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Wait, what are you sending me for Christmas Jim?!?!?


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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Dear Lucinda,
There is a big diffenence between the hours and days after surgery and the weeks and months after surgery. You can prepare your family for the hours after surgery by telling them that you will most likely be gauze wrapped, drainage tubes everywhere, hooked up to a bunch of monitors, and FACE SWOLLEN like crazy. [I almost fainted the 1st time I saw my husband in the recovery room after surgery, but it gets better day by day.] John came home with staples in his neck from ear to ear. We just had to be asiduous about keeping the area clean and when the staples were out there was no visible scaring. You won't be "pretty" the 1st few weeks, but you will get back to normal. If you really want a "recovery room" picture, I think I have one, but it may not be the best thing for you to look at. Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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My husband kept saying I was finding out too much information though reading and looking and thought I was scaring myself...as it turned out it didn't matter to me cause I never saw myself with tubes and if I did I don't remember anything...So to be prepared for me didn't matter...cause I didn't see the worst of it. Here I they used stitches and staples in my wrist.

Lantus is a great insulin btw you probably know that. It has helped my husband who is a brittle diabetic get better control...


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
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I wish I had more pictures of me early on, but I was in ICU for a week because I had pneumonia after my surgery and you can't take pictures in ICU. I do know that my neck was all taped up at first covering my incision so you couldn't really see it and I had three "drains" and a trach. My neck had a bagillion staples in it under the tape. I do have pictures of the staples (that aren't on the blog if you want to see them) and a picture of me with the trach in. I looked rough. As far as my arm, apparently I had something different than everyone else. I had integra put down on my wrist and a wound vac put over that, and I had the vac for about a month from my surgery and then I had a second surgery for my skin graft to be put down and I had the wound vac for another week. It is supposed to speed up the healing. I have pictures of my wrist pre and post skin graft on my blog as well if you want to know what that may look like. They are probably my favorite pictures from the whole thing, a little gross, but awesome nonetheless.


Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.

**** Stephanie passed away 12.15.09.... RIP our dear friend****


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lucifen Offline OP
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Yeah, I just wanted to know to prepare my kids for what they'll be seeing. My oldest daughter is getting married in January and I'm afraid she'll freak out when she sees me. Tried to convince her not to come home from school for the surgery but she's insisting. It's good to have the pictures of a few weeks after, that should be reassuring to her.
Thanks


Lucinda 52 y.o. no risk factors -dxed 11/10/09 w/ Right lateral tongue SCC 2cm, bilateral neck dissection with 3 nodes positve on right, Induction chemoTx followed by ChemoradioTx, last Tx 4/3/09, PET/CT 11/8/09 showed no sign of recurrence.
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You can see my final result (and some pictures of a younger man and someone right after surgery) at my story in the people section of the web site. http://www.oralcancerfoundation.org/about/brianhill.htm


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Wow, you look great, that's very reassuring.
Intersting to read about the screening at dental exams, I got them regularly and it was my dentist who recommended I see an oral surgeon for the lesion on my tongue, but this thing had come up rather suddenly in between my twice yearly appointments, and then went from benign to invasive cancer in a matter of months before my next exam. That's a little frightening.

Last edited by lucifen; 11-18-2008 05:10 AM. Reason: wrote weekly instead of yearly

Lucinda 52 y.o. no risk factors -dxed 11/10/09 w/ Right lateral tongue SCC 2cm, bilateral neck dissection with 3 nodes positve on right, Induction chemoTx followed by ChemoradioTx, last Tx 4/3/09, PET/CT 11/8/09 showed no sign of recurrence.
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Stephanie,, send me those pics. my email is available to all. I'm still thinking about what to send you for Christmas beside a Merry Chritmas and a Happy Ne Year . LOL everyone send that..


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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If you go to youtube.com and search radical neck dissection, total glossectomy and such...you'll see operations...careful very graphic


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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lucifen Offline OP
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Thank you Ray, I did find some surgical pictures when searching, just wanted to see some after pictures. Yes, very graphic. Going for surgery tomorrw, will find out about lymph nodes on Monday or Tuesday. Thanks to everyone for your help!


Lucinda 52 y.o. no risk factors -dxed 11/10/09 w/ Right lateral tongue SCC 2cm, bilateral neck dissection with 3 nodes positve on right, Induction chemoTx followed by ChemoradioTx, last Tx 4/3/09, PET/CT 11/8/09 showed no sign of recurrence.
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