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#15219 04-26-2004 03:54 AM
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Cathy G Offline OP
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Hello all. This is my first post -- I found the site a week or so ago while looking for some new cancer-related information for someone I know who is being treated for lower gum SCC.

Today is the 15-year anniversary of my surgery for SCC of the tongue (diagnosed as T2N0M0). Surgery was a partial glossectomy with neck dissection, followed by 34 radiation treatments and then a radiation implant. Diagnosis was a long and frustrating process back then, as I kept hearing from various doctors and dentists that the persistent spot on my tongue was nothing to worry about since I had never smoked. Fortunately, I finally connected with an oral surgeon who recognized the extent of the problem, performed a biopsy, and immediately moved my case into the hands of a team of oncologists. Thank God I have now been cancer free for 15 years.

The biggest long term effect of radiation has been dry mouth (not surprisingly). I was in clinical trials for oral pilocarpine (Salagen) a couple of years after my treatment, and it has been effective enough for me that I have continued to take it daily ever since. While it does not get me back to "normal" salivary function, it is a definite improvement for a few hours at a time.

My oncologist periodically does thyroid tests but thus far I have not reached a hypothyroid stage requiring medication.

Certainly the months of treatment and the ensuing months of healing were sometimes excruciating and debilitating, but I'm thankful that life in many ways since then has been far better than I could have anticipated.

I'm glad to see that there is now a growing awareness of the specific needs and challenges of oral cancer. Keep up the good work.


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#15220 04-26-2004 04:30 AM
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Hi Cathy,
Thank you so much for writing on these boards, we so need to hear from people that have survived and gone on to live the good life. I am one year away from my surgery and 9 months out from radiation......................and I intend to make it to that 15 year anniversary also............and beyond. I have always believed that I will be an adorable old woman (my grandmother is so cute) and I am determined to prove it!!
Again, thank you Cathy and keep in touch with us.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#15221 04-26-2004 04:50 AM
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Cathy-

It is really an inspiration to hear from a survivor at the 15 year goal!! Hope you can make it to our first get together this October in Los Vegas! It should be quite a celebration of life!!! Just came to the 2 year marker myself and happy for every day that comes! - Kris


SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Every day is still a gift :-)
#15222 04-26-2004 05:04 AM
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Cathy,thanks so very much for that inspiring message...Sure made my day!!!!!!!!! God Bless You and may you have many, many more years cancer free!!!!!!!!!! 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---
#15223 04-26-2004 06:36 AM
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God Bless you and your post,Wonderful


JOAN
#15224 04-26-2004 07:03 AM
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H Cathy, thanks for sharing this with us.. great to have good news here.. Gives us a real warm feeling..now you have found us don't dissappear...
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
#15225 04-26-2004 07:21 AM
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Hi Cathy,
and welcome. It is so refreshing to read a post on the victorious side of the spectrum - we need more of these! You are truly a pioneer. It is great that you are doing so well. You were very wise to be persistent in obtaining an accurate diagnosis.

Keep coming back!


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#15226 04-26-2004 12:47 PM
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cool
Fantastic Cathy, thanks for sharing such good news. Helen


RHTonsil SCC Stage IV tx completed May 03
#15227 04-26-2004 12:57 PM
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hi Cathy,

cheers for you! what an inspiration you are.

Your profile says you like 'Music, gardening, photography.' fine ways to spend your time.
you cancer kicker.

cu,
larryb

#15228 04-26-2004 01:12 PM
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Hi Cathy, you are really an encouraging figure for everyone here. I am approaching my 3rd year anniversary and have confidence to reach my 15th. One point of interest and hope you can elaborate. It is the clinical trial for oral pilocarpine after treatment.I never thought our mouth dryness can be improved with treatment after radiation. Your post gives me hope since so far, the most frustrating problem with me is the very dry mouth. Other than that, I am just doing great.

Karen


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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