#21877 01-03-2007 01:41 PM | Joined: Jan 2007 Posts: 12 Member | OP  Member
Joined: Jan 2007 Posts: 12 | New ot all of this. Diagnosed with Tongue cancer 10/21/06, operated on 11/21/06. Removed part of my tongue and did a radical whatever to my neck (lymphnodes). Dr says all is well, but I expect radiation is next on the agenda. Seeing him (the Doctor) on 1/19/07. Understand this is potentially fatal, and candidly am scared
65yo DX 10/14/06 SCC tongue StgII. 11/21/06 Partial Glossectomy & radical Neck dissection. TX continues 10/07 recurrence 3 mos rad supplemented by 3 Chemo sessions
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#21878 01-03-2007 02:32 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 | Dear RCN88411 {could we have a shorter name tag?] I'm NOT being flippant-but life is fatal.What we do in between being born and being gone iswhat is important.
If you have to do the radiation, there is so much info here on what to expect and how to deal with it--and there are alot of folks who will help you get through it. How are you coping with the tongue surgery and neck dissection? Please get us up to speed on your progress to date. This cancer is NOT always fatal so set your sights on a complete recovery and yes, being scared is a normal part of the process. Amy
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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#21879 01-03-2007 03:45 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 | Dear RCN,
As Amy said, being scared is normal. We'll help you get through this.
I see from your profile that you were classified as Stage II. I was a Stage I and had a partial glossectomy and a modified neck dissection. I did not have radiation or chemo. So till this point our treatment has been the same.
Where on the tongue was your cancer? Mine was on the side.
You did not mention if any of your nodes were positive. This is important to know.
Please don't hesitate to ask any questions here on the forum and be sure to check the SEARCH link at the top of this page and on the home page. You will be amazed as to how much information is here.
Good luck with your appointment on the 19th and keep us posted, even if you don't have any questions.
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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#21880 01-03-2007 04:12 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | RCN,
Welcome from another Massachusetts member. I was also a Stage II (over 17 years ago, when I was 39) -- had partial glossectomy and modified neck dissection, followed by radiation. As I understand it, radiation is not always necessary for Stage II cases, but in mine they felt it was strongly advisable because of some of the pathology results. While it was a tough few months, I haven't regretted doing everything possible at the time to go after this disease.
You'll find a great deal of support and helpful advice on this site, so try to make good use of the forum to post your questions and also check out the rest of the site, which has tons of information on oral cancer.
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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#21881 01-04-2007 01:55 AM | Joined: Sep 2006 Posts: 28 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2006 Posts: 28 | RCN,
My husband just finished radiation. He came through very well. Thanks to this site we knew what to expect and how to get through so keep visiting and updating.
Barbara,
CG to Tom SCC IV dx'd 8/06, r. tonsil, T2,N2,M0. Modified radical, 30 nodes removed 9/29/06. 6 weeks radiation and 3 weeks amifostine. Tx ended 12/13/06. No chemo. TNB, Tom and Barb, too.
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#21882 01-04-2007 03:36 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | RCN,
Radiation is tough but I have never heard of anyone on this site not surviving it. The standard rad today is IMRT ( Intensity Modulated Radiation Therapy)which is less harmful than its predessor re it's side effects. I completed my IMRT treatment 4 months ago and only have 2 remaining side effects but am otherwise completely back to my old self. Whenyou are ready to hear what to expect during your rad just post that question but be as specific as you can to what Tx you will recieving. You will find this site extremely helpful and useful in your battle with your cancer like we all have.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#21883 01-04-2007 07:54 AM | Joined: May 2006 Posts: 137 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2006 Posts: 137 | I think RCN means the cancer is potentially fatal. Yes it is, but so is life.  The entire treatment regimen for this disease is brutally miserable, but is of limited duration. Step by step, we all got through it and came out the other side. You can, and will, too.
dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
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#21884 01-05-2007 07:32 AM | Joined: Jan 2007 Posts: 12 Member | | OP Member
Joined: Jan 2007 Posts: 12 | No formal speech therapy, as on now. Daughter is in fact a speech and language therapist, so I am certain she will step in if needed. No problem with arm. Neck issues are the least problem at this point. Some limitation of movement, but again no big deal.
Stage 2 designation nwas because of tumor size,or so I was told.
Thanks again for your interest and support
65yo DX 10/14/06 SCC tongue StgII. 11/21/06 Partial Glossectomy & radical Neck dissection. TX continues 10/07 recurrence 3 mos rad supplemented by 3 Chemo sessions
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#21885 01-06-2007 04:16 AM | Joined: Jan 2007 Posts: 3 Member | | Member
Joined: Jan 2007 Posts: 3 | Dear RileyMc - Do you have any idea what percentage of people with our cancer have 'unknown primaries'? I am having my second surgery on Monday and I am wondering if they will actually find the primary source.
"life is not a rehearsal"
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#21886 01-13-2007 08:26 AM | Joined: May 2006 Posts: 137 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2006 Posts: 137 | Off the top of my head, 'unknown primaries' are somewhere around 5%, if I recall correctly.
dx 2/13/06. modified radical neck dissection 3/9/06 multiple biopsies of upper airway and direct laryngoscopy. 1 of 47 lymph nodes positive for metastatic undifferentiated carcinoma (lymphoepithelioma). Unknown primary. Finished radiation 5/24/06.
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