#16589 11-24-2004 06:07 PM | Joined: Nov 2004 Posts: 104 Gold Member (100+ posts) | OP  Gold Member (100+ posts)
Joined: Nov 2004 Posts: 104 | Hello to ALL.. I am a new member and a nearly 8 year survivor of SCC. WOW, do I wish that I had known about this wonderful network of loving and sharing, caring people earlier (ESPECIALLY nearly 8 years ago)  I was diagnosed Jan 15, 1997 with SCC unknown primary, metastasis to right side neck lymph node, Stage IV. CAT scan on Jan 16 showed probability of right tonsil primary, later confirmed by lab during surgery. Surgery on Jan 23, 1997, tonsilectomy right side and right side modified radical neck dissectomy. (Never could figure out what modified was supposed to mean  ) This followed by 7 weeks (35 treatments) with the rad beam (both sides of course). I discovered lump in my neck while shaving just before Christmas of '86. While not usually one to worry about this type of thing, I somehow KNEW that I had to have this checked out immediately. Luckily for me, after visiting two Dr.s ??? who thought that at 47 years of age I had come down with mononucleosis, I immediately changed primary care and the new Dr. sent me to an ENT the next day. This God sent Dr. took a needle biopsy and had the results in less than a week. Even though on the day of diagnosis, I knew by the looks on the faces of his staff that the news was not something that I wanted to hear, he and his nurse could not have been any more caring, concerned and helpful and informative. I still talk to him once a year (guess which date) even though I no longer live anywhere near his practice. Sorry for the long winded narrative, just want all of you to know how VERY important it is for ALL of you to be here for each other. There was a time when it had to toughed out nearly alone.  Jack | | |
#16590 11-24-2004 09:19 PM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Feb 2004 Posts: 261 | Hey Jack! We're almost neighbors! I grew up in T-town. Moved To Silverdale 10 yrs ago. Most of family, my side & my wifes, live in Tacoma, Puyallup, etc. Anyway, glad to meet you & Happy Turkey Day! It's quite a disease. I'm glad you're here! Erik
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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#16591 11-25-2004 03:45 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hey Jack, God Bless You!! Awesome that you are an eight year survivor!!! Have a great Turkey Day!! 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---
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#16592 11-25-2004 04:17 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Awesome story Jack. We are really grateful to have you here. Be sure you tell more about your story in my "survivor check in" thread. We can use all of the hope we can get around here.
Did you mean Christmas of '96?
Gary Allsebrook
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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)
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#16593 11-25-2004 11:41 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Welcome Jack,
Thanks for sharing your story with us. Your one of the longest survivor's I've heard about. Eight years is a long time. Do you have any restrictions or are you 100% ok?
Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#16594 11-25-2004 04:51 PM | Joined: Nov 2004 Posts: 104 Gold Member (100+ posts) | | OP Gold Member (100+ posts)
Joined: Nov 2004 Posts: 104 | Thanks Erik, Carol, Gary, Danny Boy for the welcome.
Had a very nice T Day and hope everyone here did also.
Yes, Gary I meant '96 not '86 and I will go to the survivor's thread.
Danny, I have absolutely no restrictions except the ones that I place on myself. That's not to say that I didn't and don't have some long term issues mostly resulting from the side effects of the radiation treatments. I must say that the BIGGEST have been psychological (major depression, etc,), but I can guarantee you that if either this forum had been around then or I had known about it, most of it would have been comparatively minor compared to what it was. I got into some chat rooms and other cancer forums but if you weren't dealing with the type of cancer that these forums were about, it was like "fugget about it" Never could understand that. I really hope that everyone here realizes how very important this sharing and caring from others really is.
Thanks Again
Jack
++++++++++
Dx 1/15/97 SCC Rt tonsil and lymph Stg IV, Surgery 1/23/97 tonsillectomy & mod. rad neck dissect right side, Radiation both sides 35 trtments | | |
#16595 11-26-2004 01:38 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Jack, glad to have you on the forum. You have quite a good story to tell and can contribute a lot to this forum for new folks as they join in our family. God bless you for helping others. Looks like I was just 7 years after you with the same type experience. I found mine while shaving also and normally ignore that type of thing but didn't this time. Thank God.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#16596 11-26-2004 07:19 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Jack,
so it was the lymph node that gave it away. My right tonsil cancer never got into the lymph nodes - it was just one humongous polypoid tumor that choked me in my sleep at night. Other than a little hoarseness and the sensation of something caught in my throat, basically asymptomatic.
