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#147275 - 03/18/12 05:02 PM Wading through the wait
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
Hi Everyone,
I know some of you know we are going through this. Kevin had a spot on his PET that we are looking into. I know all about the false positives, I am just trying to find the patience and peace while we ride out this waiting period. Tomorrow we have an MRI at 10:30. Then we wait to see what they think of that. If they deem necessary, the biopsy will be Wed. So far the new ENT is saying he thinks we will not need a biopsy. He doesn't want to carve up his tongue for no reason. Thus the MRI.
I need to find peace if that is the decision that is made. It is not my tongue so I can't make the decision for Kevin. If anyone has had a second biopsy done in the same spot as radiation happened, how bad was it? Was it super invasive and was the recovery long? Maybe answers to those questions will help. The ENT used terms like hacking him up for no reason, and fileting his tongue for no reason.
Any input is appreciated.
I AM breathing Eric, just want to really make an informed decision. Even though the desision is not mine to make!!
Thanks,
Kathy
_________________________
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 10/12 and 10/13 and ct in 6/14

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#147277 - 03/18/12 05:29 PM Re: Wading through the wait [Re: KP5]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Where is the spot? His original tumor was BOT ? Why would they have to hack? A biopsy is just a small sampling and he's not previously had surgery. a biopsy precursor to potentially more invasive surgery - though if they do go in and remove what they see then they may even get clear margins. I haven't had a radiated area biopsied before but anyone who's had salvage surgery might be able to give you a heads up on the healing time, ultimately, you know your stuff, and with his original ct being clear, two months post treatment, and it not having been PET... I would think its likely been there all along and hopefully just healing or scar tissue, or inflammation... Hugs! God luck Tuesday.
_________________________
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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#147280 - 03/18/12 06:37 PM Re: Wading through the wait [Re: Cheryld]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9323
Loc: PA
Sounds like this spot if on his tongue. The ENT certainly has a way with words (NOT!). Anyway, dont panic over this. All too often a PET will light up and inflammation or scar tissue. Its happened to me. Ive found this especially true when its done closely after finishing rads.

Hope its nothing, best wishes!!!
_________________________
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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#147281 - 03/18/12 07:06 PM Re: Wading through the wait [Re: ChristineB]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Kathy, you are doing just fine my dear friend and I'm proud of you, Kevin is very lucky to have such an astute and caring caregiver!

You are doing everything right, the waiting game sucks and plays horrible tricks emotionally. My advice is to try and keep busy, like arts and crafts (underwater basket weaving is da bomb YO!), exercise, SEX!!! (my favorite!), games (can I get some Canasta up in here!) and whatever you can to get by until the results comeback.

All we can do is take one step at a time. Sometimes those are slow painful steps, and that's why we have each other to lean on for support and advice. Keep on keepin on my dear friend, we are with you and Kevin every step of the way!

Love ya Lady!

Eric
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#147286 - 03/18/12 09:08 PM Re: Wading through the wait [Re: EricS]
tamvonk Offline
"OCF Kiwi Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 03/11/11
Posts: 972
Loc: New Zealand

Hi Kathy,
I know that this is scary. Breathe. Take it one day at a time.

My Kris also had a BOT tumour treated with rads and chemo.
At his routine checkup and scope the ENT saw a new ulcer in the same place as his original tumour.
Kris then had this new ulcer biopsied under a general anaethetic. This caused him absolutely no problems. No pain, no bleeding. A biopsy only removes a small portion, it does not cut hugely into the tongue or carve it up. It is a simple procedure .
Kris also had a CT which showed a small local reoccurence at the same site of the original tumour. This together with the pathology of the biopsy was what was needed to decide the next option for treatment.

As nothing has been seen on Kevins scopes maybe thats why they want to wait until after the MRI. Should this show just healing inflammatory tissue, then a biopsy may not be needed.

All my fingers toes and legs crossed for you both.
Hugs to you,
Tammy
_________________________
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2016 4years post surgery .NED !

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#147287 - 03/18/12 11:11 PM Re: Wading through the wait [Re: tamvonk]
ConnieFL Offline
Platinum Member (300+ posts)

Registered: 04/16/09
Posts: 329
Loc: Fort Myers, FL, Lockport, NY
Hi Kathy,

The spot on the tongue is biopsied they only take a scrapping. I had that done to see if I had Cancer. There was nothing to it. The tongue is not carved up I don't know what your ENT is thinking saying that.

I only had a PET scan when I was first diagnosed. After surgery I had a CT Scan after 6 months, then once a year with contrast and without contrast from the waist to the head. My CT Scan in Oct. showed I have scar tissue and some inflammation wonder why your ENT didn't do a CT Scan.

