| Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Good luck tomorrow and will be sending good vibes your way.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Sue,
I'm not sure if you will get to read this before your surgery, because despite how many times you told me in your emails 2 years ago, I still can't figure out the time difference.
I have been keeping up with your posts, every week or so and lost track of when your surgery was going to happen.
I have reread our emails from 2007 and can't believe how things have changed since then. Nobody deserves to go through all that you have already and still have to go. My thoughts and prayers will be with you and I am hoping that you will be posting some good news soon.
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: May 2007 Posts: 132 "OCF Down Under" Senior Member (100+ posts) | OP "OCF Down Under" Senior Member (100+ posts) Joined: May 2007 Posts: 132 | Thanks for all the good wishes everyone! I had surgery on Wednesday and came home on Friday looking a little like Frankenstein with staples on both sides of my neck. They seemed to have used the old scar line on the left and the right hand side is obviously new. I'm also very puffy and tired.
I don't think that they found any surprises although I'll get the full story when I see my Surgeon on Friday. The Surgical Registrar who did the rounds on the night following my surgery did say that operating on the left side of my neck was like digging in concrete! (because of scarring from previous radiation and surgery)
Jerry - it is amazing how much things can and do change with this disease! It's very true that even with the smallest and most innocent looking of lesions you can't ever predict where you will finish up. I'm sure that my ENT won't ever tell anyone that they are virtually assured of a cure when dealing with this disease ever again.
Sue
55 y/o SCC LL Tongue 3/27/07 Part. mandibulectomy 9/2/07 Left ND 5/12/08 RT/Chemo Rec LL Tongue 07/09 Part gloss 8/5 & 8/25 Surg 10/28/09 re mets to R neck & L jaw RT & Chemo finished 12/22/09 PEG fitted 05/06/10 L buccal SCC 10/10 freeflap (forearm)surgery 2/28/11 L buccal and gingiva
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Ready made halloween costume then sue.I remember calling robin "my little frankenstein",but boy was i amazed how that scar just dissappeared into the fold of his neck just a few weeks after surgery.
Well done you and happy healing.
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Hi Sue, I'm not sure what to say except my thoughts are with you. You are one tough woman to have been through what you have and to be able to stay so strong. You go up in my idol ranks with the likes of ChristineB and EzJim. All 3 of you are truly inspirational. Wendy
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | I am amazed that you are home after a couple of days Sue! Best of luck with the healing and the upcoming visit with the surgeon. Totally agree with Wendy re how inspirational you CB and EJ are. {{{xxx}}}
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: May 2007 Posts: 132 "OCF Down Under" Senior Member (100+ posts) | OP "OCF Down Under" Senior Member (100+ posts) Joined: May 2007 Posts: 132 | Thanks for the the kind words Wendy and Gabe. I really don't feel that I have done anything worthy of being defined as inspirational, I just play the hand the I have been dealt and figure that I should face all treatments and surgery with optimism. If I don't I think I may as well throw my cards in now!
In some respects I have to count myself as lucky, I have avoided grafts, trachs, PEGs and Ports - so far. I have a feeling, though, that with the intensity of my forthcoming treatment I will require a PEG or maybe a naso-gastric feeding tube. Last time around my tongue and the RHS of my mouth/neck was not included in the radiation field but this time they will be so I may not be able to maintain my nutrition as well as needed without assistance. Time will tell!
Cookey - the cut on the left side of my neck is barely visible even with the staples in - it is amazing how the surgeons manage to put their cuts in places that eventually render them almost invisible. The RHS doesn't appear to be in a crease but I think that is because of the location of the affected nodes - it should heal to be almost invisible, though. I actually haven't had my hair cut since I finshed radiation last year so it covers almost all of my neck if I don't tie it back! Keeping my hair long will also help hide the hair loss from radiation. There are definate advantages in having long hair when going through treatments!
We only had one lot of 'trick or treaters' last night (most people don't celebrate Halloween in Australia) and my husband did the honours at the front door. One big plus in being sick is I can get other people to answer the telephone and the door - normally it's 'Mum' or 'Sue' can you get that! I also don't have to cook, clean or do the washing! Suddenly my brood are able to do things for themselves and me. AMAZING.
Sue
55 y/o SCC LL Tongue 3/27/07 Part. mandibulectomy 9/2/07 Left ND 5/12/08 RT/Chemo Rec LL Tongue 07/09 Part gloss 8/5 & 8/25 Surg 10/28/09 re mets to R neck & L jaw RT & Chemo finished 12/22/09 PEG fitted 05/06/10 L buccal SCC 10/10 freeflap (forearm)surgery 2/28/11 L buccal and gingiva
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Isn't that interesting how that works. They don't seem to do anything when we are well, but when we are sick they start doing things on their. Well, now I know my husband can do more than was he usually does. I do definitely appreciate as he is going to have to in the coming months. Anyway, glas you are home from surgery. Keep us update on how you are doing. I agree with the other. You and many others on here are inspirations to me and have helped me get the strengh and will power up to FIGHT this thing and KILL is once and for all. Continue my prayers for healing for you.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
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