#21837 12-29-2006 06:56 AM | Joined: Dec 2006 Posts: 21 Member | OP Member Joined: Dec 2006 Posts: 21 | I have only known for 2 weeks that I have cancer of my tongue. The ct scan shows nothing in the neck, so that is a good thing. I have had most of my lower teeth removed in preparation for radiation treatment which will begin soon. I am already in pain - the ulcers on my tongue are very painful. I can't imagine what is to come with the radiation. I try to keep calm, but it is really hard.
I never smoked, don't drink, and there is no cancer in my family, so this is a complete shock.
Squamous Cell Carcinoma of tongue, stage II due to size >3mm, nothing seen in neck on CT scan. Radiation started in Jan 07. Completed 2/26/07. Recurrance confirmed 8/07.
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#21838 12-29-2006 07:54 AM | Joined: Oct 2006 Posts: 248 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2006 Posts: 248 | Betty I'm so sorry to hear about your cancer. Time and information will ease your fears. There are a lot of people going through what you will soon be going thru. They are a great support for you with tons of information as well. I know you don't feel great about your situation but if you don't have any positive neck nodes that is fantastic news. The radiation will not be easy but you will get thru it. Ask lots of questions and you'll be amazed at the well wishes from people at this site helping you along each step of the way. Wishing you well Betty. Mark D.
Mark D. Stage 3 Nasopharynx dx10/99 T2N3M0 40xrad 2x Cisplatin 5FU. acute leuk 1998.
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#21839 12-29-2006 08:18 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Betty,
I'm sorry you found yourself in this situation, but you've come to a place with lots of information about oral cancer and support from people who have been through it. Like you, many of us also didn't seem to fit the "typical" risk profile for this disease and were stunned to find out we had it. Can you give us some more background about what you know so far -- where on the tongue is the cancer located, what kinds of tests you've had, whether you're being treated at a major cancer center, etc.?
Also, can you clarify why they pulled your teeth? Were they teeth with existing problems that needed to be pulled anyway? It's usually not necessary to pull otherwise healthy teeth "in anticipation" of radiation.
Regarding the pain -- if you have an experienced head and neck cancer team, they should be doing everything possible to keep your pain under control from now all the way through your treatment.
Please don't hesitate to post your questions and concerns here as you go along. Also, try to make use of the enormous amount of information about oral cancer that can be found elsewhere on this site -- it can help you be better prepared for the next few months to come.
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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#21840 12-29-2006 09:09 AM | Joined: Sep 2005 Posts: 325 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2005 Posts: 325 | Betty, I am so sorry you need to be here, but glad you found this site. If you go to the search engine on the forum pages, you can type in words or phrases such as "tongue", "radiation", "coping", just about anything, and you will find people who have been through what you are going through, have posted their experiences, tips and hints for making the journey easier. It's a great source of comfort to KNOW.....and this is where you can get that comfort. 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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#21841 12-29-2006 10:03 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 | Betty,
Like Cathy said, please provide us with as much info about your cancer and treatment so that we can give you the best possible advice. It's easier to add it once below your signature so that every time you post a question or respond to a post it will be there to provide a more complete picture of you.
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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#21842 12-29-2006 02:36 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 | Betty, Hello. It's important that you let us know more about you so we can communicate better. There are a bunch of folks here who will stand by you during treatment. You won't be alone. You gotta be really tough, but you can get through this. Keep talking to us. 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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#21843 12-29-2006 04:47 PM | Joined: Sep 2006 Posts: 75 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Sep 2006 Posts: 75 | Betty You hang in there. Its not and easy road, but with todays treatments, you will be in good hands. Keep coming back to this site it will help you thru some of your fears.
Tongue Cancer, stage 4, spread to neck/ Radical neck, 3 chemos, 33 radiation. 5-18-2005
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#21844 12-29-2006 06:10 PM | Joined: Aug 2006 Posts: 77 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2006 Posts: 77 | Betty,
My sense is that if you aren't scared, you don't understand what you're up against. Being scared is a perfectlynormal way to feel. Use the fear to motivate you to get educated - that's the best wayto put this energy to good use.
