Proton or IMRT

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MikeG56
MikeG56 Member Posts: 5
edited August 2020 in Head and Neck Cancer #1

I have HPV tonsil and back of tonge cancer spread to lymph node {T2 N1 M0}. I will be starting radiation treatment and weekly chemo. My question is I was suppose to start IMRT radiation and weekly cisplatin next Monday and just found out my insurance approved Proton Treatment but the hospital MD Anderson will not have a open spot for proton treatment for 6 weeks. Wondering if I should wait another 6 weeks for proton treatment or just go ahead and start regular IMRT treatment. Thank's 

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  • wbcgaruss
    wbcgaruss Member Posts: 2,294 Member
    #2
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    Mike This Decision

    I wouldn't want to make for another but I can help with info. Proton therapy can be closely regulated to zap the tumor or cancer and be set to stop at a point they determine. So when they focus on the tumor it goes in but they can even control the area where it stops so when it gets to the end of the tumor it stops and doesn't hit surrounding tissues or organs. So they may hit your tonsil or tongue but save all surrounding areas. This I understand is not perfect you still get some outside damage I think but it is way way less and this is the greatest thing for Head & neck where so many things are affected like swallowing, breathing, smell, taste, saliva, etc. I would confer with your medical team and get their opinion on waiting for the 6 weeks. Unless your cancer is fast-growing it may be worth the wait. Talk to your team. Here are a couple of links where you can read about it. The thing about cancer in general and Head & Neck cancer specifically many times it is a one-shot deal whereas you want the best possible results the first time because there is not a second chance to step back once the throat or some other area is damaged from radiation there is not much that can be done. There are folks on here with severe radiation damage leftovers and it changed their life forever. Some are on a permanent feeding tube. I am not trying to scare you but just to let you know this is serious business and you need to make the decision with your cancer team for the best results possible. Links below good explanations--

     

    https://www.proton-therapy.org/science/

     

    https://www.cancer.gov/news-events/cancer-currents-blog/2020/proton-therapy-safety-versus-traditional-radiation

     

    Good luck on your decision-Take Care-God Bless

  • Logan51
    Logan51 Member Posts: 465 Member
    #3
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    Mike

    When were you diagnosed? And when did you know you had an issue?

    I first noticed 2 enlarged lymphs on the left side of my throat in mid-November of 08. Surgical biopsy came over a month later, followed by Power Port and FT. My 1st week of Rads came the 1st week in February 09. I note this to highlight the length of time. 

    I was unknown Primary, so they zapped me in 20 places/session x 34, with concurrent Chemo. You've got the tongue, but did it first show in a lymph? I ask because I'm the punching bag that Rads did a permanent number on me and I'll only eat via FT for what's left of my life. 

    My advice: inquire from your C Dr./team if they think you can afford to wait 6 weeks. Proton would be a lot friendlier than IMRT. Might be taking a chance on it spreading more places, but maybe not. My Dr.s obviously didn't think mine would with how long they waited to start treatment. Course, that might also why they did the overkill on the Rads...

    Good luck, and keep us updated on what's what. We all survive the 1st bout with C for a minimum of 5-7 years, and most for far more. I'm 11 years & 4 months. 

  • MikeG56
    MikeG56 Member Posts: 5
    edited August 2020 #4
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    Proton or IMRT

    ?

  • MikeG56
    MikeG56 Member Posts: 5
    edited August 2020 #5
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    Proton or IMRT

    Thank's for your advice. I grew a beard for about 6 months and when I shaved it off I noticed a lump on left side of neck. I called and tried to make an appointment while c 19 virus going on with my PCP and he gave me antibotics to take for 10 days. That did not help so I did a ultrasound and that showed abnormal tissue. Next did biospy and it showed I had squamous cell carcinoma. I went to ENT and he saw left side of tonsil swollen and infected and wanted to do surgery and neck dissection. I wanted a second opinion and went to MD Anderson . They said no surgery and to treat it with radiation and cisplaten. Dr suggested proton radiation for treatment but insurance denied . I filed appeal and then they approved treatment.  I don't believe MD Anderson thought insurance would approve proton treatment so they scheuled me for IMRT radiation to start on 8/10/20. On 8/4/20 Insurance told me I was approved so I called doctor to let him know and that is when he told me that the Proton Center did not have any openings until Sept 14 2020 and that I should consider regular IMRT radiation and then he said proton treatment  was not proven to be any better. After I fought to have insurance aprove proton treatment , he tell me I should consider IMRT since it is scheduled to start on 8/10/20.

  • skidog
    skidog Member Posts: 74 Member
    edited August 2020 #6
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    MikeG56 said:

    Proton or IMRT

    ?

    go Proton

    Mike, look up my first post. I'm 2years out from Proton therapy. right tonsil and right lymph node. the doc who told you protons no better than IMRT must not have been talking about post treatment. many studies to prove proton is less dmaging. I'm proof as well. I too was denied and fought to get Proton at Mayo clinic in Rochester MN. From the time I was diagnosed to the time of my first rad treatment was 6 weeks.

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #7
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    If your insurance approved it then go for proton

    It does seem to be less harsh with side effects though at this point doesn't appear to be better or worse than IMRT at actually defeating the cancer.  So, as long as it's not going to make you mortgage your house...proton would probably be worth the shot.  As an fyi, if you had chosen surgery first you'd be waiting 6 weeks for rads to begin anyway...so the wait, as long as it's within 6 or so week is probably a non-factor.

     

    brandon

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