive enough in that the docs chose not to radiate the whole neck. I would go for a second opinion, but I also would consider taking the most aggressive route now to save yourself the headache of what I'm going through -- which is now another round of radiation and possibly chemo as well to wipe it out for good this time (if we can)...

Getting through radiation is no picnic but it's doable... Good luck to you...


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.
Re: Stage I Radiation? #26490
06-30-2004 12:58 AM
06-30-2004 12:58 AM
Joined: Jun 2004
Posts: 85
Atlanta, GA
D
David Rex Offline OP
Senior Member (75+ posts)
David Rex  Offline OP
Senior Member (75+ posts)
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Joined: Jun 2004
Posts: 85
Atlanta, GA
AzTarHeel - Pet scan scheduled tomorrow. Sounds as if I am in a very similar situation, with cells or sites too small to be seen, yet. How did you and the doctor discover the reappearance? I would prefer IMRT, but without specific tumor(s), it sounds like field radiation is needed. Good luck with your second rad.

Appointment on Friday 7/2 with rad oncologist.

Thanks to all for your help!

David


T1N0M0 Partial Glossectomy 2/04, Recurrance w/ another P.G. 5/04. IMRTx33 7/04-9/04. T2N2M0 recurrance in throat, 11/04.
2nd tumor 1/06/05, Chemo 1/11-05 Died 02-16-05 Wife: Brenda
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