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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#21845 12-30-2006 05:44 PM | Joined: Jul 2006 Posts: 109 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Jul 2006 Posts: 109 | Betty, Take a deep breath...and breathe. I know just how you feel, i was really scared too at first, READ,READ,and READ more on here, read everyones post, it really does help alot, first you learn you are not alone in this, second you will meet great people, that will help you get through this scarey time. As far as the mouth sores, i used "DGL"(deglycyrrhizinated licorice root extract) got it at a health food store, dissolved a tablet and applied it to the sore, within a day or so, the sore was gone!!! Any other thing you need help on, just ask, everyone will be able to help and let you know what worked for them. YOU WILL GET THROUGH THIS, some days will be harded than the others, but just remember to take one day at a time and READ!!! | | |
#21846 12-31-2006 03:32 PM | Joined: Dec 2006 Posts: 21 Member | OP Member Joined: Dec 2006 Posts: 21 | Thanks to all of you for taking time to respond! It does help to know that others have gone through similar situations. I know I will fight with all I have, and am getting as much info as I can. The internet is such a wonderful thing.
Squamous Cell Carcinoma of tongue, stage II due to size >3mm, nothing seen in neck on CT scan. Radiation started in Jan 07. Completed 2/26/07. Recurrance confirmed 8/07.
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#21847 01-01-2007 06:01 AM | Joined: Dec 2006 Posts: 5 Member | Member Joined: Dec 2006 Posts: 5 | Dear Betty,
as someone who has just completed a very tough radiation treatment 6 weeks ago I can tell you that I was just as afraid as you are, but I made it through and you will, too. And over time your vague fears will be replaced by rational concerns which will lead you to making the best possible choices after gathering all the relevant information.
And that in turn will give you the best possible chances to cure it.
That you have found this site so early after the chock of diagnosis is a very good and even lucky thing. I just found the site yesterday and would certainly have benefited a lot from finding it earlier.
2007 is the year of your cure !
Abraham
age 58, father of four, base of tongue cancer T2,N0,M0 diagnosed in Aug 2006 in Berlin, radiation completed Nov 2006 at MD Anderson, first check-up showed no current cancer to be found. :-)Keeping fingers (and everything else) crossed at all times !.
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#21848 01-01-2007 10:07 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 | Betty,
I am e mailing a response re what to expect from rad Tx I recently sent another poster. I didn't hold back so if you don't want frankness, delete it before reading.
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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#21849 01-03-2007 01:46 PM | Joined: Jan 2007 Posts: 12 Member | Member Joined: Jan 2007 Posts: 12 | Betty: Sounds familiar. Diagnosis was the same for me BUT the good doctor chose to surgically remove part of my tongue and then , ta the same time , did a radical whatever ot my neck to assure the lymphnodes aren't involved. He says that all was clear BUT I am to see him on 1/19. Candidly I believe he is now oging to introduce the Radiation route
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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#21850 01-04-2007 03:42 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,
Where are you being treated? Perhaps you need a 2nd or 3rd opinion. I saw 4 cancer docs before I decided what I wanted done to my body. Remember it is your body and not all cancer docs think alike. Going to a cancer institute is usually better.
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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#21851 01-06-2007 04:23 AM | Joined: Jan 2007 Posts: 3 Member | Member Joined: Jan 2007 Posts: 3 | Betty, I found out on 12/19/06 that I had cancer. I had lymph nodes removed at that time and they were found to be squamous carcinoma. So far, my doctors have been unable to find the primary source. Like you, I am afraid of the unknown aspects but I feel that the more I learn and begin to accept my near future, the more the fear is replaced with participation. I know it is going to be tough but I also know that early detected cancer of the Head/Neck type are 80-90% curable.
"life is not a rehearsal"
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#21852 01-06-2007 04:35 AM | Joined: Oct 2006 Posts: 248 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2006 Posts: 248 | Frazitex, It took 6 weeks from the day they removed a lymph node and determined where my primsry site was. They took out my tonsils and adenoids as well as doing blind biopsies of suspected sites. Yhey found my primary but in a lot of instances they don't find the primary. Treatment is similar and I believe outcomes are as well. Sorry you have to face this.
Mark D. Stage 3 Nasopharynx dx10/99 T2N3M0 40xrad 2x Cisplatin 5FU. acute leuk 1998.
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