#78856 08-17-2008 03:32 AM | Joined: Aug 2008 Posts: 14 Member | OP Member Joined: Aug 2008 Posts: 14 | Cancer is a hostile world but the people who visit this site are surely among the most courageous and compassionate people anywhere. I discovered you a few weeks ago after my husband was diagnosed with SCC in the area behind his right molars. You have helped me as we face our uncertain times. Until the surgeon is "in there" he will not know how much of the right lower mandible he will have to take or exactly which method of reconstruction will be used. We also don't know yet whether my husband will need radiation after surgery. My husband's response to all this is predictibly upbeat and quick-witted. When the surgeon told him for the first time that some or all of that jaw would have to go, my husband said "ok, then, where's my Darth Vadar mask?" The surgeon replied "They sell them down the street for $17.95 but they have a special for patients of the hospital." Where do these guys get this from? How do they keep it up? I'm more of a chronic worrier (I worry therefore I am) and have a much harder time focusing on the present and not worrying about the future. I know my husband's way is healthier and will help sustain him, but sometimes I can't get myself into that way of thinking. This is frightening and although we think his prognosis is good (no evidence of lymph node involvement or invasion of distant sites), the immediate future will be so very difficult for him. Immediate worries for me are whether the grafts for the reconstruction will heal properly (he is a somewhat brittle diabetic) and how we will manage when he is home from the hospital, which we have been told could be 2-3 weeks after surgery. I know that many, many of you have walked this road and you will inspire me. I may turn to you on good and bad days and I thank you in advance for being there. --Karen
husband 58 DX mid-July 2008 SCC right retromolar trigone region. Surgery 8/26/08 segmental mandibulectomy with fibula free flap reconstruction. Insulin-dependent diabetic.
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Hi Karen,
As you know already, you have come to the right place for support and advice. Judging by all of the information that you have provided, you have done your homework very well and this is going to be very helpful in getting your husband through this ordeal.
As you can tell from my signature, I had a much different experience with scc than you husband is having. There will be members along soon, that will certainly pick up this thread that have been down the same road. Contacts are usually less frequent on the weekends, but keep checking back.
I must say that your husband's and the surgeon's attitudes are different than most and that's a good thing. However, the reality is that he is in for some rough times and I hope that he can maintain this attitude throughout his treatment. While being a diabetic does add some additional concerns, there are many in the same situation and it is manageable.
We will be here for both of you during the good and bad days and he might find it helpful if he joins the forum, too. However, during the 3 and a half plus years that I have been a member, it is unusual that both the caregiver and survivior are both on the board.
Where is he being treated? Good luck on the 26th.
Jerry (Formerly from Brooklyn)
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: Aug 2008 Posts: 14 Member | OP Member Joined: Aug 2008 Posts: 14 | Yes, you're right. Their approach WAS a bit weird, but we all laughed and that was good. So is the attitude that says I can lick this - with a smile. Chip is being treated at Sloan Kettering and we are confident about the team. Now all we have to do is to wait, hope for the best and keep up the good spirits. Our latest effort? We decided that just like during the Civil War, we might hire a substitute to fight the war for Chip. Then again, I don't think anyone would accept for any amount of money. Thank you for your reply.
husband 58 DX mid-July 2008 SCC right retromolar trigone region. Surgery 8/26/08 segmental mandibulectomy with fibula free flap reconstruction. Insulin-dependent diabetic.
| | | | Joined: Aug 2008 Posts: 14 Member | OP Member Joined: Aug 2008 Posts: 14 | Jerry, I should have added that I have encouraged my husband to explore the site and join the board. However, he is of the "I am a rock, I am an island" school so joining the board would be against his grain. But, we will see, especially as treatment progresses, if he changes his mind. It's a good thought, and I will suggest it again (gently).
husband 58 DX mid-July 2008 SCC right retromolar trigone region. Surgery 8/26/08 segmental mandibulectomy with fibula free flap reconstruction. Insulin-dependent diabetic.
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Sloan Kettering...top notch. That's great. Probably lots of places to buy a Darth Vadar mask in "The City".
Hope to see Chip on the board.
Jerry
PS My daughter worked for Hughes, Hubbard, Reed in the Battery Park area. Do you know the firm?
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: Aug 2008 Posts: 14 Member | OP Member Joined: Aug 2008 Posts: 14 | Yes, it's an excellent firm. They work very hard. Perhaps that's why your daughter worked there, and I assume no longer does.
husband 58 DX mid-July 2008 SCC right retromolar trigone region. Surgery 8/26/08 segmental mandibulectomy with fibula free flap reconstruction. Insulin-dependent diabetic.
| | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2008 Posts: 706 | Karen- My husband has also been a rock through his ordeal. He never complains and that makes it hard when I know he's feeling badly but won't admit it. My husband had half of his lower right mandible removed and replace with leg bone and tissue. They also used some tissue and skin to reconstruct the floor of his mouth. The surgeons did an amazing job and the grafts took very well. He had his surgery at Columbia and is now being treated at Sloan. Let me know when you will be there.
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2008 Posts: 309 | Just wanted to give you a warm welcome, Karen.
Hoping your hubby has a fast recovery and that you can stay calm. Try to remember, at this pint there is not much we layman can do so we have to turn it all over to the pros and remember we are in good hands (God's hands, and a good surgeon's hands).
My surgery was different but I can tell you I expected much worse prior to the surgery ... and was pleasantly surprised when I saw it was more manageable than I expected. I am not done yet ... but so far so good - and I wish you all the same.
Blessings Rita
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: 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 | Did they Stage him yet? Have they told you no radiation or are they waiting to see what they find during the surgery? Hang in there and use this site as much as you need to, even if it's venting.
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: Aug 2008 Posts: 14 Member | OP Member Joined: Aug 2008 Posts: 14 | Thank you all, kind people for your well wishes and your thoughts. My husband is not staged yet. I believe that they are waiting for surgery to see just what's what and whether he will need radiation. Thank you again for the welcome. It is appreciated (although I wish I didn't have a reason to be here).
husband 58 DX mid-July 2008 SCC right retromolar trigone region. Surgery 8/26/08 segmental mandibulectomy with fibula free flap reconstruction. Insulin-dependent diabetic.
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