| Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | Pete,
Excellent post! This should be on a list of FAQs or something.
Well done.
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08 Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016 Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | [quote]I would still try to get another opinion from a CCC[/quote] Parovis is scheduled to have this done tomorrow...
The whole free flap thing is dependent on how much tongue needs to be removed and if a flap is proposed, then that implies a significant amount of tongue to be lost.
The procedure is quite complex -- Both my flaps were scheduled for ten hours in the OR -- Since this is not a simple thing, I infer that either a CCC or serious cancer facility is already involved -- This is not something a lone practitioner would do.
Here's what my 'radial forearm free flap' procedure involved:
The gas-passer had to put me out for the ten hours.
The naso-gastric tube had to be installed (not needed if PEG in place).
The tracheostomy had to be done.
The throat had to be opened for the neck dissection and anything removed prepared for the pathology lab.
The cancer had to be removed from the tongue and prepared for the pathology lab. The remaining tongue had to be prepped for fastening the flap to it and floor of mouth.
The free flap had to be harvested from the wrist donor site.
The flap's blood vessels had to be attached to the neck dissection blood vessels by surgeon with trusty hooded microscope -- Eight micro-sutures per vessel.
The flap had to be installed and fastened to remaining tongue and floor of mouth.
The skin graft had to be harvested from the thigh and the resulting wound covered with that nifty 'crumble as it heals' gizmo and sutured to stay put for a while.
The graft had to be installed and sutured to the wrist donor site and the drain(s) installed.
All the throat-cutting done by the Cutthroats had to be closed and sutured (literally hundreds of sutures and staples were involved) and the drains were installed (I think I had about five drains at first).
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Very good and descriptive posts Pete. My surgery for my free flap and mandible replacement was 18 hours and there was quite a team involved. I still have shaken the hand of everyone that made it possible yet - probably only 1/2.
Parovis it is still your decision, but at 39 you have a lot of years ahead of you. There are no guarantees with cancer - you can do a lot or a little in the surgery/treatment and it may or may nor come back. Do what you are most comfortable with and know that we will all be here supporting you both during and after your surgery.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Jul 2008 Posts: 228 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2008 Posts: 228 | The free flap surgery is a loooong procedure. Mine was 14 1/2 hours followed by an 11 day hospital stay.
That was a really good description of the procedure, Pete. I didn't have the graft put on my arm in the same surgery as I've mentioned before, but everything else was the same.
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****
| | | | 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 | Had much the same as others have mentioned including Pete's first free flap surgery. Have had a few issues since then with the section between the flap and tongue. In fact had another (day surgery only) operation yesterday. The operation went well and even though I had a fair bit of pain and swelling yesterday I am feeling a lot better his morning. With the help of Panadeine Forte I managed to sleep well for 5 hours straight last night. Counted 15 stiches which means there are probably more. They did take a small graft from inside of cheek to put over the area as a barrier but from the same side which is good! On a liquid diet again for a week. Gabriele
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Gabe I hope that you get more than 5 hours sleep tonight and heal rapidly.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Feb 2009 Posts: 11 Member | OP Member Joined: Feb 2009 Posts: 11 | Thanks for all of the replies. Don't know if I made a hasty decision but once I found out I had cancer, I was ready to make a move for fear of spreading.
I went with the free flap. I made the decision the morning of surgery. Everything went well. About 25% of tongue removed. 10 and half hours of surgery and as of yesterday, back home and recovering.
Other than it looking pretty bad, overall, i'm feeling pretty good. Trusted my doctor and plastic surgeons on the free flap. Think I made the right decision. So far, clear margins and negative on the nodes.
Just trying to heal. Would also like to find out why this happened, although probably won't. I'm not a smoker or drinker so not sure what else could have caused this, if anything other than genes. Would be very curious though to do a study on lifestyle products we use as I read oral cancer jumped 11% in 2007 alone and mainly in younger people.
Makes you wonder....
SCC T1N0M0 Floor of mouth (under tongue) - Surgery 2-13-09. Forearm free flap with partial glassectomy and left neck dissection. Clean margins and nodes! Contemplating radiation. Non-smoker/casual wine drinker
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Glad to hear that you are home and on your way to recovery. Clear margins and negative nodes are great. Try doing a search on the site for HPV. There was also a thread recently on alcohol in mouthwashes. There are many different thoughts on the causes. Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
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