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WendyG Offline OP
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Got word yesterday that our appointment has been rescheduled again. 6th of september is the new date (so far). 3 long weeks of waiting will have passed by this date. Have been told pathology are short staffed and running behind by one lady and told by another that the clinic double booked us (probably the truth). I've tried jumping up and down about it but it didn't work. All we can hope is that the news is good when we do eventually get it. I will keep everyone posted. Thinking of you all as always.


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
Joined: Jul 2009
Posts: 453
WendyG Offline OP
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Got our long awaited biopsy results today. Got to say the last 3 weeks has been extremely stressful. Hope we never have to go through a long wait like that again. On a bright note, a very bright note, his biopsy came back as all clear for cancer. Woohoo. We are extremely happy. All of them (throat, jawbone, tongue) came back good. The gum biopsy is showing low grade dysplasia. I don't know too much about this but will do some research and learn.

So next step is HBO. He will have about 20-30 dives, then he is having surgery. They are going to scrape as much dead bone away as possible, possibly needing to insert a metal plate to support his jaw (depending on how the surgery goes). They are also going to remove the area of dysplasia and hope to get clear margins with this. Then they are going to send him straight back to HBO (day after surgery) to start another round of dives.

If all this fails (hoping and praying it doesn't) then back in for more surgery. But at least now we are getting somewhere. So glad the results were ok. Feel like I've been holding my breath for the last 3 weeks smile

Steve passed his 2 year cancer free anniversary on the 28th of August. We weren't game to celebrate it until we knew the biopsy results. Yes we are celebrating this milestone now.

Not sure when HBO is starting yet but will update when I know more.


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
Joined: Dec 2010
Posts: 5,260
Likes: 3
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That's sooooooooo fantastic, it's always easier to face surgery if you have good news propping you up! smile hugs ang good luck with the HBO!


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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Great news!!! Isn't it funny how surgery is something to celebrate in this new life. Hope you do not have to wait for the next step to start too long.


CG 2 Emmett,7/09 DX SCC rt tongue. T2N1M0, 1 node, marg neg.4/10 PET/CT clear, 9/10 C back. 10/10 Rad hemi, 2 tmrs mod diff. resec flr of mth. Flap 4 nodes/w/ext cap. 11/10 Peg, CX3 HD, 30 rad. 1/31 & 3/21 6/11/11 - PET/CT "activity" 9/11-all Clear. 12/11 peg out. 2/15 still all clear! 9/14 Prostate cancer treated with pencil beam proton therapy, best radiation experience. Keep it in mind as a treatment option for all tumors that can be seen including head and neck.
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Terrific news about the biopsy! Waiting for results is so hard. Yes, it is time to celebrate the 2 year mark!!

I hope you don�t have to wait too long for the next steps in the process. Good luck with the HBO and surgery.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Aug 2007
Posts: 1,301
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Congratulations to the both of you on Steve�s 2 year CANCER FREE. I know that this is major for the 2 of you and wish I could celebrate with you but have done so in spirit smirk
Hope that the long awaited HBO does the trick to ready him for the surgery.
Love to your both
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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Posts: 453
WendyG Offline OP
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Thanks everyone. HBO assessment is next wednesday and the doctor said they will get him started asap. The plan is 20 dives, then surgery. He will then start another 10 dives immediately after the surgery. Fingers crossed it works.

Gabe, we were celebrating your 5 year anniversary in spirit too. Such an amazing milestone for both you and Steve.

As for me, I'm hoping to head back to work real soon. Just wondering how other carer's have coped with this. Steve and I have been together every day since he was diagnosed over 2 years ago. Steve is my best friend and I have cherished every minute of this time. As much as I'm looking forward to returning to work and being somewhat normal again, I'm really worried I'm going to have severe seperation anxiety when the time comes. How do you cope with going back to work and trying to be who you used to be, when all the time you have changed? How do you cope with being apart after you've learnt just how valuable the time you have together is? I hope these questions make sense. I'm happy that life is starting to return to 'normal' although a different 'normal' to before, just not sure how to cope with the emotional side of being away from Steve smirk


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
Joined: Jul 2009
Posts: 453
WendyG Offline OP
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Hi, just an update on Steve. He had his HBO assessment today and is all set to go ahead with HBO. He starts Monday so there is no waiting. 20 dives, then he will have surgery, followed by another 10 dives. Fingers crossed it works and we can get his jaw to heal after all of this time.


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
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Wendy that is excellent progress Steve has made!!! Im so happy things have made such a huge turn around for both you and Steve. If Steve doeant yet have tubes in his ears, it may be necessary. I did ok thru many HBO dives but sometimes had some trouble with my ears. Its a very simple out patient procedure to get tubes placed. Best part is they fall out on their own so he wont need any other surgeries after he would get them. Best wishes with the HBO, hope Steve will finally heal and put this behind him.


Christine
SCC 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 smile
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"OCF Canuck"
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I can't say awesome enough times - I'm so happy for the both of you!,


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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