#24860 11-14-2007 04:25 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Paul,loats of good advice above AND one of the most important is to get your wife on this site with you, so she has access to a full range of information and a way to communicate with other caregivers as well. Best luck. Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#24861 11-15-2007 09:58 AM | Joined: Sep 2007 Posts: 61 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2007 Posts: 61 | Paul,
Glad to hear that you will be going to Dana Farber, wonderful people there. I think that you will be very happy with Dr. Norris, he is a straight shooter and makes himself very available to his patients. When my friend met him she knew she was in the right place. They will give you a LOT of information on your first visit, so it would probably be helpful to have one or two other people with you- just to help you digest the information (and an extra brain, or two, to remember it all).
I wish you all the best, keep in touch.
Liz
CG to friend Mary. SCC Stage IV-A of rt. tonsil, mets. to lymph node on rt. DX 06/07,tonsillectomy 08/07, Chemo Cisplatin, Taxotere and 5FU X3 cycles; RAD completed 1/20/08 RND scheduled for 3/08. 54yr.old, NS, social drinker.
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#24862 11-16-2007 04:02 AM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Hi Paul - Sounds like you will be in very good hands at Dana Farber. My son had a pain on the right side of his tongue which he put off doing something about for a long time. His treatment ended almost a year ago and he is doing just fine, now! As a caregiver to my son, (also named Paul) I don't know how we would have gotten thru it without OCF and the wonderful and compassionate people we found here. Hang in there and let us know what's happening.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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#24863 11-20-2007 02:37 AM | Joined: Nov 2007 Posts: 45 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Nov 2007 Posts: 45 | Welcome Paul...
Stay positive! The people on here are wonderful supporters. I am currently waiting on results of my PET scan. I have found this site very helpful in coping with the unknown.
The veterans here continue to help all of us to fight through the anxiety and work towards a cure for this awful disease.
South Louisiana - Cancerous growth removed from lip 10/07. Lesion removal & biopsy done 11/7/07 - no signs of cancer in area. PET scan done. No signs of cancer in Head & neck. Something in chest. CT to be done 12/20/07
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#24864 11-20-2007 04:25 AM | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hi Paul!
I am a tongue cancer survivor too. So sorry to hear of your recent news. I'm glad you are getting in to see someone early. I also was misdiagnosed for several months. Please feel free to PM me with any questions you have.Thinking of you.
Sincerely,
Miss Kate
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
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#24865 11-20-2007 02:48 PM | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Paul,, I am a tongue cancer survivor too. The people on here talked me into a 2nd opinion and I heard way better news at The Ohio State James Comprehensive Cancer Center than I did at the 1st place I went. I was just going to let it run it's course and whatever happen would happen. These nice supporative people talked me into the 2nd opinion and I'm alive and kickin.. LOL but not kickin too high yet. I go Mon the 26th for another check up. I know you will beat this thing and just listen to the people on here.. They are great. Jim
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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#24866 11-28-2007 08:14 AM | Joined: Nov 2007 Posts: 24 Member | | OP Member
Joined: Nov 2007 Posts: 24 | Hello,
I met with Dr Norris and 3 other physician's at Dana Farber on Nov. 20th. Dr. Norris was very positive, and gave a lot of encouragement in the treatment of the cancer. He said the location is in the middle of the left side of my tongue and a little towards the floor of my mouth. There may be 1 lymph node affected, so tehy are going to schedule me for a PET scan to cross reference with the CT scan I had.
Next week (Dec 5th and 6th) I am schedule for pre-op visits with the anesthesiologist, Dr. Norris, and a plastic surgeon. The surgery is scheduled for Dec. 17th. Dr. Norris said the location on my tongue was a positive, as it is not too far back towards the base to ruin my ability to swallow, and it is not too far towards the front to ruin my speech. The surgery he believed would be about 10 hours long. They will remove the cancerous area, and then a plastic surgeon, will take some skin from my left forearm, and graft it into the missing location of my tongue. A PEG tube will be inserted while I am in surgery, and I will most likely be in the ICU for the first few days. If my breathing can't not be controlled by tubes from my nose, they may have to do a tracheotomy (sp?), which they would reverse in a couple days.
Dr. Norris believes I will be at Brigham & Women's for about 8 - 14 days. After a biopsy is done on the removed portion of my tongue, they will decide the amount of radiation I will need, and possibly a low dose of chemo to assist the radiation.
My family and friends have really been supportive, and my in-laws are going to look after my son, while I am in the hospital. My wife has been very strong, and positive. I am holding up ok, but still have my brief moments of breaking down. I have no fear of the surgery and treatment, as it necessary to seemy son grow up.
Paul a.k.a novalty
Age 27: Diagnosed 11/1/07 with Oral cancer localized in the left side of my tongue & 1 lymph node. Upper Neck Disection Surgery 12/17/07, removed left side of tongue and a few lymph nodes. Post surgery treatment: 30 days Radiation, 4 Treatments of Cisplatin. Completed treatments 3/27/08.
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#24867 11-28-2007 08:28 AM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Paul
You have a great attitude !! and it sounds pretty positive the things the Dr told you . Dana farber is a GREAT hospital !!! Please know that we are all thinking of you !! and your family as well !
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#24868 11-30-2007 06:49 AM | Joined: Jun 2006 Posts: 22 Member | | Member
Joined: Jun 2006 Posts: 22 | Hi Paul,
Glad to hear you have a plan of action agreed with the hospital.
I was 29 when dignosed, I had treatment over a 6 month period and then some extra to help the tongue heal better.
Now its exactly two years since the whole thing started and I am happy to say I feel pretty normal again. I had no recurrences. I hope you have a similar or better experience!
Keep us posted
Redser
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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#24869 11-30-2007 11:53 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Paul, Keep that good attitude going. I am a tongue cancer survivor of 5 years, had two lymph nodes positive. Sounds like your treatment will be very similar to mine....if I can be of any help please pm me....I can give you more details.....Take Care, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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