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| | Joined: Oct 2017 Posts: 7 Member | OP  Member
Joined: Oct 2017 Posts: 7 | Hello All,
I have been dealing with a large leukoplakia lesion on my tongue. It was biopsied and came out to be mild dysplasia. The lesion is pretty large 4cms by 2cms on the left lateral side.
I am being monitored by head an neck cancer surgeon, and surgery was optional at this point.
Visited Dana Faber and Sloan Kettering and received the same advice - Surgery optional for mild dysplasia, monitor for life. Surgical removal mandatory if it turns to cancer.
I am looking to hear on Photodynamic therapy for the treatment of cancer or precancerous lesion.
Which are the best hospitals in the country that specialize in photodynamic therapy for treating oral precancerous lesions?
I would greatly appreciate if anyone could point me to a specialist in the field, anywhere in the country.
Also would be interested in hearing anyones experience with this approach.
Everything I came across, says it is very promising, has lower recurrence rates, and faster healing time, with minimal side effects.
Greatly appreciate the help on this platform.
Thanks,
Vamsee | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Vamsee I read about Photodynamic Theraoy about 10 years ago, which wasn’t done at any of my centers or would be applicable to me due to the depth of the tumor, so I never looked further. It was sort of a new treatment for head and neck cancer, more specifically the tongue, but I believe it’s used for different cancers now. Where I read it was being done was at Roswell Park in Buffalo, NY where it was invented in the 70’s. One restriction though is the depth of the cancer since it does not penetrate deep. Here is Roswell Park website: https://www.roswellpark.org/patients/treatment-services/innovative-treatments/photodynamic-therapyGood Luck!
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: Oct 2017 Posts: 7 Member | | OP Member
Joined: Oct 2017 Posts: 7 | Thanks a lot for the information. I have reached out to Roswell to see if thats something that could help me. | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | vamsee,
I’m sorry I just saw your post today. I hope this theraoy is for you, and be helpful!
Not that it was proposed, but I had Proton Theraoy 5 years ago. It’s what finally cured me after all my treatments.
Good luck
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: Oct 2017 Posts: 7 Member | | OP Member
Joined: Oct 2017 Posts: 7 | I had reached out to Roswell, and they said they don’t treat oral leukoplakia with PDT at this time.
Can any of you please point me to another center that provides Photodynamic Therapy for leukoplakia as a treatment option | | |
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