squamous cell carcinma on tonsil IMRT vs IMPT

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squamous cell carcinma on tonsil IMRT vs IMPT

by jackflak56 on Tue Feb 19, 2019 07:56 PM

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So I've been recently diagnosed with cancer on my right tonsil and two lymph nodes appear to have it also.  My ENT referred me to MD Anderson in jacksonville florida.  Went to them, got scoped, had a biopsy to confirm.  Then met with the surgeon and his team.  Two options: Surgury and radiation or radiation and chemo.  I obviously didnt choose right then.  I like to read up on stuff.   At the moment, my thought process is that I'm getting radiation no matter what.  so I've been focusing on that.  so far i've found that IMRT/Photon has been the main type of treatment radiation type.  But I've been finding preliminary studies that are starting to push IMPT/Proton radiation.  In layman's terms; IMRT comes in like a wrecking ball, destroying everything in it's path, alot of collartoral damage.  On the flip side, IMPT, is like a tomahawk cruise missile.  Comes in, damaging during entry, but able to be modulated to release it's energy at the target site and no exit damage, less colatoral damage.  My ENT that refered me to MD Anderson, after hearing about the research, still wants me to go in and meet with the radiation oncologists to give them a chance to sway me to IMRT.  I really don't see the point and told him that I still want a referal to UF Proton Therapy Institute.  So he agreed to write the referal after I met with MD Anderson.  What I'm looking for is anyones ancedotal evidnece/experience that's gone through IMPT.  I've been reviewing peoples posts for IMRT-PEG tube more than likely required, permanent loss of or degradation of salivary glands, sunburn inside and out of the throat, loss of swallow capability.  Anyone have IMPT?  How did you feel?

RE: squamous cell carcinma on tonsil IMRT vs IMPT

by atcbugsy on Tue Feb 19, 2019 08:57 PM

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Hiya Jack,

Sorry you're here, but glad you posted.  My wife and I researched both therapies as well and wanted to do IMPT for the reasons you stated.  Our biggest hurdle was that BCBS would not cover Proton radiation treatment.  I asked my Oncologist (MD Anderson in Houston) if he would write a letter supporting the use of IMPT and he said that in my case T1N2aM0 for SCC at the base of my tongue HPV 16+ IMRT was the way to go.  So, we did the IMRT.

The bottom line for us was the success rate for my type of Cancer using IMRT.  I'm going back to MD Anderson in about two weeks for my five year checkup.  Treatment was hell and recovery was s-l-o-w.  There are constant reminders-fluoride trays, biotene, lack of saliva, neck exercises.  But a small price to pay to have my life back.

So, be sure and check with your insurance company regarding IMPT for your type of Cancer if you haven't already done so.  Then speak with the facilities regarding success with your specific type of Cancer.  Just my $0.02.

Best of luck.

Bugsy

RE: squamous cell carcinma on tonsil IMRT vs IMPT

by CPerk on Thu Feb 21, 2019 07:53 PM

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Hey Jack,

T2N0M0 Left Tonsil SCC non-HPV here. Finished 35 radiation uni-lateral treatments of Dec 22nd 2018.

Im new around here but can add what I was told after I pressed the issue about proton therapy.

Firstly - I didnt care about cost. Not because I'm rich, but because Im not afraid to be poor again. I just wanted the best technology, lowest side effects and the highest success rate.

I had a tonsilectomy and the pathology showed positive margins meaning the cancer was detected from end to end. This also meant that cancer was left in the remaining tissue bed.

IMRT was the treatment of choice because we needed a shotgun approach at the tissue bed and surrounding nodes, even though I had no node involvment, it was highly probable some cancerous cell where in circulation.

Now what i think would have benefited me more so than any perticular type of radiation technology would have been TORS.

It would have been nice to have the tissue tested in real time during the tonsilectomy. If we could have gotten a clearer margin I could have potentially received less overall radiation treatments. From what Ive read the magic number is 50 Greys of treatment. Once you cross that threshold long term side effects are unavoidable.

However - this wasnt even ever mentioned by my ENT.There was a TORS Da Vinci machine 15 miles away from his office but ran by the local University...

Trans Oral Robotic Surgery (TORS)

Good luck.

RE: squamous cell carcinma on tonsil IMRT vs IMPT

by Arman on Fri Feb 22, 2019 02:34 AM

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Bugsy and I started treatment at the same time 4 1/2 years ago. Like Bugsy, I was also diagnosed with T2N1M0 with primary in the right tonsil SCC HPV+. I had surgery to remove the tonsil followed by 6 1/2 weeks of IMRT.  I considered Proton therapy but was recommended against it. I was told by the surgeon that Proton therapy is most effective when dealing with a solid tumor and that was not the case with me. I am doing great 4 1/2 years post treatment and other than some dry mouth and a bit of neck spasm from time to time, very much back to normal.

Arman

RE: squamous cell carcinma on tonsil IMRT vs IMPT

by TIG2016 on Thu Feb 28, 2019 04:27 AM

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T1N1bM0 primary right base of tougue hpv 16 positive. MD Anderson Houston

I inquired about proton thrapy and was also given the stats. I wasnt concernerd about cost just living. I was 47 when diagnosed. I was persuaded to imrt 33 treatments/no chemo

I'm 2 years 4 months out of my last treatment to the day as of tomorrow and doing well exept for some of the reminders mentioned above by others

if you can feel good about your treatment option you choose to give you the best chance at a cure with the least amount of collateral damage go that route

Good luck and sorry you are here.  Buckle up- its not fun but you will be ok

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