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#99116 07-09-2009 02:34 PM
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Geri Offline OP
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Hi,
Well, we just returned from the RO and she ordered an MRI for Richard and his appointment is for Sat. She said that, at this point, the Pet could still show false positives and the MRI is a good scan to do at this point in time. I automatically thought that she would order the Pet and I'm wondering if the MRI will give us an "all clear." Has anyone else had this experience of having the MRI first? We've gotten excellent care, so I would hope money isn't the deciding factor in what follow up tests to do. Should we still demand a PET along with the MRI, or wait until the results of the MRI are read? The RO was also very pleased after seeing Richard and reiterated what the H&N surgeon said yesterday about the treatment working. I'd appreciate any feedback...Thanks, Geri


Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
Geri #99118 07-09-2009 02:41 PM
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I never had a Pet post Tx, only MRI's and my first 2, one at 3 months and the 2nd at 6 months both produced an "area that can not be excluded". Of course both times I was told "not to worry, I'm sure it's not cancer." Yeah, I slept peacefully after hearing that!!! Finally the 3rd MRI at 9 months produced that words I longed for, ALL CLEAR!


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.
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In the UK Pet scans are not used routinely.Rob only had MRI and these gave all the information the doctors needed


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Cookey #99158 07-10-2009 03:23 AM
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I have had all the scans and more than once. False positives were the reason. But I do think all 3 showed the Drs different things they needed.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #99159 07-10-2009 04:06 AM
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T. can't have a MRI due to a rod in his leg from an old compound fracture. PET is the only way after a CT. A lot of insurance co.'s won't pay for the PET--fortunately not in his case.


Donna

Caregiver to Hubby,Stage IVb, SCC to left tonsil, Mets to nodes, Tonsillectomy, Cisplatin,Taxotere,5FU x 3, IMRT 33 Rads + Carbo x 6, RND 03/09--Dx NHLymphoma 04/09, CT of chest, stom, pel--all clear, 05/09 Pet--all clear, 08/09 Pet--all clear
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I have metal in both shoulders and it doesn't bother the scans. They are stainless and the magnetism ignores them.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #99184 07-10-2009 07:17 AM
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Thank God I have excellent insurance because I work at a hospital so they don't hesitate to order any tests or treatments because of cost. We don't pay a cent for tests/treatments/hospital stays etc. John's Oncologist ordered a CT Scan with IV contrast of his neck and chest for the beginning of August. He will be 3 1/2 months out of treatment then. He said he doesn't like ordering PET scans for follow-up of this type of cancer because the radiation causes to many false/positives. John did have a PET scan of his entire body before treatments began. I hope your husband's results are great!


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
slim #99186 07-10-2009 08:22 AM
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My doctor was pretty insistent on a PET scan a year from treatment ending and said I will have one more 2 years out.


Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
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Geri Offline OP
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Hi.
Well the results from Richard's MRI came back. The results look good with post treatment changes where the cancer was, but no finding for tumor. We were hoping for an"all clear" but the RO has ordered a PET scan. She told us that the report mentioned a "thickening" and she wants a definitive answer instead of waiting. Both the RO and the H&N surgeon are very reassuring that this is scar tissue and expect the Pet won't show any tumor. The node has shrunk up and the H&N surgeon said, that upon examination, everything looks good. Richard's appointment for the Pet will be on July 26th. So, we have to wait awhile longer for our answer.

Has anyone else had this experience? It seems that most people have a Pet post treatment. David, I know you had 2 MRI scans before the 3rd "all clear." Why didn't your doctors do other testing at the time?

After all the treatment, it's going to be several months for everything to return to it's "new normal." I guess I expected them to wait another couple of months before another test. The RO wants to have an answer for us now and she is pretty pro-active about getting things done. Well, that's our news. We are staying optimistic, but as you all know, waiting is so difficult.

We are planning to make a big move by spring and we are starting to get our house together. After almost 30yrs in one home we have accumulated soooo much stuff. From the big city to the country and closer to our daughter and grandgirlies. Richard would also like to complete one more job before we move. A little more money would come in handy. Sorry I'm starting to ramble, but going through this testing again brings back memories of the diagnosis and treatment. We've gotten back to doing all of our normal activities and routine, but this is a painful reminder uncertainty will always be hanging over our heads. However, we never lose tract of how very lucky we are and are grateful for every day on God's green earth. Any comments would be appreciated...Geri


Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
Geri #99769 07-19-2009 12:54 AM
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Geri

all I can say is that none of the 4 PetScans/CT I have had in the last two years were "definitive" nor even helpful. In contrast, the MRI's identified the cancer clearly. So if the MRI did not show cancer, as it sounds, then all should be well. Don't worry if the Petscan does 'show" something as every one of mine was false. All they are good for in my opinion is to stage the radiation fields.
good luck on downsizing, We are planning a move this Spring also and sorting out stored "stuff" is turning out to be a Herculean task.


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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