| Joined: Sep 2013 Posts: 21 Member | OP Member Joined: Sep 2013 Posts: 21 | Hi all...just had my PET SCAN & CT SCAN last week...according to my family doctor...the results were negative...but still waiting to speak with my oncologist to confirm these results...wondering if those scans are pretty accurate?
ORAL CANCER SURGERY JAN 28, 2013 RADIATION, 38 TREATMENTS APR 18, 2013
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | No scan is 100% accurate, but the PET/CT is pretty high in the 90% range. It also depends on the area looked at, and what for, so the CT, MRI, may be superior looking at bone, soft tissue, nerve, veins, others, but the PET/CT is "generally" superior, followed by the MRI high 80 range and then CT mid 70%. The CT is most often used, is the cheapest, and needs no specialized training like a PET/CT. The PET/CT can detect cancers as small as 5mm, and others at 1cm. If you received a clear scan, there is no need for another to reconfirm, and doubt any other scanning would be done in absence of any suspicion. I had 10 PET/CT scans, which detected cancer when it was there, an MRI didn't one time.
Congratulations!
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | Congratulations, it sounds like a great result! Since your family doctor was almost certainly simply relaying the report from the radiologist, you may want to ask for a copy of the report so you can see it in black and white, and put that anxiety to bed.
53 T3N2aM0 HPV+ 5/26/13 discovered painless superball-sized lymph node in neck 6/26/13 DX SCC R palatine tonsil 7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes 9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses 10/16/13 Treatment ends Dec 13 Ulcer appears at surgery site Jan 17 Biopsy -- no cancer! Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | 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 | Great news!!!! Now you can put this whole thing behind you and move on to making a complete recovery. 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 2013 Posts: 21 Member | OP Member Joined: Sep 2013 Posts: 21 | I would like to put this to bed..but I have a nagging sensation in my cheek ...its not terribly painful...but enough to make me question what is going on in there...wondering if its normal post radiation symptoms...3.5 months out of radiation...i'm really happy the PET/CT were negative...just afraid it was missed...that's all...the pain is mostly where I had extensive surgery...I pray to god its just nerves / radiation damage.... I am gonna go see my oncologist this week and see what he says....I also have Lymphedema...hoping that plays a role in that nagging sensation as well...I guess i'm just begging for good results and feeling close to normal so I can put this behind me .....
ORAL CANCER SURGERY JAN 28, 2013 RADIATION, 38 TREATMENTS APR 18, 2013
| | | | Joined: Aug 2013 Posts: 5 Member | Member Joined: Aug 2013 Posts: 5 | I have cancer of the soft palete
After initial Biopsy which indicated SCC of soft palete I had a CT Scan on 8/2/which was negartive.
Then Oncologist to double check decided to do a PET/CT on 9/4 which also was negative.
Then my ENT Physician decides that he wants to do another biopsy near original site. We do the procedure on 9/11 and results come back poitive on a tissue sample (biopsy) taken near the original site.
So now we are having an MRI done this Friday (9/27)afternoon. That was a decision made by the oncologist as he is trying to locate the area that is impacted.
ENT wants to do exploratory surgery, which as far as I am concerned is out of the question. One does not go exploring when you have no idea where or how bad the site is.
I truthfully would say that one can not go totally by these SCANS. Biopsy's don't turn up negative unless there is nothing there so I would advise you just do not go by the SCANS.
Good luck to you and I hope everything is truly clear.
As far as me Hopefully this Friday they will solve the riddle of where my cancer site is.
Bruce F
Bruce F
| | | | Joined: Sep 2013 Posts: 21 Member | OP Member Joined: Sep 2013 Posts: 21 | Thanks for replying...if the pain continues into beginning of next week...i'm gonna request a biopsie...I can't continue to live like this...the not knowing what it going on is not considered living anyways...its not a life I want...
ORAL CANCER SURGERY JAN 28, 2013 RADIATION, 38 TREATMENTS APR 18, 2013
| | | | Joined: Sep 2013 Posts: 21 Member | OP Member Joined: Sep 2013 Posts: 21 | Very worried...I've had my first PET / CT Scan the 16th of sept...had my results...they came back clean...but the very next day I had those scans...I've always had pain in my right cheek...but it had moved to my jaw and down my neck...basically everywhere I had surgery...the neck is just stiff..not very soar...but the face is rididulously painful at times...I've went to see a doc for a checkup ..because I had a clear scan...they told me it must be an infection...I've been on the meds for 5 days and no improvements....not knowing what to expect from surgery followed by radiation treatments...everything that happens is very scary..there is no lump in my cheek...wondering if any had similar symptoms...I had 55% of my top palate removed right to my jaw....8 teeth total came out with it...they took out my gums/bone also...just wondering if this could be nerve damage or something..i also have some lymphedema involved....i'm calling tomorrow for an appointment to see my oncologist..i'm gonna request a biopsie..whatever the results..i'll deal with it as they come...but I can't live in pain like this and fear...
ORAL CANCER SURGERY JAN 28, 2013 RADIATION, 38 TREATMENTS APR 18, 2013
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 |
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.
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | If you've had rads and chemo you could have some lymphedema (doesn't only happen with neck dissections) there is always damage to the area being radiated, and fibrosis. There is also a lot of healing going on. Your body's reaction to damage is to fill the area with fluid - blood and healing elements that can also cause swelling and the damage from the radiation can make it hard for that stuff to circulate. And fibrosis can cause hardened and stiffened areas. Gentle stretching at this point isn't usually a bad thing. The usual signs of infection are hot spots (areas that are hot red and sore) and of course if it's a raw area there would be pus etc...
You've had a scan and are clear so maybe a bit of gentle massage?
best of luck... try not to worry.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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