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#24213 08-31-2007 06:05 AM | Joined: Aug 2007 Posts: 6 Member | OP Member Joined: Aug 2007 Posts: 6 | Hi everyone! I just joined in the last couple of days. I had verrucus carcinoma in 2000 that was treated with surgery and lasering of the inside of my mouth - I was diagnosed again in June 0f 2006. In Sept 2006 I had surgery again -it had invaded a large portion of left side of my mouth and they did a "free flap" procedure where they take out a lot of tissue then use the radial artery from your arm and some of the muscle and tissue to basically make you a new mouth. That was pretty much a nightmare and after 2 weeks on a ventilator - I went home, recovered, went back to work in November and tried to put my life back together. I could not longer eat - dentures were just for looks - not functional, had to have bulk reduction in mouth, had the arm redone to get more use out of it. Thought things were going well. Mother diagnosed with small cell lung CA in early March - had not smoked in 35 years! She died 4/28 - 6 weeks from diagnosis to death (74 yo). I finally got the dental implants and thought things were looking up - but went in for my 1 year check up and there is a large mass in the roof of my mouth. Don't know how I missed it, but I did. It's under my denture. Dr. scheduled biopsy for the 5th. When I got home, I took out the plate and my hubby and I both looked...ugh, we've seen it before, we know what it looks like and this looks like it again.
Had spent time getting affairs in order last fall - so that's not as prevalent for me this time. My husband took off quite a bit of time last fall and did more to take care of someone that anyone could ask - this time he's pretty scared. I know what I am not willing to do, and I don't want to end up a monster from ongoing surgeries that crop up and they keep having to take a piece here and there. I think quality is more important than quantity and my family knows how I feel. How many times can the same CA recur without it becoming metastatic? Like everyone else who has dealt with this -trying to stay positive - keep a sense of humor and savor each day....but like everyone else it's not always easy.....Looking forward to being part of this community of people and survivors.
47 y/o female had Verrucus CA 2000, recurred 8/06 - free flap lt. forearm 9/06 - 2 wks in hosp - 10 days on vent - lower dental implants as result. Former smoker, social drinker, no chemo or rad treatment
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#24214 08-31-2007 07:09 AM | Joined: Nov 2006 Posts: 93 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2006 Posts: 93 | Hello, The one thing I have learned from this forum is "It ain't cancer 'til the biopsy says it is". Will be sending you positive vibes.
This is a safe place to be and so many people willing to help.
Maggie
caregiver to husband right tonsil stage 3 35 IMRT TX completed 1/5/2007 PET Scan clear 3/07 biopsy 9/07 clear 1st yr PET scan 12/18/07 clear
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#24215 08-31-2007 02:18 PM | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Jun 2007 Posts: 510 | Hello and welcome from another NC forum member! So sorry to hear about your mother.
Tell us more...where are you being treated?
We will certainly remember you in our prayers as you go through biopsy...
Lois & Buzz
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement; T2 N2-B M0 Stage IV-A 28 IMRT + 6 Paclitaxel/Carboplatin Getting stronger every day!
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#24216 08-31-2007 07:01 PM | Joined: Jun 2007 Posts: 3 Member | Member Joined: Jun 2007 Posts: 3 | i'm so sorry about your new mass--and also about your mom. i too have had recurrent oral cancer-scc left anterior tongue-so far 5 excisions and radiation in two years with entirely clear pets and ct. so no mets. but i'm always afraid at the monthly checks--that they'll find another and have to snip some more.
i wonder when i would refuse--when i'll decide quality over quantity. for now i'm so grateful for the time i have. and the incredible joy i feel about my future--however long or short.
i pray that you feel joy right now--no matter what the future. you are very brave.
rainbows scc tongue.
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#24217 09-03-2007 11:15 AM | Joined: Aug 2007 Posts: 6 Member | OP Member Joined: Aug 2007 Posts: 6 | Thank you both - question for Allensark - how did the radiation impact your quality of life? With 5 excisions - are you able to speak normally? Just curious. I have had surgery both times - had a radiation consult last fall, but the margins were clear and they decided to hold off and save it for another time if needed. Lois & Buzz - I'm seeing a Dr. that only practices at Wake Med - would not have been my first choice - but the Dr. is excellent - he and the plastic surgeon did a 10 hour surgery last sept with a free flap of the left forearm. I look a little different - but all in all I think they were an excellent team. I really don't want to have radiation - with all of the swallowing issues, dry mouth etc., I've heard about. I live on Ensure now - not being able to each much or taste has had a major impact on my life. When not working - cooking is something I have always done and something my hubby and I enjoyed doing together.
All I can do is wait for Wednesday and see what comes of the biopsy. You are all wonderful - it's easier to talk to people who have personally faced these same issues and fears..:>)
47 y/o female had Verrucus CA 2000, recurred 8/06 - free flap lt. forearm 9/06 - 2 wks in hosp - 10 days on vent - lower dental implants as result. Former smoker, social drinker, no chemo or rad treatment
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#24218 09-03-2007 10:35 PM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: May 2007 Posts: 632 | Hang in there! It's almost Wednesday and the next 'stage' will then begin. And it sounds like you've already coped with a lot of those. I take my hat off to all of you who have faced extensive surgeries and followed it up with more evil treatment in the form of radiation and chemo. I'm lucky as although my life will be shorter, it's reasonably comfortable and manageable right now. My thoughts will be with you tomorrow and I hope for the best for you Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4 6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine therapy September 07 Now dying to live!
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