| Joined: Jun 2011 Posts: 46 "OCF across the pond" Contributing Member (25+ posts) | OP "OCF across the pond" Contributing Member (25+ posts) Joined: Jun 2011 Posts: 46 | Had my pre-op on Tuesday for my neck surgery (right side) next week.Told it will be a modified radical neck dissection and more extensive than the neck dissection on my left side last year. I also have a growing nodule in my neck which I'm told is very aggressive, though I had put my Sherlock hat on and kinda sussed that out as it's grown over the last 4 weeks and I'd say it's now about the size of a golf ball under my chin.Yeah . . .I know,exclamation mark. I'm having this removed as well and have been told that they will be working very close to the nerves controlling my tongue. Potentially, due to this and the margins they may have to remove, I may be left with an inability to swallow and/or talk. I was expecting a droopy mouth on the right and a sore/stiff shoulder, as I had these last year (for a few weeks),but this news has been a bit of a bombshell. I'm having my surgery - I've decided I've no real alternative if I want to keep living as long as I can, as I've been told a number of times my condition is not curable.However, I am curious to see if anyone has been through a similar scenario and how their swallowing/talking was affected.
50 yrs.Non smok.Mod drink. Tongue canc SCC T2N0M0. Surg. Jul '11 1/3 rd of tongue rem. & sel. neck diss.PEG fitted. Aug '11 6 wks chemo/radio.3 more canc. nodes rem. Feb '12 18 wks chemo. Nov. '12 Mod rad neck diss on right, & pec flap rep. rem. of tumour under chin. More rad to follow in 2013. **update** Passed away September 26, 2013 | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | brendan
My salvage surgery (medical term for surgery intended to eradicate recurrent tumours when radiation and chemo failed) wasn't quite the same as yours but it did result in never being able to eat, drink, or even swallow (without aspiration into lungs). It's especially tough here in the US at Thanksgiving time, but otherwise quite doable. While I hope that you don't end up with such results, just a quick note to say it's not as bad as it sounds. Think of it as an effortless way to achieve ascetism. No worries about overeating with the automatic fasting inherent in feeding tubes. It's been over three years now since my surgery and tincture of time does work. 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
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Brendan please do t believe them when they tell you it's not curable. Have them do the surgery and push for more rads and chemo if you can.
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 | Brendan, Kris has neither a tongue nor a voice box and he can talk. 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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Kris is awesome! in fact you all are.
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: Apr 2012 Posts: 111 "OCF across the pond" Senior Member (100+ posts) | "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2012 Posts: 111 | Brendan, Best wishes for Tuesday. Hope you get the best result. Sally
Last edited by saxicola; 11-24-2012 01:01 PM.
Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol. 10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12. 12/07/11 RIG. RIG removed 05/05/12. 4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
| | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | Brendan, your news sucks, but always remember that they give you bad options so you are prepared. It's not fated. They told me I wouldn't be able to speak for an extended period, and that it was 99% that I would have to have chemo and rad.
I appeared in court 19 days after my surgery, and have determined this week that no chemo for sure at the moment, and no rads. We're on hold to monitor for recurrance.
I was going to say keep your chin up, but that might be considered bad taste (I'm not politically correct - my joke to people was that other lawyers were cheering that at least this would shut me up for a while, lol).
Truly, we're all behind you, hoping for the best on Tuesday
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Brendon, I had three neck dissections in two years, one radical, to the left side of my neck, in addition too, three courses of radiation to the left neck, and still can swallow, taste, etc. They tell you the risks involved for any surgery, which are usually low, but is something to consider, but they would usually not want to do surgery if the risk outweighed the benefit. I too was concerned about the potential effects, but having a good surgeon quelled those fears, and the risks were in the low percentage. I suffer no paralysis, or any other loss except loss of feeling in my neck, little swelling, little stiffness, but major loss of mobility, except rasing my arm overhead due to the neck muscle, vein and nerve being taken out with the RND. A modified dissection preserves one or more of these structures. Good luck.
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
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