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#146057 - 02/17/12 10:57 PM Necrosis??
walknlite Offline
Patient Advocate (1000+ posts)

Registered: 05/13/09
Posts: 1398
Loc: Oklahoma
Well, I had a PET scan yesterday and it came back clear. Oncologist suggested necrosis, since nothing showed up on PET scan. Will necrosis show up on a scan? or do just active cells show up? They suggested calling my ENT about the pain, However it looks just like it did a year ago when my PET lit up and it was just necrosis. I do know that necrosis has to be removed as well. How do you really know the difference without a biopsy? SO frusterated, because talking and eating have become very painful. You all know I have to talk in my teaching job. However I do not think my students would mind if I had to quit talking. LOL
_________________________
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12

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#146106 - 02/18/12 10:20 PM Re: Necrosis?? [Re: walknlite]
Deejer47 Offline
"Above & Beyond" Member (500+ posts)

Registered: 09/16/08
Posts: 710
Loc: Chico, Ca.
I don't know but my understanding of a PET scan is that more active cells use the sugar at a higher rate and cancer cells are the most active. Not sure how a PET would show necrosis, or maybe they're juswt doing the process of elimination.
_________________________
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.

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#146110 - 02/18/12 11:09 PM Re: Necrosis?? [Re: Deejer47]
walknlite Offline
Patient Advocate (1000+ posts)

Registered: 05/13/09
Posts: 1398
Loc: Oklahoma
So we have eliminated active cancer cells through the PET scan, so I guess now I will be headed to the ENT as soon as I possibly can to have him take a look and get is opinion.
_________________________
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12

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#146127 - 02/19/12 02:23 AM Re: Necrosis?? [Re: walknlite]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8398
Loc: PA
Angelia, no cancer is great news! I know you are hurting and how much that really stinks. Ive heard osteoradionecrosis can be quite painful. From experience I know nerve damage can cause excruciating pain. I hope you are able to take something to ease the pain. Good luck with everything!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#146198 - 02/20/12 05:33 AM Re: Necrosis?? [Re: ChristineB]
Marlene41 Offline
Platinum Member (300+ posts)

Registered: 05/10/08
Posts: 357
Loc: CT
Good Luck Angelia -
I hope your docs. can fix this.

Marlene
_________________________
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!

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#146916 - 03/08/12 12:27 AM Re: Necrosis?? [Re: Marlene41]
Dragan Offline
"OCF Canuck"
Platinum Member (300+ posts)

Registered: 07/02/06
Posts: 442
Loc: Regina Saskatchewan, Canada
Hi there,

As someone who's currently dealing with widespread radiooesteonecrosis in the left side of my head, I can tell you it can be a significant issue to treat.

I was first diagnosed with necrosis nearly two years ago, and it's only been in the last two months that they have fully quantified the extent of the necrosis.

It's taken a variety of different scans, and a radiologist willing to take on the task of doing extensive, comparative analysis of the results, to fully understand exactly where the necrosis ends and where healthy bone begins.

In my case, there is a baseball sized area involving both the mastoid process and the temporal bone. The necrotic bone has placed pressure on live bone, specifically a bone spur that's developed as a result of radiation has been pushed into my middle and inner ear, rupturing my eardrum. Since it's live bone, the exposure to air is excrutiating. That, coupled with the pain from the necrosis itself, has made for a bad couple of years.

Complicating this issue is finding doctors willing to undertake something that has no real treatment history has made this a really difficult issue, but that's a whole other story.

Contrary to conventional wisdom that would suggest dead bone = no discomfort; quite the contrary. It is VERY painful. In most cases it does need to be removed because of the potential for other problems increases if it's left alone. Hopefully your Doc can get a handle on the extent of the necrosis without too much additional work, and can get on with resolving the problem for you. It hurts, and it's good to know that they're going to at least try to stop it from hurting. Good luck!
_________________________
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06

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#147122 - 03/14/12 09:36 PM Re: Necrosis?? [Re: Dragan]
walknlite Offline
Patient Advocate (1000+ posts)

Registered: 05/13/09
Posts: 1398
Loc: Oklahoma
Just thought I would update, that the pain is decreasing, and the place one my tongue that was worrisome is almost completely healed now.
_________________________
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12

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#147126 - 03/14/12 11:26 PM Re: Necrosis?? [Re: walknlite]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 795
Loc: NY
Nice..thanks for the update!!!
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/2012

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#147130 - 03/15/12 12:58 AM Re: Necrosis?? [Re: KP5]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4907
Loc: Toronto canada
Yeah!
_________________________
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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#147133 - 03/15/12 01:11 AM Re: Necrosis?? [Re: Cheryld]
Gabe Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Registered: 08/02/07
Posts: 1288
Loc: Sydney NSW Australia
Here is hoping that the pain and the spot on your tongue go away completely wink
_________________________
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
Surgery GIST 8/2013

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