Radiation Oncologist in Denial

D Lewis
D Lewis Member Posts: 1,581 Member
in Head and Neck Cancer #1

Today I had my 3-year follow-up appointment with my local chemo oncologist and radiation oncologist.  They are now seeing me every six months. These folks are different from my local ENT and my Stanford Head/Neck Surgical Oncologist who seem to be doing me a lot more good.  I attempted to initiate a conversation with my Radiation doc about osteoradionecrosis of the jaw, and she was no help at all. She claims it is a non-issue. 

A local head/neck cancer buddy she treated at the same time she treated me is now losing his teeth.  She informed me that she knew of him, and he was losing his teeth as a result of his chemo, and his medications, and NOT as a result of ORN.  Um. Ok. That is not what his dentist is telling him.

This is the same gal who told me I couldn't use the dental trays my dentist made for me to prevent radiation scatter. She also told me that I had no need for amifostine. Kind of wishing I'd put up more of a fight, back then.  

Oh well.  Water under the bridge...  It certainly isn't water in my mouth, BECAUSE THERE ISN'T ANY.  OK, vent over.

Deb (thriving in spite of it all)

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
    side effects us all, chomp on that

    Dear Deb (thriving in spite of it all),

    Other than asking for a personal call (rad onc) from my dentist to confirm the status of my teeth (pre-zap), I received no heads up or warnings about future damage to my teeth.  They did have me put in dental rolls (4) every time before rads, they were not made of lead so I really do not know what they did for teeth protection.

    As far as I know, both my rad and chemo onc cut me loose at 9 months post and left everything (exam wise) up to my ENT and with the ever changing health care I have no idea on future exams.

    I am going to put in a call to my rad onc and ask about my teeth, down the road.  Now that is a simple study a person could put together.  Basic question “are your teeth ok since rads?”

    Good vent, now carry on.

    Matt

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
    So Deb

    Why do you see this person?  I had this kind of help locally with my first cancer years ago.  I left town, drove 350 miles, found the right guy, and stuck with him.  I have never been back to see the local guy, nor will I.  Life is too short.  And I don't need the heartache.

     

    Pat

  • KTeacher
    KTeacher Member Posts: 1,103
    #4
    Sorry Deb

    The only doc that I seem to get info out of is Dr. at Stanford.  My local chemo guy is academic, he has a great staff though.  At this point I don't see him, only draws blood, not much input.  My rad guy just moved on.  He was caring and listened but usually referred me on to another.  I wasn't happy with his sub, don't know yet who they hired for the job.  I am currently having headaches and jaw pain.  Boy, did I get a PET Scan fast, I was gearing up for the fight but the pain came first.  Just had the PET yesterday, not scheduled with Stanford until August, will try to move up that date.

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #5
    KTeacher said:

    Sorry Deb

    The only doc that I seem to get info out of is Dr. at Stanford.  My local chemo guy is academic, he has a great staff though.  At this point I don't see him, only draws blood, not much input.  My rad guy just moved on.  He was caring and listened but usually referred me on to another.  I wasn't happy with his sub, don't know yet who they hired for the job.  I am currently having headaches and jaw pain.  Boy, did I get a PET Scan fast, I was gearing up for the fight but the pain came first.  Just had the PET yesterday, not scheduled with Stanford until August, will try to move up that date.

    KT

    Thank goodness for Dr. Kaplan.  Here's hoping for the very best outcome possible on that PET scan...  Keep up the fight.

    Deb

  • KTeacher
    KTeacher Member Posts: 1,103
    #6
    D Lewis said:

    KT

    Thank goodness for Dr. Kaplan.  Here's hoping for the very best outcome possible on that PET scan...  Keep up the fight.

    Deb

    Congrats!

    BTW, Congrats on 3 years.  I am 3 years but only 1 year each time :).  I see Dr. Sunwoo at Stanford.  Started with Dr. Yao, he moved back east--my doctors seem to move!  Hopefully feeling better soon so we can finally meet.  We might want to go 'west' and find a spot for the Berkley and Oakland people to meet also.

  • hwt
    hwt Member Posts: 2,328 Member
    #7
    KTeacher said:

    Congrats!

    BTW, Congrats on 3 years.  I am 3 years but only 1 year each time :).  I see Dr. Sunwoo at Stanford.  Started with Dr. Yao, he moved back east--my doctors seem to move!  Hopefully feeling better soon so we can finally meet.  We might want to go 'west' and find a spot for the Berkley and Oakland people to meet also.

    Deb

    Seems like my chemo ONC blamed everything on my rads and the radiation ONC blamed it on the chemo. I think it was the rads. I am a year post tx and my surgeon still wants another year at 3 mo. intervals, the radiation ONC is 3-4 months and the chemo ONC went to 4 months. My primary physician is every 6 mos. Since the chemo ONC orders my scans they have moved to 4 months.

  • katenorwood
    katenorwood Member Posts: 1,912
    #8
    Hello Deb !

    I chuckled at your post.  Been there done that with other issues.  Aint it a hoot that some doctors love to pass the preverbal puck back and forth ?  When in the hospital during rads, and no-one could figure out why I was bleeding and unable to function....the rad dr. said it was from surgery...the ENT scoped saw the damage and said it was from rads.  Never did find out who was right or wrong.  Kinda blew me away, as they were the specialists.  Needless to say I'm no longer with that clinic.  I love reading your posts....you are so down to earth and honest !  Hugs sent Katie

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