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Joined: Jan 2008
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Hi Ron...
Welcome. This site has been a blessing for me. Any questions I have had someone has answered or I have found the answer by searching the site. It has actually kept my sanity the last week or so. I too found a lump in my neck, ignored it for about 1 yr before I thought i should actually have it looked at.At 37 yrs old and a newlywed what could seriously be the problem!! (UGH!!) When I finally did go to the doctor the CAT SCAN showed actually 3 enlarged lymph nodes. I had 2 inconclusive biopsies done on the largest and a wonderful surgeon that insisted I take it out even though it showed no dangerous cells. 2 months after the biopsies (7/9/07) I had it removed from my neck. 10 days later the doc dropped a bomb on our world telling us it was cancerous and it definetely was not the primary. An MRI and a PET scan later cancer did not show anywhere in my body. My aggressive surgeon knew better and eventually found the primary source at the base of my tongue. However it was not the more common SCC it was mucoepidermoid carcinoma which happens to have very rare occurences in the tongue. 5 months after the 1st surgery I had my second which entailed a 3 week stay in the hospital entailing a neck dissection with 11 nodes removed, jaw split, and a sizable amount of cancer removed from the base of my tongue. Before we agreed to the second surgery my doc encouraged me to seek a second opinion which I did (plus a third). They all had the same answer that surgery plus radiation would be the best protocol to beat this. So that what we did on 12/11/07. Spent Christmas and New Years in the hospital. Now withihn the next 2 weeks I'm to start radiation which scares the hell out of me, but I know I AM STRONGER than this disease and I will beat it and move on with the life with my husband of 1 year. (thank god for him)! If I could share 1 piece of advice in my short experience with this disease it would be to lean on those you love for support and understanding. Take advantage of all the offers for help/assistance from family/friends or whoever. No one should have to battle this alone if they do not have to. Let the support in whether its from this forum, from friends/family or from the medical team you will have. It will help you through this. And ask away your questions or state your fears someone has been there before you and will help you through this. Stay strong and keep in touch..
Christne D


Diagnosed with mucoepidermoid carcinoma right side base of tongue. Removed growth from tongue as well as modified neck dissection with mandible split on 12/11/07 with 12 nodes removed. 2 cancerous. Scheduled to start Rx 2/12/08.Finished 3/24/08 30 treatments. no chemo
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Ron47 Offline OP
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Thank you! Everyone! I feel relieved to find so many helpful people. I think this is good for me, to hear from all of you! I'm here with you to ride out this battle. Again, Thanks


Age 47, Right tonsil removed 1/18/08, large mass in right side of neck. Both have been diagnosed SCC Stage IV, on 1/24/08. Right radical neck dissection and left tonsil removal 2/8/08
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Hi Ron,

I too wish to welcome you and say hello. You will find lots of information here to help you through your journey. Try and take one step at a time. This Journey is long but you will get through it.
You will learn the true meaning of "WAITING" because you will always be waiting for something. grin
So welcome Ron and good luck on your scans, and surgery to come.
Take care,
Diane


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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Hi Ron,

Wanted you to know I'm rooting for you and will be following your posts! Good luck with your scan on Friday.

I want to echo some things from DavidCPA's post. My husband's ENT wanted to do a neck dissection within days of diagnosis. At the CCC we went to, the surgeon, RO and MO consulted and determined that chemo and rad were going to be enough. I know every person is different, but I'm curious if the decision to do surgery is coming from a cancer center or a stand-alone ENT?

I'm concerned because someone is telling you that surgery is warranted and you don't have your PET scan done yet.


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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Hi Ron,
Just keep putting one foot in front of the other like your determined little man you will be OK.
Wishing you an easy time.
Malka


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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Ron,
My surgery was on the left lateral of my tongue, and originally my ENT had scheduled that surgery plus a ND on the same side, but when he got to the tonge mass the margins were so well defined that he consulted with the RO while I was still under. They decided to opt out on the ND, and just go with radiation. So... where do we go from here? I can only hope that the right decision was made; granted 1/3 of my tongue is gone, and I'm dealing with radiation recuperation, but I was blessed (?) in that I didn't have to have the ND. According to how things pan out in the future I will know whether or not (they) we did the right thing. My follow up PET on the 18th was clear, which was most excellent news, and everything is going as predicted... so, you see, for everyone it's different... you get to chart your own path and share as well. God bless you, and good luck... we are here.


John - Proud to be here...
Hemiglossectomy 08/02/07, 4 lower molars extracted prior to 6 weeks IMRT 09/10/07-10/19/07, SCC w/met to L neck lymph nodes, rad only, no ND. PEG 10/26/07-02/05/08.
"We're all in the same boat in a stormy sea, therefore we owe one another a terrible loyalty."
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