Post Surgery/Clean PET - recommended radiation treatment?

Arlington Virginia
Arlington Virginia Member Posts: 2
edited August 2017 in Head and Neck Cancer #1

Hi,

Just to be clear, I am not asking about whether she should do radiation - she will, but what kind, and if anyone has a big problem with a somehwat short delay?

My fiancee got oral cancer again (12 years after vanquishing it from her tongue the first time - this time in the mandible/tongue/part of throat) stage 4 and and had flap surgery to remove the tumor and replace from bone and tissue from leg.  Three months later her first PET scan is clean!

 Now doctors are recommending radiation.  Those with a proton machine recommend proton.  Those without proton recommend traditional radiation. I get that they want to kill any remaining cancer cells that cannot now be detected.

Questions:

Does anyone have opinions from their experience on which way to go when there is no tumor?  They are making their best judgments as to where it is most likely to come back as the target.

Can anyone share their experience when getting proton radiation when there is no tumor?

So the literature talks about how targeted it is to not flow through the irradiated site, but stop at the targeted area.  But there are sores, and people report losing hair.  Are those side effects from the entry?  Or is there still some exit burning?

On the delay.  Surgery was in May 2017.  The clean PET (the first post-surgical scan) was in August 2017 (nothing lit up on the scan!)  We have a wedding planned for 9/22 and a honeymoon until October 4.  It is 4 years since I lost my first wife to breast cancer.  My fiancee has never been married (we are both 50 years old).  We understand that it can take weeks for insurance to approve proton radiation (putting it past the honeymoon).  With either radiation, she can get staged and some kind of mask designed and made before/during the wedding and honeymoon so she can start as soon as we get back. We could delay the wedding (and give 150 guests a rain check) if they want to start ASAP, but it seems that at this point they would not be ready to radiate anyway until the week or so before the wedding, so that delay would only be about 2 or 3 weeks.  But it has already been three months now since surgery, and we will be back from our honeymoon in just over 6 more weeks.  Any thoughts on whether this wait is reasonable or not? Most doctors we talk to think it is a reasonable balance with quality of life.  i'm looking for either support for this decision or a damn good reason to move the whole celebration (OK - I understand the "to prevent death" do it sooner because you just don't know part of the equation.)  But if you dont know, how to judge if a little more delay will affect the impact?)

Anything else I should learn about?

Thank you!  I did not find any posts about this circumstance here (no detectable cancer now) or recent comments on proton radiation. 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    welcome

    AV,

    Welcome to the H&N forum, sorry about the cancer which struck a second  time.

    My question, if proton beam is more focused and they are making a judgement call on what they are shooting at, isn’t there a chance that they will miss the lingering cancer cells?  If IMRT is more spread in treatment area, isn’t there a better chance of nailing those stray cells?

    If the cancer is stable, get married and enjoy.  There will be plenty of time for treatment.  If the cancer is aggressive I might change my mind, might.

    Good luck.

    Matt

  • Arlington Virginia
    Arlington Virginia Member Posts: 2
    #3
    CivilMatt said:

    welcome

    AV,

    Welcome to the H&N forum, sorry about the cancer which struck a second  time.

    My question, if proton beam is more focused and they are making a judgement call on what they are shooting at, isn’t there a chance that they will miss the lingering cancer cells?  If IMRT is more spread in treatment area, isn’t there a better chance of nailing those stray cells?

    If the cancer is stable, get married and enjoy.  There will be plenty of time for treatment.  If the cancer is aggressive I might change my mind, might.

    Good luck.

    Matt

    Thank you, Matt.  That's a

    Thank you, Matt.  That's a good question.  I think the doctors are picking the area to irradiate based on their experience of where it can spread.  Surpisingly, both the traditional radiation and proton radiation doctors are in pretty good agreement of the precise locations to irradiate.

    Thank you for your response!

  • soonermom
    soonermom Member Posts: 155
    #4
    My advice

    Get married and really enjoy your honeymoon!!!! 

  • Story1945
    Story1945 Member Posts: 12
    edited August 2017 #5
    What type of cancer does she

    What type of cancer does she have? Where is it located.  Did they have clean margins after removing the tumor?  You only live once!  If they are doing radiation on a precautionary basis, get married and deal with it afterwards.

  • Story1945
    Story1945 Member Posts: 12
    #6
    Nevermind, just reread your

    Nevermind, just reread your comment.  Does her radiology report say anything about vascular involvement?

  • Story1945
    Story1945 Member Posts: 12
    #7
    Did she go through radiation

    Did she go through radiation when she had her first go round 12 years ago?

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