Donna B ~ To Radiate or Not To radiate...That's the Question...

Skiffin16
Skiffin16 Member Posts: 8,305 Member
in Head and Neck Cancer #1

Reposted for a first time poster,,,


 


Posts: 1
Joined: Mar 2013
Mar 18, 2013 - 1:07 pm


New

This is my first time on this sight. My case is a bit different from those I've read, although similar enough for someone out there to help, I'm sure. In january, I had surgery for stage 1 tongue cancer with perineural invasion. No lymph nodes involved. One-helf of my tongue was reconstructed and I had a neck resection. After surgery my surgeon said I was "cancer free"" and said no further treatment would be necessary. Yeah! Now, eight weeks later, he has changed his mind. He missed reading in the biopsy report about the perineural invasion, which means recommending radiation. (the nerve issue was in only the biopsy, not the after surgery report, which showed that everything was gone). Anyway, after two visits to a radiologist, I'm left with the decision whether to radiate or not. I'm "borderline" and it's my decision. "Studies" recommend the radiation just to be sure. After reading all the side effects of the rad/chemo, I'm scared and confused. Anyone out there have my type of cancer? Anyone NOT have the treatment? Thanks.

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Good Question - Tough Answer...

    Welcome Donna...

    I guess it comes down to;

    How Lucky Do You Feel

    Like Matt mentioned in his post on the older thread... My MD's took the aggressive approach in hopes of killing everything up front (just short of killing me)...

    I was STGII Tonsils and a lymphnode...sixteen weeks, four types of chemo and 35 days of radiation concurrent with one type of weekly chemo.

    That was nearly four years ago....

    While my cancer was less advanced than yours... Cancer is Cancer...

    So you can go with your gut..., go with your MD's recommendation..., or get a second opinion and weigh the avearge between the two...

    Yes, radiation does take a toll, has it's own set of risks and long term effects. Taste and saliva being one that will more than likely be effected for several months.... But it does a pretty good job of killing off any stray cancer cells floating around as well does the chemo.

    Tough decisions...

    Best,

    John

     

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    Skiffin16 said:

    Good Question - Tough Answer...

    Welcome Donna...

    I guess it comes down to;

    How Lucky Do You Feel

    Like Matt mentioned in his post on the older thread... My MD's took the aggressive approach in hopes of killing everything up front (just short of killing me)...

    I was STGII Tonsils and a lymphnode...sixteen weeks, four types of chemo and 35 days of radiation concurrent with one type of weekly chemo.

    That was nearly four years ago....

    While my cancer was less advanced than yours... Cancer is Cancer...

    So you can go with your gut..., go with your MD's recommendation..., or get a second opinion and weigh the avearge between the two...

    Yes, radiation does take a toll, has it's own set of risks and long term effects. Taste and saliva being one that will more than likely be effected for several months.... But it does a pretty good job of killing off any stray cancer cells floating around as well does the chemo.

    Tough decisions...

    Best,

    John

     

    hey I feel off the moving truck

    Donna b,

     

    Welcome to the H&N forum and at the same time I am sorry you find yourself here.  With what I guess are residual cells floating around the decision to not radiate sound wrong.  I am not a doctor so really do not know your case very well.  Most likely, after your team has studied your case they will develop a plan to give you the greatest chance of survival “caner  free”.

     

    I on the other hand went to the school of “throw the book at it” i.e. surgery, radiation and Erbitux.

     

    There have been some rough times but I am bouncing back and feeling pretty good.

     

    On a side note, you have posted in an older thread and these generally do not get as much attention.  You should repost by starting a new thread (top of page) then simply tell your story again.  I guarantee it will work.

     

    Matt

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #4
    Welcome Donna

    I will not share my horror story, you can pm me if you want to hear more.  My 'c' was not tongue but right upper lip.  What we do have in common is perineural involvement--don't play around, get the radiation, you want to kill any cells that are moving up the nerves.  Radiation is not fun, really the radiation session itself is not bad, it's the side effects.  I am still glad to be here, even with the side effects.

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #5
    Skiff

    Thank you so much for reposting.  Your computer knowledge amazes me.

  • jcortney
    jcortney Member Posts: 503
    #6
    Donna,My disease is

    Donna,

    My disease is completely different than yours.  My treatment is not even close to the same.  But, I'd like to share with you a story my Medical Oncologist told me when I was undergoing treatment.  I had just finished 3 rounds of Induction Chemo which, if you are unfamiliar with it, well let's say they try and kill you. :)  After I was finished and my tumors (Base of Tongue and lymph nodes) had shrunk completely back to normal and I had no pain whatsoever I asked my doc did I really need to have radiation.  His answer was "I've lost only one patient to your disease and that was the one of three patients that refused radiation".  I didn't like the odds so I went through with the Rads.  I'll be honest, it was really rough, especially at the end.  But now I'm just over 6 weeks post treatment and I'm starting to feel a bit like my old self.  I was scared to the point of not sleeping, I was sure I'd never make it through but now it's done and I'm glad I put the odds on my side.

    Whatever you decide I wish you the best of luck. You already showed you can have good luck by finding this place.  It has the most knowledgeable and caring people you'll ever meet or need.

     

    Joe Cortney

    Dallas, TX

  • meaganb
    meaganb Member Posts: 244 Member
    #7
    I had a different type of

    I had a different type of cancer. Mine was in my salivary gland, Adenoid Cystic Carcinoma. I had perineural invasion & my docs never made it seem like I had a choice. I wastold to have radiation. It is hard although some people do sail through with few side effects. I amglad I had Rads. Even if the cancer comes back I know I've done everything within my power to prevent that.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
    Skiffin16 said:

    Good Question - Tough Answer...

    Welcome Donna...

    I guess it comes down to;

    How Lucky Do You Feel

    Like Matt mentioned in his post on the older thread... My MD's took the aggressive approach in hopes of killing everything up front (just short of killing me)...

    I was STGII Tonsils and a lymphnode...sixteen weeks, four types of chemo and 35 days of radiation concurrent with one type of weekly chemo.

    That was nearly four years ago....

    While my cancer was less advanced than yours... Cancer is Cancer...

    So you can go with your gut..., go with your MD's recommendation..., or get a second opinion and weigh the avearge between the two...

    Yes, radiation does take a toll, has it's own set of risks and long term effects. Taste and saliva being one that will more than likely be effected for several months.... But it does a pretty good job of killing off any stray cancer cells floating around as well does the chemo.

    Tough decisions...

    Best,

    John

     

    Ummm Correction, LOL...

    I was actually STGIII, and I mean't my cancer being a little more advanced than yours...

    JG

  • phrannie51
    phrannie51 Member Posts: 4,716
    #9
    I went to the same school as the others....

    hit it with everything there is....rads included.  I'm relieved that I saw post from you asking about Radiologists in the SoCa area....I can sure understand how you must have felt getting thru the surgery...thinking phew, got through that....only to find out they now want to do more.  When rads are over, and behind you, you can rest easier that you did everything in your power to send cancer packing. 

    I had 35 rads along with 3 chemo treatments....then another 3 adjuvant chemos when radiation was done.  The temptation to skip the last chemo was huge....today I'm back working, feeling pretty close to normal, and VERY glad I didn't take any shortcuts.

    p

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