My Surgeon told me he doesn't do PET Scans after the first, I never asked why but after reading on here I know why, false positives.

Hope all goes well.

Take care,
Connie
_________________________
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.




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#147290 - 03/19/12 12:01 AM Re: Wading through the wait [Re: ConnieFL]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
This spot is BOT again, but a little more in the middle of his tongue. The first was on the right side.
Thank you soooo much for your responses.
Will be in touch when we hear something.
Love you guys and am so thankful to have this site. Thank you Brian!!
_________________________
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 10/12 and 10/13 and ct in 6/14

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#147305 - 03/19/12 01:29 PM Re: Wading through the wait [Re: KP5]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
Quote:
If anyone has had a second biopsy done in the same spot as radiation happened, how bad was it? Was it super invasive and was the recovery long?

Short answer: NOPE
When my MRI indicated the cancer had come back in the same spot (BOT) that had been radiated the first time, my surgeon insisted on a biopsy before considering salvage surgery. I went into the hospital that morning, strolled out that afternoon, nursed a sore throat for a day and was back to "normal". Good thing too, as those were the last three weeks I would eat or drink, unbeknownst to me.
Keeping fingers crossed that Kevin's MRI is good
Charm
_________________________
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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#147311 - 03/19/12 06:02 PM Re: Wading through the wait [Re: Charm2017]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
Thank you Charm...I think. ;o)
MRI is done. Waiting for the phone call. Sigh.....
Yes Eric, I'm breathing. ;o)
_________________________
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 10/12 and 10/13 and ct in 6/14

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#147315 - 03/19/12 07:46 PM Re: Wading through the wait [Re: KP5]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
Inflammation!!!!! Not doing a biopsy as of now. Will check another MRI in 3 months. Phew!!!
_________________________
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 10/12 and 10/13 and ct in 6/14

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#147318 - 03/19/12 08:17 PM Re: Wading through the wait [Re: KP5]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 945
Loc: Ohio
Thank heavens! Glad to hear the good news!
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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#147320 - 03/19/12 09:44 PM Re: Wading through the wait [Re: Maria]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9323
Loc: PA
Congrats Kathy! So glad it turned out to be nothing serious. Just another false positive PET. Those darn things can scare a person to death!

_________________________
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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#147322 - 03/19/12 10:29 PM Re: Wading through the wait [Re: ChristineB]
ConnieFL Offline
Platinum Member (300+ posts)

Registered: 04/16/09
Posts: 329
Loc: Fort Myers, FL, Lockport, NY
Great News.....

Take care,
Connie
_________________________
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.




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#147326 - 03/19/12 10:56 PM Re: Wading through the wait [Re: ConnieFL]
Gabe Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Registered: 08/02/07
Posts: 1301
Loc: Sydney NSW Australia
Wonderful news Kathy...now you can breathe!
Cheers
Gabriele
_________________________
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
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family


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#147333 - 03/20/12 12:44 AM Re: Wading through the wait [Re: Gabe]
tamvonk Offline
"OCF Kiwi Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 03/11/11
Posts: 972
Loc: New Zealand
Absolutely fantastic news.
Now, enjoy your lives.
Tammy
_________________________
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2016 4years post surgery .NED !

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#147337 - 03/20/12 12:55 AM Re: Wading through the wait [Re: KP5]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
That's so awesome! Hugs!
_________________________
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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#147340 - 03/20/12 01:29 AM Re: Wading through the wait [Re: Cheryld]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
Thanks everyone. We now know what a false positive feels like! Maybe next time we will be more able to remain calm....doubtful, but maybe!! Thanks again for the support. Onward we go...
_________________________
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 10/12 and 10/13 and ct in 6/14

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#147346 - 03/20/12 03:47 AM Re: Wading through the wait [Re: KP5]
Kerri Offline
"Above & Beyond" Member (500+ posts)

Registered: 08/08/11
Posts: 592
Loc: MA
Wooooooooo hooooooo!!! This makes me so happy!
_________________________
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
42 years old now...I wasn't sure I would make it! Hoping for 40 more!

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#147358 - 03/20/12 01:52 PM Re: Wading through the wait [Re: Kerri]
walknlite Offline
Patient Advocate (1000+ posts)

Registered: 05/13/09
Posts: 1405
Loc: Oklahoma
YEAH!! I am so glad to read that. I was goint to tell you I had a Hot PET scan, and a visible area that was causing apain. We were all worried about it being cancer again. I did have the surgery to remove that portion, and it was necrosis, not cancer. The PET that was HOT was the inflammation from the area around it.
_________________________
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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