| 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 | Oh dear. I have to have another surgery: 30 minutes, two nights in hospital. Most of my tissue is back from the lab, most with clear margins but one bit in cheek does not have good clearance so surgeon is lifting the flap, cutting a bit more out and sewing it back down again. Bone specimen is not back yet so when the extra cheek tissue and bone is added to mix they'll decide what the next treatment options are. Lymph nodes show no evidence of disease which is good but with this cancer I can't count on anything. Strange thing is, I feel so well even though I'm quite sore. I have some side effects from the painkillers but in myself I feel really well. If only it was as simple as that.
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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | Alpaca - you are an experienced cancer warrior. You have victoriously battled this demon on and off now for 18 years. I'm sure you have had your ups and downs along the way, but in all instances you have come out the other end of the tunnel better off for the journey.
That will happen this time too. So, if you have a little nagging feeling in the back of your head about this procedure, I suppose that's okay. I expect you will think about it a little and then realize it will be what it will be and then move forward with the procedure, the healing that will occur afterwards and then the getting on with your life in a positive way.
In the meantime, you know your OCF family is watching out for you and thinking of you. Hang in there, you are strong, compared to what you've already endured, this is a walk in the park.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Good luck Alpaca with surgery, and the pathology.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Wishing you all the best. It sounds like your surgery team is right on top of it - so that is great. Praying for more clear pathology results.
I am happy you are feeling well. Whatever the next steps are, remember we are here with you.
Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | 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 | Alpaca you will get through this. So glad the margins were good, sucks about the second surgery but your dr seems quite proactive so that's terrific!!!! 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
| | | | 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 | That is wonderful news on the clear lymph nodes.Wonderful So, now you know you just have have a slightly larger excision on the one side. After what you have just been through this will be a walk in the park. Make sure you have a script for plenty of pain meds on discharge this time. Too much is better than not enough. You will get through this one. I hope you have battened down the hatches for Cyclone Lusi. We have. I even cleared all the gutters. 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: 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 | Thanks everyone. Unfortunately it wasn't quite so little. Everything seems to throw up more problems. My mouth wouldn't open very far so I had to be intubated through my nose while I was awake. This was after a nervous 5 hour wait in pre-op from 8.30 til 1.30. I had been nil by mouth since midnight. Then, when I woke from surgery I was in awful pain - about 9 - and it could not be quelled for hours. I started to cry for the first time since my diagnosis and couldn't stop. After I'd calmed down I discovered that they had put a gag in my mouth and been forced to extract my two front teeth. I have no friends in the place where I live because I am new there and spent most of my time caring for my husband. Going to all the new groups I've joined with scars is bad enough but without my front teeth ... Most of the bottom ones went in the last surgery. So I am going to have to rethink my social life. I'm not allowed to drink but can wash out my somewhat bloody mouth. Just now a stitch came out. From last surgery or this one? Worry, worry. Because mine was a small procedure they seem to be giving me the nurses who are the worst communicators so I am not a happy bunny. Can read and write though so should be rteful for that.
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 | Goodness, I didn't realise the surgery was to be so soon. Those awake intubation are quite something aren't they. Usually the amnesiac medication they give you ensures no memory of the procedure. You are unlucky if you can . Prior to his Laryngectomy Kris too had all his intubations in the awake mode. Sorry to hear about the teeth. It must have been necessary to be able to get in your mouth to do this surgery. I know you are worried about appearances and that it is trite for me say not to be. But don't worry about this now. I truly hope your pain is under control now. Just keep smiling at those Nurses and force them to be pleasant. I am also a worrier so I know what that's like. Doesn't do us any good. I will have to introduce you to my Mum sometime. They live in Red Beach too. Hang in there, 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 | Can't add much more to what Tammy wrote but just want to let you know you are in my thoughts Maureen. Glad to read mid week that the lymph nodes were clear and at that stage you were feeling pretty good. Do you have the result from the bone specimen? Remember way back when that mine took a week at least! Sorry to read about the teeth and also that you are not getting the best treatment from the nurses. Hope your son is still there to sort that out? Sending lots of love and {{{hugs}}}. Just wish you were close by!! Gabriele X
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 | Thanks people. I'm hanging in there, just very uncomfortable in the mouth now. Sometimes I think discomfort is almost as bad as pain. When my pain went it went almost completely and is rarely more than 2 at this stage. My youngest son is still staying with me and doing a great job but has to go home to the UK on March 31. Eldest son is a great advocate too but there's not a lot they can do now. My wound hasn't fallen apart! I'm having lots of family visiting. Sometimes you can have great conversations in hospital. People seem to open up. Pity I'm not quite up to it but it has made the time pass so well. Lovely registrar told me they'd file an ACC claim for my teeth and that the RT shouldn't be too bad where I'll be having it. Might get my new toothy pegs well before the end of the year. (One of the cheerful and communicative nurses has just come in and reassured me a bit more about the stitch.) So good to have this space to express myself. I hope my ramblings might resonate with others but it's just therapeutic to let it all out. Love to all, Maureen.
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.
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