#91449 03-09-2009 02:36 PM | Joined: Mar 2009 Posts: 4 Member | OP  Member
Joined: Mar 2009 Posts: 4 | Hello all-
My name is Laurie and my husband Ace was diagnosed Thursday 3/5/09 with oral cancer. It has not yet even been a week, but that day feels like a year ago. He is 37 years old, never smoked.
I cannot find the appropriate words to express the gratitude I feel for the existence of all of the people on this board- especially Brian Hill. I downloaded the draft he put up and read it voraciously yesterday. I can say that our initial shock and disbelief is quickly morphing into an aggressive attack plan that was directly spurred by all the wisdom attained from this board. I got him an appointment with a specialist at Duke for next week, a step I probably would not have initially taken if only armed w/ the info from our local Doctor. I feel it answered many of the questions Ace had and was too scared to ask, as well as suggested questions to ask that we were not even aware of.
Today is his birthday and he is lying in bed scared and exhausted.
We have a 3 year old son. He is the same age that Ace was when his own dad died. Not related, but I know it has to be weighing heavily in his mind.
I am in nursing school, and I feel my instructors will be a great source of support and knowledge for us as we travel down this bitterly undesired road.
Thanks again to all who have shared their stories here.
Laurie | | | | | 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 | Hi Laurie and welcome to OCF. I am upset to read your post - so many young people getting OC!!! Makes me want to scream. Okay, now that I got that out of my system, there are many on this board who will be of great assistance you you as far as what comprehensive cancer center you might want to consider.
It sure feels better when you have a plan, doesn't it. I can remember how encouraged I was 5 years ago to see the words "ActionCancer" in big bold letters on the side of our CancerCare Center.
Do you know any more about his cancer? Location? Size? Staging? That information will help the wise people from the board to offer the right counsel.
Hugs. One step at a time, one day at a time. Cancer is not a death sentence~!
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: Jan 2009 Posts: 216 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | Welcome Laurie - I only wish I had found the draft as fast as you did. You are in a great place to get answers. Everyone on this forum has been wonderful with answers and support.
Cheryl
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | | Joined: Aug 2007 Posts: 83 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2007 Posts: 83 | Welcome Laurie - This board is a great place with wonderful people. I was treated at Duke and can not say enough good things about my care. The most important being great results. Feel free to PM me if you have specific questions, etc related to Duke and/or my treatments there.
bill
Bill Van Horn-53 ex-smoker, social drinker, Biopsy 8/24, Diagnosed 8/30/07 BOT T2N2-B MX Stage IV. Started treatments 10/1/07. IMRT 35 x, Cisplatin - 3 cycles - completed treatment 11/16/07. CT Scans on 1/15/08 all clear Selective neck dissection 1/28/08. All nodes clear.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Laurie...first I have to tell you, you are so lucky to have found this site. It is just wonderful. I found it about 2 years after my diagnosis and it has changed my life. The beginning is craziness because you have so many thoughts going through your head. I'm sorry you and your husband have the added stress of him losing his father. Although this cancer is not a death sentence, just like Donna said. I know it's hard and we are here for you!! Once you have more information maybe you can a signature line so we know the status of you and Ace. Has he checked out the forum at all? He may find it helpful. Unfortunatley there are many young people here...myself included. I look forward in helping you any way I can.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Hi Laurie
Welcome to OCF. Glad you took the time to read the 'draft copy'. Its an amazing piece of work that really digs deep into all the questions and helps give direction. That can be so helpful in a time when you dont know which way to turn. We are here to support you and of course yoru husband. Please feel free to ask questions.
Please have your husband do everything he wants now, which includes eating. As you have read, its a very long difficult road he will travel. Dont let cancer steal his time or energy away from him now. Eat like crazy and enjoy life to the fullest, things will change in a few weeks, so for now live it up.
Best of luck to you both on your journey.
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: Nov 2008 Posts: 72 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Nov 2008 Posts: 72 | Laurie,
I am glad that you found OCF as quickly as you did as well! I am a youngin as well..much younger 23. I am in remission and I have been clear for over 2 months. It was a hard battle but I know that he can get through this with your help! Best of luck to you both!
*Shaylynn*
11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0
12.20.2008 Partial glossectomy & left neck dissection. Clear margins.
6.24.09-Pet Scans show 2 areas of concern
8.5.09-Recurrence-Perotid Gland and swollen node removal
9.29.09 Carboplatin & Taxol x8 Tomo x39
11.19.09 WILL COMPLETE TREATMENTS!
| | | | | Joined: Mar 2008 Posts: 67 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2008 Posts: 67 | Laurie,
I am 10 months post treatment. Welcome to the site. Very glad to hear that your husband will be seen at at CCC next week. Good job!
I'll look forward to seeing the full diagnosis and may be able to comment in more detail based on my own experience. Hang in there. As others have stated, cancer is not a death sentence.
Tell Ace to eat as much as he wants right now. Don't worry about gaining a few pounds.
Take care,
Frank
SCC Right Tonsil Dx 2/25/2008 at age 43
T1N2B M0,Stage IVa
8mm primary removed 3/5/08
4cm lymph node removed 2/22/08
2 additional sub cm nodes
Tx at Stanford: 30 x IMRT, 2 x Cisplatin,
Started radiation 3/27/08, Completed 5/7/08
p16+, HPV 16+
2 Year Post-TX PET CT 5/10 - CLEAR
| | | | | 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 | He needs to be tested for HPV.
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: Mar 2009 Posts: 23 Member | | Member
Joined: Mar 2009 Posts: 23 | I am going thru radiation treatment with my mom right now, and it doesn't seem to matter how old the people are that come in and out of there. Old, young you just never know. I just joined this board and it will be great in the coming weeks!!! | | |
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