#22014 01-25-2007 03:22 AM | Joined: Jun 2006 Posts: 22 Member | OP Member Joined: Jun 2006 Posts: 22 | Hi there, this is my first post although I have been reading others for a while and found them very useful.
My background - I am 30, female, Irish, but living in Luxembourg since 2001. I had tongue cancer last year.
I was very relieved to find this site a few months back as it explains everything clearly in english. As many of the healthcare professionals I am dealing with communicate with me through french (one of the working languages here in Luxembourg but not my first language), every now and then I get a little confused as to what exactly is going on/what the exact terms are for the treatment/condition. It also proved more than a bit awkward after the initial surgery when I had difficulty speaking and did not have a great level of french. Thankfully my french has improved in leaps and bounds since then, especially my medical vocabulary!
My treatment story: In Jan 06 I had a small cancer on the left side of the tongue and had 1/3 of the tongue removed, plus nodes from both sides of the neck which luckily turned out to be negative. I had the surgery here in Luxembourg as the facilities are great, medical care is heavily subsidised by the state and I didn't have any private health insurance (I do now!)
After some worrying results from follow up checks I was advised to have brachitherapy (can't spell it but means radioactive implants in the tongue), which I had for a week in France in April 06. Apart from the nasty initial reaction and recovery period (2 months), all was well and I went back to work.
I then developed another ulcer in the same place in November 06. This was the lowest point for me as I had to wait a few weeks for a second opinion, some tests and finally confirmation of what it was. I became quite stressed as I had a good idea of what I might have to go through if it were cancerous. It was definitely a case of knowing too much!
Luckily it was only a normal ulcer that couldn't heal itself, so now I am having HBO treatment. I am at session 15 of 50 to 60. I can see some improvement already, and am very pleased to have a treatment that doesn't make me feel ill.
My question is about numbness in the neck after surgery. At the moment I have very little feeling between the two scar lines (most of the front of my throat is numb). I know its a very small issue ideed but I was wondering if anyone knows if it improve further or will it stay like this? My doctor seems to think its as good as its going to get.
SCC of the left lateral border of the tongue.Partial glossectomy multiple nodes removed 01/06, T2/N0/M0.1 week Brachytherapy 04/06.Modified Neck dissection 1 node 06/06,negative. New ulcer 11/06,non cancerous, HBO treatment 01/07 to 03/07. 2007-2008 had speech therapy and voice training.OK now!
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#22015 01-25-2007 04:10 AM | Joined: Sep 2005 Posts: 325 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2005 Posts: 325 | Redser, We are on the same time frame, apparently, I am facing my recurrence from my first tongue surgery a year ago. So I am only a year out, as you are. My neck is slowly beginning to regain feeling, but is still numb in spots, and is "tingly" up under the ear and along the jawline on the surgical side. I understand that it continues to improve as the years go by and the nerve endings re-knit, but as to whether it is ever back to where it was before surgery? Don't know that one!
Andrea
SCC L lat tongue,Dx 9/15/05 T1N0MX L MND and L lateral hemiglossectomy 10/03/05. Recurrence 11/15/06 2nd surgery 12/04/06 hemiglossectomy 3rd surgery 01/15/07 tonsillectomy Radiation 01/25/07 to 03/08/07 3-D/CRT X 30
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#22016 01-25-2007 04:15 AM | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Jul 2006 Posts: 446 | Irish, welcome. Glad you found this place. It sounds like you've had quite an ordeal in the last short while.
I had my surgery this past June, and the Doctors are confident that the numbness that I have from the neck dissection is permanent. I wouldn't expect a big improvment, although you may see some. It's impossible to perform surgery without some degree of superficial nerve damage,and that's just part of the whole experience Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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#22017 01-25-2007 04:53 AM | Joined: Aug 2006 Posts: 77 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2006 Posts: 77 | My docs told me that the neck numbness was likely permanent, too.
Clint
Age 46; SCC BOT T3N1M0l dx 9/06 Cisplatin x3; radiation x42 Completed tx 10/31; Selective neck dissection 12/06
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#22018 01-25-2007 06:25 AM | Joined: Jan 2007 Posts: 108 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Jan 2007 Posts: 108 | Hi Redser,
I have a nice hockey stick scar on my neck from just below the ear which curves down below my jaw on the right side. It took a little over a year for the numbness and tingling to go away. Every once in a while it returns but is not permanent for me.
