| | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | OP  "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Hi everyone. I was pretty much a regular here in 2009/2010. Had the tongue flap/neck dissection etc and have kept healthy since then with most speech and eating functions only slightly problematic. At that stage I'd had three cancer diagnoses in my life and I'd survived all of them. By the end of last year I thought I was pretty damn smart, although I wasn't very happy. I was struggling to learn how to live alone after my husband's move to a dementia unit. Getting another cancer was the least of my worries so when I rolled up for a 6 monthly check up in Auckland I felt only the slightest little prickle of anxiety. But no, the surgeon took one look and exclaimed, "How long have you had that manky patch back there?" It's in my left cheek up high. I couldn't feel it although the left side of my mouth is where all the food washes up and it's often sore and irritated. This was 11 December and there was some hold up with the biopsy results. It transpired that they'd had to send the sample to a second lab to confirm it was cancer (I think). I'm notorious for being reluctant to follow up surgeons by cellphone and I'd also come down with gastro-enteritis so my son pestered the surgeon until Xmas Eve when the results came through: a small early cancer but I'll need THE surgery and a patch. My son knows little about cancer so I have no details of grade/type/surgery etc and will have to wait till tomorrow, 6 Jan when I will throw all caution to the winds and text the surgeon, ring the hospital clinic and so on.
If it's as small and early as the second hand report suggests it is, then I'm very lucky but oh how I hate to think of another surgery. I've had enough thoracotomies, laparotomies and tongue ops to last several life times!
Making it rather bizarre was the fact my son delivered the diagnosis to me through a closed ranch slider because my gastro-enteritis was so virulent that I decided to keep away from everyone till 48 hours after it passed. Xmas alone!
So I've had some weird cancer diagnosis delivery in the past but that capped the lot.
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Hello,
I have just sent you a PM and then scrolled on down and saw this.
I am so sorry that you are facing this again. I'm sure the last year has been incredibly stressful for you and then this again.
I would definitely be following up tomorrow and also push to get into the next Friday tumour Board slot. Are you being treated at Auckland Hospital?
The good part is that this is early and small. I know the thought of surgery again is daunting, but it is what you have to do to be cancer free.
Kris's recurrence was a bolt out of the blue so I know how you are feeling.
I hope while you are waiting you do get quality time with your family and Grandbabies.
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 2017 - 5 years disease free. Woohoo!
| | | | | 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 | Im so sorry you have been diagnosed with cancer again! If its caught early then it should be a simple surgery to remove the tumor and hopefully thats all you will have to go thru.
Wishing you all the very best!
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: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 |
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Hoping things will not get too complicated. Sorry to hear you have to go through this again. Best wishes to you.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | I just saw your post and am wondering if you have a reply now from either the surgeon, hospital or clinic my friend?
I am so sorry that after all you have been through that you have all this anxiety and no doubt had a rotten Christmas/New Year!
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
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Just replied then lost it! I got through to the right person at Auckland Hospital who was organizing my appointments as we spoke. There seems to be some difficulty fitting me in for a scan but I should see the multi-disciplinary panel on 17 January. Phew! What a relief it is when a plan of action is put in motion.
And I was sent the pathology report. It's SCC in situ with probable invasion into the stroma, meaning that it has gone that one step further than pre-cancer but is still very early. Lots of dysplasia and inflammation. (Surgeon is away so I've had to interpret it myself.)
So, surgery and a patch will be needed but so good to have got through that Xmas/New Year hiatus when nothing can be resolved.
Love to all:)
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Great news. Just getting that tumour board appointment is a relief.
The pathology sounds like it is indeed at an early stage. Hoping this will be a relatively easy fix.
Spend this coming week doing what you most enjoy to take your mind off this, - if you can. I see you enjoy photography so hope the weather will be kind.
Keeping you in my thoughts,
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 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | I agree with Tammy and am glad to see that you have the pathology report showing early stage. 10 more days and you will have your meeting with the panel and no doubt a clearer game plan. I also will look forward to seeing some great pictures of the wonderful place where you live  . 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
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hopefully they will move on it quickly and kick it in the gut!!!hugs! you can do this.
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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