#18205 07-08-2005 03:06 AM | Joined: Jun 2005 Posts: 25 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jun 2005 Posts: 25 | Hi, my name is Barry and I | | |
#18206 07-08-2005 03:34 AM | Joined: Apr 2005 Posts: 80 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Apr 2005 Posts: 80 | Barry,
So sorry you are joining our group, but this is definitely the place to come for answers and support!
I can only say we have many many +5 year survivors on this site. At 66, you are still a young man and have the added bonus of being healthy! Each of us has to make the decision about how to fight and how hard to fight. However, I think you will hear from others who will reply, that their lives, although changed, are well worth the battle.
Best wishes in your journey. You will find many friends here.
Jennifer
Jennifer
Stage II (T2N0M0) SCC diag 4/21/05; partial glossectomy & selective neck dissection (good margins and lymyph nodes negative), jaw split, 1/3 of tongue removed, free flap from left forearm - 5/23/05; 42 years old at diagnosis
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#18207 07-08-2005 03:56 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Barry-
Sounds like you are where I was over 3 years ago and I am still cancer free and living with the side effects of treatment have not kept me from living a very full life. My tonsils came out at age 15 only to have one grow back and become stage 4 cancer with 3 lymph nodes involved. I too did not smoke and only socially drank. My advice is be as aggressive as you can be with treatment the first go around. You might not get a second chance!
I had the regrown tonsil removed, modified neck disection, radiation and concurrent chemo. I survived that treatment with most of the messy side effects and you can too!! I had the choice to have a more drastic surgery to redo the throat and sincerely wish I had gone for the gold and been more aggressive. It would have given me much more peace from the fear of recurrence.
It is a hard journey, but you won't be alone and there is a wealth of encouragement and survival tips on this forum! - 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 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#18208 07-08-2005 04:03 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Barry-
Just one note on the probably quality of life after this slash/burn/poison treatment. Six months after treatment I was back to work part time, full time by eight months. One year later I was kayaking on Puget Sound, snorkeling in Hawaii, camping with my grandchildren and teaching my 8 year old tennis! And I no longer carry a water bottle around and most food tastes just great! You have a lot of life to live yet...go for the gold! - 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 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#18209 07-08-2005 04:21 AM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2005 Posts: 497 | Barry forget the "stage" and go for win! This is my third week of radiation and my throat is killing me but I know the little devils is screaming and dying in there. I met a woman at the rad center whose husband is recieving treatments. She had stage 3 breast cancer and survived so far for 25 years! They gave her 5 years.
We don't know how long we have. We have til our gig is up no matter if we have cancer or fall in the shower stall. I will be praying for you to decide. The sooner you do the better. I am 60 this year by the way and I am a warrior. Well maybe a "old" warrior. LOL Keep coming back and posting. It helps so much to know you are not alone.
Blessings and guidance,
Barbara~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#18210 07-08-2005 08:29 AM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Dec 2003 Posts: 116 | Barry
The biggest learning I have had from this is anyone can beat the odds, the odds are only an average, get the best doctors which it seems you had with the places you've been, take the most aggressive treatment (you don't want to take any chances). The treatment process is tough but not unbearable. The side effects usually a minimal and in my case and others are hardly noticable or you get use to them. Your are taking the right approach to get several options and listen to others who have been through it which I learned more and was reasurred more from the past advocates who have been through it. Like the old saying you can't beat experience.
SCC R-Tonsil T2 NO MO Dec 2003. Completed IMRT Radiation only to tonsils(72Gy) and neck(55Gy)March 04. Detected at age 50.
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#18211 07-08-2005 10:31 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Hello Barry and welcome ,
My husband had stage 4 Base of tongue . You are right the treatment is horrendous, but absolutely worth it!
He is now back to his normal, annoying, old self, and I have no hesitation in giving him as hard a time as he deserves!
Just kidding, but I know how you feel..... scared silly.
There is a light at the end of this rotten old tunnel and we can help you through it.
Take Care
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#18212 07-09-2005 08:41 AM | Joined: Jun 2005 Posts: 25 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jun 2005 Posts: 25 | Many thanks for all your words of support and encouragement. They have been very helpful. I will keep posting to the chat-line on my progress. Next step is tuesday when I meet with both medical and radiation oncologists.
Cheers
Barry | | |
#18213 07-10-2005 03:46 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 | Barry,
Good luck on Tuesday. My thoughts a prayers will be with you.
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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#18214 07-10-2005 03:59 PM | Joined: Jun 2005 Posts: 349 Likes: 2 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2005 Posts: 349 Likes: 2 | Barry:
I just wanted to let you know that I had the "Modified Radical Neck Dissection" with "Radical Tonsillectomy" a week and 3 days ago...
It's a BIG DEAL..>But, not the end of the world.
Today, I am up and fucntioning 99% of my presurgery function.
It was painful for a few days, but good pre-surgical discussions with your ENT will prevent that better than mine did.
I am in Houston tonight to discuss radiation and chemotherapies tomorrow with MD ANDERSON.
Don't give up before you even start man!
The statistics you are being quoted don't take several things into consideration (not the least of which you are obviously proactive and interested in learning about the treament as evidenced by the fact that you posted on this forum), so there are several things in your favor we don't even know yet!
Relax. You'll get through this...
Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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