My doctor told me alot of how numb I would be depended on how they had to move the nerves around during the modified neck disection to remove the lymph nodes, etc. Obviously, my doctor was very careful and my body adapted quite well since it is not permanet. As usual though, your milage may very since we are all very different.
Jim
T3N2aM0 SCC right oral tongue. Partial Glosectomy, Modified Neck disection for 1 Lymph Node. Dec. 2002. 35 IMRT 2003.
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#22019 01-25-2007 06:53 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Eilish,
It's hard to know for sure whether more feeling will come back (as you can see from some of the previous posts). There are some similarities between your diagnosis and treatment and what I had (although I had 34 conventional radiation treatments in between surgery and brachytherapy).
I can't remember for sure how long it took for the numbness and tingling to go away in my neck -- I do know it was a matter of years, not months. However, I did get to the point where ALL of the sensation returned in my neck and jaw area. Today when I feel anywhere around my scar, it is no different than what it was years ago pre-surgery.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#22020 01-25-2007 07:15 AM | Joined: May 2004 Posts: 218 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2004 Posts: 218 | Hi All,
My jaw is still numb. I am just about 4 years out!
Sure am glad to be alive!
Take it easy.
Peace and love Robert
SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04. 41 Years Old At Diagnosis
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#22021 01-25-2007 02:06 PM | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | I can't address neck surgery, but I did have hernia surgery in the '60s during which they apparently severed a nerve in my abdomen/hip, leaving a rectangular area of about six square inches on my hip without feeling -- I don't recall how many years it took, but maybe ten years later, I noticed I had regained feeling in the affected area.
Also, some years ago I managed to pour some burning gasoline on my leg and ankle (Long story but for the record, I do NOT recommend this to anyone for any reason <grinz>) and it affected my ankle -- If I remained standing for any length of time, I would get an unpleasant tingling in the area -- Again, after 6-8 years, I noticed that the nerves or whatever had appeared to recover.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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#22022 01-25-2007 03:45 PM | Joined: Aug 2006 Posts: 294 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2006 Posts: 294 | It is strange how we are all told different results to expect by the Docs for essentially the same problems. I had right side neck dissection on 9/20/06 as part of my treatment and have a 3" scar that starts just below my right ear and runs along jaw line toward the throat. I still have numbness in the immediate area and my ENT who did the surgery says the numbness can last for "up to a year". The only time I deal with it is when shaving and is quite a freaky sensation.
Bill D.
Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
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#22023 01-25-2007 05:12 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Hi Redser,
Sorry you had to go through this, especailly at such a young age.
I'm almost 2 years out from similar surgery to yours, but only one side of the neck was dissected. I too, feel that permanently being numb is a small price to pay for being alive.
Count your blessings and good luck and good health.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#22024 01-25-2007 07:35 PM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | I am one year out and my surgeon said to "give it a year." I am still numb in most of the area of my ND, but I swear that it seems to be continuing to slowly get better. I am pretty well accustomed to it now. The feeling in my chin is perfectly normal now, though my jawline is a little numb. I don't even notice it. It was my ear that bothered me tremendously, and it is 95% normal now. It had felt like it was the size of an elephant's ear and made of cardboard. It was numb, but it hurt to touch it....very odd! I also had numbness in my lips that has, thankfully, gone away. A girl needs to kiss and wear lipstick, both of which were difficult!!
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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#22025 01-26-2007 02:24 AM | Joined: Jun 2006 Posts: 22 Member | OP Member Joined: Jun 2006 Posts: 22 | Thanks everyone for your responses.
I do realise its only a small thing, and I am very grateful not to have major problems, I was just interested to hear other people's experiences.
I am also hopeful that the HBO treatment for my tongue will also work to speed up recovery in the neck area. Will keep you posted as to results.
Eilish
SCC of the left lateral border of the tongue.Partial glossectomy multiple nodes removed 01/06, T2/N0/M0.1 week Brachytherapy 04/06.Modified Neck dissection 1 node 06/06,negative. New ulcer 11/06,non cancerous, HBO treatment 01/07 to 03/07. 2007-2008 had speech therapy and voice training.OK now!
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#22026 01-26-2007 08:24 AM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | There are no small things or unimportant questions. Yes, the issue of numbness in not life-threatening, but it is a quality-or-life issue and you should not apologize for asking about it. Keep asking!
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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