| | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) |  Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | If you are getting treatment at Princess Margaret Hospital, they will have a whole dental department that will look after your teeth and to give you whatever advice you may need. I will definitely consult them.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Brooklyn Bridge, your account of the original surgery is quite confusing, as asked by others but not answered yet. It might just be a terminology issue.
From what I am reading into it, your surgery did not involve removing bone from your arm and using that to rebuild the jaw. They used a flap created from the forearm and grafted that skin into your mouth. That flap is now where your recurrence is located. Am I understanding that correctly? A comment was made that seems to infer maybe having bone cancer from implanted bone from your arm. I know we use different words here than other countries.
Do you remember the name you used here previously?
As far as the teeth, as Gloria pointed out, you would need what we call here a dental oncologist to do a thorough evaluation as to what teeth may be an issue prior to radiation/chemo.
Over the years there have been a few folks here with squamous cell carcinoma of the skin after treatment. Some even around the PEG insertion site. I have often wondered if it was related, but all the doctors have ruled it out.
Best wishes for smooth sailing!
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Feb 2015 Posts: 14 "OCF Canuck" Member | | OP "OCF Canuck" Member
Joined: Feb 2015 Posts: 14 | Good Morning Uptown and thanks for the note! You are almost right on. There was no "bone" involved...it was an upper left arm (near bicep) free form flap harvested and placed in my left tongue area after a T4 tumor was removed.The indications now are that what was/is "left" of my original tongue etc is fine...no recurrence. SCC has been found in the harvested implant and now I wait (until tomorrow) to find out what the plan for treatment is. Frankly I would just like to think this has been caught very early and surgery may be the way to go. details to follow. Thanks for the support! (and if anyone anywhere has heard of this please let me know!)
Brooklyn Bridge...beat once will beat again!
Unresolved sore throat
Biopsy
SCC Stag 4 base of tongue
RX
RND
Free Fore arm Flap
06/96
Age 40
No MET
No RAD
Clear until 01/15
Biopsy on Flap Implant
MRI
Diagnosis
SCC- Contained to Flap Implant
RX
Repeat of Original Surgery
Age now -59 years
Non -Smoker
Social Drinker
Pre new surgery
Lung CT and Chest X Ray
Typical pre op blood,EKG etc
NUMEROUS consultations
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Thank you for clarifying for me. It makes much more sense, to me, anyway. You may be the first person I know who has skin cancer in your mouth!
Did you say you were here on the forum previously?
Best wishes for some good news tomorrow!
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | [quote]You may be the first person I know who has skin cancer in your mouth![/quote]
[quote]SCC has been found in the harvested implant [/quote]
Is there such a thing as SCC skin cancer? I think it is likely considered recurrence of the original SCC that spread to the the graft area.
Either way this is a very interesting and unique reporting. We wish you the very best in this new battle but do keep us updated with as much detail as you care to share.
Thanks
Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Don, there are hundreds of thousands of cases of squamous cell skin cancer a year.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Thanks, learn something new all the time. The definition I held about the term SCC was that it was the soft mucous sort of skin such as the oral, vagina, inside the penis, anal areas. I did not associate skin in that category. I thought skin cancer as always being that type when people say look for changing blotches or lumps and bumps that start the change over time, that sort o thing.
How does SCC skin cancers present? I guess I could go look it up but I'll ask on behalf of other members to spare them the extra search. lol
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 |
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Interesting that skin cancer is SCC, yet always referred to skin cancer while oral cancer is SCC. Did not both are types of the same SCC
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | There are other types of skin cancer such as melanoma, basal cell carcinoma, karposi sarcoma, besides squamous cell carcinoma.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
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