PROTON THERAPY???

Options
tuffenuff
tuffenuff Member Posts: 277
in Head and Neck Cancer #1
Having been recently diagnosed with SCCHN, I contacted one of the proton therapy centers here in town. All I had read said that SCCHN was one of the types which is successfully treated with proton. The response I received was that I am not a candidate because they have no protocol for tonsil cancer. Has anyone out there had proton therapy for SCCHN, and if so... Where was your cancer located?

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    Options
    I did the same thing as you....
    got all excited about the possibility of having Proton Radiology, because of what I read on the internet...was going to head to Texas. However, Proton Therapy is still just being "looked at" for HNC...they're still trying it out. IMRT is the standard, but there seems to me to be another "new" IMRT that has tomography....I've heard other folks on here talk about that type of IMRT.

    p
  • tuffenuff
    tuffenuff Member Posts: 277
    #3
    Options
    phrannie51 said:

    I did the same thing as you....
    got all excited about the possibility of having Proton Radiology, because of what I read on the internet...was going to head to Texas. However, Proton Therapy is still just being "looked at" for HNC...they're still trying it out. IMRT is the standard, but there seems to me to be another "new" IMRT that has tomography....I've heard other folks on here talk about that type of IMRT.

    p

    I'm sure I will have a
    I'm sure I will have a pretty good option. I'm in Jacksonville FL and we have UF/Shands, Mayo Clinic Cancer Center and a really good Head and Neck Team at Baptist Hospital. I am just now looking up the different types radiology stuff.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    Options
    IMRT - Tonsils
    I think you are going to find that the majority of facilities are using some form of IMRT...

    and BTW, I think IMRT has successfully treated many on this forum.

    JG
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    Options
    tuffenuff said:

    I'm sure I will have a
    I'm sure I will have a pretty good option. I'm in Jacksonville FL and we have UF/Shands, Mayo Clinic Cancer Center and a really good Head and Neck Team at Baptist Hospital. I am just now looking up the different types radiology stuff.

    Lakeland...
    Lakeland here....

    JG
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #6
    Options
    Skiffin16 said:

    Lakeland...
    Lakeland here....

    JG

    Wow ....
    tuffenuff ....you do have some great facilities nearby ...my mom lives in Daytona Beach and my Uncle used to live in Jacksonville before he died (old age)....so one thing for sure ...you will be in great hands either way...

    Keeping you on the prayer list btw... :)


    Tim
  • RyanStephens
    RyanStephens Member Posts: 1
    #7
    Options
    Based on your proximity to the Jacksonville I would've recommended the UF Proton Center located there; however, if they have no protocol for tonsil cancer you may want to have a peek at other locations like Loma Linda in California, Mass General in Boston, or MD Anderson in Houston.

    For mouth/throat cancers Loma Linda may only treat cancer Oropharynx (per their website), but I believe the other two institutions may have some experience with SCCHN.

    I have not found any specific instances of proton centers treating SCC of the tonsils; however, Mass General does do SCC's per their website: http://www.massgeneral.org/conditions/condition.aspx?id=448

    And MD Anderson has a video testimonial of a patient who chose protons for his squamous cell carcinoma of the head & neck. You can watch that here: http://www.youtube.com/watch?v=bBwuGpHnfII

    Hope those resources help a little. Mainly, I'd urge you to be your own advocate, do as much research and ask as many questions as possible. What made the most sense for someone else won't necessarily make the most sense for your situation.

    Best of luck to you!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
    Options
    RyanStephens said:

    Based on your proximity to the Jacksonville I would've recommended the UF Proton Center located there; however, if they have no protocol for tonsil cancer you may want to have a peek at other locations like Loma Linda in California, Mass General in Boston, or MD Anderson in Houston.

    For mouth/throat cancers Loma Linda may only treat cancer Oropharynx (per their website), but I believe the other two institutions may have some experience with SCCHN.

    I have not found any specific instances of proton centers treating SCC of the tonsils; however, Mass General does do SCC's per their website: http://www.massgeneral.org/conditions/condition.aspx?id=448

    And MD Anderson has a video testimonial of a patient who chose protons for his squamous cell carcinoma of the head & neck. You can watch that here: http://www.youtube.com/watch?v=bBwuGpHnfII

    Hope those resources help a little. Mainly, I'd urge you to be your own advocate, do as much research and ask as many questions as possible. What made the most sense for someone else won't necessarily make the most sense for your situation.

    Best of luck to you!

    MD Anderson
    There is one in Orlando also....

    But I think MD ANderson is more into IMRT treatment for H&N;

    MD Anderson - Orlando

    JG
  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
    Options
    Skiffin16 said:

    MD Anderson
    There is one in Orlando also....

    But I think MD ANderson is more into IMRT treatment for H&N;

    MD Anderson - Orlando

    JG

    Proton Therapy / Cyberknife
    Just wish it was available beck when I was going through treatment, both are far better than the standard Radiation treatment.

    Just my take
    Hondo
  • tuffenuff
    tuffenuff Member Posts: 277
    #10
    Options
    Hondo said:

    Proton Therapy / Cyberknife
    Just wish it was available beck when I was going through treatment, both are far better than the standard Radiation treatment.

    Just my take
    Hondo

    My mother watched my
    My mother watched my grandmother go through chemo and rad in the 1970s. I'm counting my blessings knowing that whatever treatment I end up taking, it will be nothing like it was back then.
  • rudy
    rudy Member Posts: 2
    edited June 2016 #11
    Options
    tonsil cancer

    I had cancerous tonsil, as well as the healthy one removed surgically in Minot, Nd. [ by a less than ept Dr. ] . I came to Texas Center for Proton Therapy 1501 West Royal Lane Irving, Texas 75063 Ph.469-513-5500. I am being treated w/Proton and was told could have been treated w/out removal of tonsils. This is a much better treatment than conventional radiation as witnessed by the large number of countries building these facilities. Good fortunes to you on your quest. P.S. Arrange for a long stay [ 7 to 10 weeks ] before you arrive as the motel housing can cost $287 to $>/week. 

  • the_wife
    the_wife Member Posts: 184
    #12
    Options
    proton

    I hear that Mayo in MN is has started a new protocol using proton beam therapy for head and neck cancers. Sounds very cutting edge and no doubt a great improvement over the current method. Best of luck to you -  let us know what treatment plan you end up with!

  • MJG1
    MJG1 Member Posts: 137 Member
    edited July 2016 #13
    Options
    Proton Therapy

    Siteman Cancer Center has been using Proton Therapy since 2013, but I can't find articles about it being used specifically for Head and Neck cancer patients.  Does anyone have experience with this therapy at Stieman with Head and Neck Cancer?

     

  • Nancy24
    Nancy24 Member Posts: 72 Member
    edited July 2016 #14
    Options
    Proton at Scripps

    my husband is currently undergoing Proton therapy and chemo (Cisplatin) at Scripps in San Diego. He has HPV positive oropharyngeal cancer. Primary tumor is in left lingual tonsil at base of tongue with masses in two lymph nodes on left side of neck. He chose not to have surgery. Tomorrow is the end of week 2. His radiation oncologist specializes in proton for head and neck cancer. Scripps proton center has been open for three years and has pencil beam capability. Prior to being at Scripps, his oncologist was at Loma Linda. We had first contacted Loma Linda and they referred us to Scripps and Seattle. We were told that results will be the same as using IMRT but side effects may be less due to no exit radiation damage. 

Discussion Boards