| | Joined: Mar 2009 Posts: 109 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Mar 2009 Posts: 109 | I heard that healing spots can throw off PET, and since the areas of interest are all around the healing spots, that's why the doctors give full three months before ordering the scan so that everything would heal.
I'm seeing the surgeon 10 days from now, I'll ask him more about this and report what he tells me.
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | | 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 | 3 months is not nearly enough either.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Jenka,
Don't despair! I finished treatment last August, and I'm still not 100% healed and overall, I've healed incredibly quickly. If your docs are telling you that you'll be fully healed at only 3 months, then you're getting faulty information. Your mouth was under full assault, and those tender taste buds and other tissue need lots of time to recover. Try to be patient and just keep doing what you're doing.
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | I have to agree with Margaret and David that 3 months might be a little optomistic foe a PET, especially with all of the surgery you have had with radiation. 6 months might be more realistic. 3 months might make sense for a post Tx, baseline MRI however.
From past experience I can tell you there is nothing more terrifying than a "bad" scan report only to find out days later that the secondary reading says it's no big deal.
Last edited by Gary; 07-06-2009 12:23 AM.
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)
| | | | | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2004 Posts: 155 | I do not know about PET scan results but I do know about Bobs experience in healing and at three months it was the first time he actually thought he MAY have really tasted something ..besides coffee which he was not all that fond of before treatment but for some reason was the first "taste" he really enjoyed after. So many things "burned him" as he described it or just tasted funny. It took at least a year before he was close to having most things taste the way he remembered them, and much longer before some things that seemed bland to me were tolerable him to like anything with vinegar in it even ketchup!! So do not be discouraged!! It takes a long time but it truly does continue to improve in tiny steps every day over that long time!
Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04
Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I would say 3 months isn't even on the score board. Sounds like a Dr is trying to ease your mind some. Just do your best, as you know you have to and the time will be here for the Scan. The Drs hate to see us worrying about these situations and trying to hurry 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
| | | | | Joined: Mar 2009 Posts: 109 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Mar 2009 Posts: 109 | Yes, I have tons of burning! We were at a party yesterday ( hey, I couldn't even think of going to a party a month ago!, now I get tired, but I can manage a couple of hours!), and while I usually avoid anything with any type of acidity, I forgot that nestle iced tea had either lemon or ascorbic acid. My eyes nearly fell out, it burned so much. Anything tart or sour is really awful, and it reverberates in my ear and neck. I thought it was because I had open wounds, but the drs don't see it.
As for scan, my 3 months post-tx is Aug 8th. Radiation oncologist said that
everything looked so strikingly beautiful that he ordered PET for the "second half of July". I don't have a date yet, but he wrote the 15 th on the order form.
Last edited by Jenka; 07-05-2009 08:20 AM.
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | | 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 | My first PET scan was at 3 1/2 months after radiation and chemo ended. Remeber everyone here is different, the location of their cancer (base of tongue, cheek, gumline, etc.), treatments, ages, medical histories and how fast they heal. I did not have surgery so thats probably why I was able to have my PET scan done so quickly after the end of chemo and radiation.
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 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 | Jenka,
That must be the INNER BEAUTY we all hear about!!!
Congrats!!
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: Jun 2009 Posts: 14 Member | | Member
Joined: Jun 2009 Posts: 14 | A PET scan detects elevated metabolic activity in tissues. If the scan shows a "hot spot" in an area where there wouldn't normally be increased activity, it's considered a likely cancer. The problem is, garden-variety tissue inflammation also reflects elevated metabolic activity. So if your mouth is still sore, and if that's accompanied by any tissue inflammation, then you could get a "hot spot" on your PET scan that looks just like cancer -- a false positive. That's the risk of having a PET scan done too early in your recovery process. My oncologists are waiting months before scanning me. I finished radiation on June 4, and they are tentatively planning on September -- at least 3 months later -- just to make sure all the tissue inflammation subsides first. I'm sure that if I still have mouth soreness at end of summer, they'll delay scanning even longer. If you still have mouth soreness and your scan time is approaching, you may want to raise this issue with your doctors. You don't need the stress (and wasted cost) of a false positive.
Age 61, stg IV SCC (tonsillar, invasive at back of tongue, spread to neck lymph nodes); Dx Nov. 2008, nonsmoker since 1974, very light drinker, no other health issues; no surgery, no PEG, 4 cycles chemo (TPF), then weekly chemo + 7 weeks radiation (2 per day) incl IMRT = 70 doses total, done 6/4/09
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