I have one restriction now - to consciously not let unimportant things control my life, especially to interfere with my relationships. I was pretty good at choosing my battles before but the big c thing has fine tuned my priorities even more.
I have to agree that the forum is a unique thing. A lot of us met in Las Vegas a few months ago which changed everything for me - I now see peoples faces when I post - it's much more personal now. Seeing the member profile and photo book that Danny Boy put together was very moving, especially the persons who have passed this year. Everyday I wake up now is one of intense gratitude.
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)
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#16597 11-27-2004 03:38 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Welcome Jack
Nice to meet you, yes we are very lucky, that Brian Hill started this web site for us. I tell everyone who will listen ..if it had not been for these great folks I could not have made it through and, Pete, my husband`s journey would have been much tougher. The information they shared was a hundred times more valuable than any I could get from the medical professionals . Hang with us we need you!
Cheers
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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#16598 11-27-2004 06:35 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Very nice to meet you Jack! 8 years is great  We had the same DX.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#16599 11-28-2004 12:39 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Jack,
Welcome to the neighborhood! It is so awesome to meet you and so encouraging to hear 8 years as a survivor!
May you be blessed many ways and thanks for finding us. I look forward to hearing more from and about you.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#16600 11-29-2004 02:53 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Jack,
Welcome to OCF. You found out early on what many of us here have also discovered -- if your doctor can't readily identify and treat an abnormality in your mouth, it's probably time to find another doctor. You're also right about how different it was to go through this experience with no internet resources available -- information about oral cancer was pretty scarce (a couple of little pamphlets in the hospital waiting room).
You mentioned that you still talk to your doctor once a year but don't live near him anymore. Do you also have regular in-person checkups with an ENT or oral surgeon who knows about your history? Once you've been through this battle, it's really important to have an ongoing medical team who can monitor your situation year after year and look for any unusual developments. Radiation is often referred to here as the "gift that keeps on giving" and some of the long-term effects take years to show up.
Good luck -- and I'm glad you found OCF.
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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#16601 11-29-2004 04:38 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Jack!
Glad you made it on the site! Now you can see how important having an 8 year survivor is to all of us! Jack is a cousin of my brother-in-law and is the very first person my husband talked to that had this disease. Jack's input and story helped me get through the first year of treatment before I found this site. Just knowing someone that had survived treatment was help! Having a survivor in the family gave me hope!! And I'm dragging you along to our next reunion too! Love, 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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#16602 11-29-2004 10:29 AM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Dec 2003 Posts: 116 | Great meeting you and hearing your success story. Its an inspiration to the stage 1V folks.
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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#16603 11-29-2004 11:16 AM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Jack,
Welcome and it is nice to hear your story. I was also stage IV and have been doing fine for two years. I am getting married next month and my fiance made me promise that we will have at least 20 years together...so 8 does not sound like quite enough to me. Let's all of keep it going and set all kinds of records for survival!
I agree with you about this website. When I was at my lowest point, just after radiation treatments ended, I discovered the wonderful people on the OCF forum, and got a lot more support, understanding and information here than I ever got from anyone at MD Anderson.
Keep doing well,
Danny G.
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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#16604 11-29-2004 01:54 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Dear Jack What a joy to read your uplifting story - 8 years is wonderful. I have found the internet and this site in particular very supportive during my journey. I can't imagine how it must have been not having access to the information which is now easily available. Thankyou for posting your positive news here. With love and congratulations from Helen 
RHTonsil SCC Stage IV tx completed May 03
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#16605 11-29-2004 06:05 PM | Joined: Nov 2004 Posts: 104 Gold Member (100+ posts) | | OP Gold Member (100+ posts)
Joined: Nov 2004 Posts: 104 | Thanks everyone for your warm welcomes. Thank YOU Kris for giving me the information about OCF. It sure was a joy to finally meet you, your wonderful husband and the rest of your family. Maybe one of you could walk me through the following. I was rummaging through some drawers today and found a book that I would like to share with everyone, but I don't know where to go to let everyone know about it, or if it has already been posted. The name of the book is "The Cancer Conqueror" An Incredible Journey to Wellness by Greg Anderson. It actually came out about a year after my surgery and radiation, but reading it gave me a completely different outlook on those radiation treatments, to which I had some rather negative remembrances and thoughts, and to the whole recovery process. Thanks again Love to you All Jack .......... Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV, Srgry 1/23/97 tonsillectomy & mod radical neck dissection, Radiation 35 trtmnts both sides | | |
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