#83369 11-02-2008 04:53 AM | Joined: Nov 2008 Posts: 1 Member | | Member
Joined: Nov 2008 Posts: 1 | Hi everyone, I am new to this site and just wanted to introduce myself. I am a 6 year survivor of SCC State IV with unknown primary. I am hoping to give hope to those currently in treatment.
MicheleAnne SCC Stage IV Unknown Primary 6 Year Survivor
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Welcome Michele,
Congratulations on your 6 year survival and I'm sure your story will go along way in encouraging those that are just starting out on there journey.
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"
| | | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2004 Posts: 598 | Welcome and thanks for posting!!! It is always great to see long term survivorship represented here. Too many who have successful treatment drift away from here, for a lot of very good reasons, which can lead to a skewed and overly grim picture of the process. Thanks for contributing!!
Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 8 |
Welcome to OCF Michele.
Its always nice to hear from survivors. It gives everyone hope and inspiration. Congrats on your 6 year mark and thanks for joining.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Welcome and thank you for posting! It does give all of us a boost to see someone like you offer up your experiences to help us.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Wow 6 years is quite the distance...I am new to this and I am still having a hard time believing that the doctor did get all and that I don't have cancer anymore...I want to believe but it has been quite a shock this whole ordeal...but thanks to people like you and many others on this site I came through so far...but six years definately something to celebrate...
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Mar 2005 Posts: 58 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2005 Posts: 58 | I was so glad to read your post and that you have decided to join us. I too, have been cancer free 6 years. For awhile I thought about not participating anymore, as fortunately I was fine and reading others problems and struggles was depressing to me. Then it came to me about how terrified I was at learning that I had Cancer. I think the biggest fear was "the fear of the unknown". Many times Doctors use terms that aren't in our vocabulary, and they are so used to dealing with this illness they forget to explain what we can expect to experience. Having struggled with such fear I decided that I would keep on posting and trying to explain what limited knowledge I had so that others would benefit. Welcome aboard!
Hacklene
Hacklene
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | welcome! so nice to have you. may i ask something out of curiosity? if there is an unknown primary, what is the treatment protocol? i am quite new to all of this and that one perplexed me, so thought i would ask Here is a toast to a continued cancer free future (toasting with ice water btw
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Rita,
I am a recent "Unknown or Occult" Primary. These days most "Unknowns" H&N primaries are found once the patient is referred to a CCC, so true H&N Unknowns are now less the 1%.
First, an intense search is done to locate the primary with extra hi-res scans, scopes, exploratory during ND and Tonsillectomy surgery.
If nothing is found then the location of the Unknown primary is approximated to all potential sites by the location of the cancerous lymph node(s).
The RT treatment fields are kept much wider and the potential primary sites are treated to an intensity that normally might be reserved for just the tumor.
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | 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 | I was an Occult at first but the docs at Moffitt said that they were determined to find it so they put me under and started taking biopsies of all suspected areas given my medical history and my life's history for lack of a better phrase. I fully expected my tonsils to be removed but luckily for me they found my Primary at BOT and the doc said it was so small he thought he got it all with the biopsy so they stop.
They had told me that if they couldn't find my Primary that the radiation field would have to be increased to cover all suspected areas and since I was receiving the maximum radiation regardless, 72 gys, that it could potentially mean less delivered to the known areas of cancer.
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.
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | thanks for the explanations some of this stuff is soooooooooo confusing (even with the stuff they tell me for my own diagnosis) so i figure, instead of sitting here not knowing and wondering - ask
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
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