Re-Posted From: TammyC a new member

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wmc
wmc Member Posts: 1,804
edited December 2014 in Head and Neck Cancer #1

TammyC wrote:

My son diagnosed at age 19

Dr Hanna will be overseeing his treatment for olfactory neuroblastoma.  His first appointment is Jan 13, 2015.  His tumor was removed Dec 2, 2014 and biopsy diagnosed him.  They went into the negative margins and feel that the whole tumor was removed, but PET scan lit up in the area of the tumor and small spots on both lungs.  Praying it hasn't mastated yet, strong family history of lung cancer.  He works a full time job and wants to continue working during the radiation.  His manager is not willing to work around drs appointments, which is why its taking so long to get the first visit.   Not sure how work is going to go during radiation.  Any advice you can give that would make this adventure easier on him?  Do you live in Houston or did you have to commute?  Houston is about 100 miles away from us.  Would you reccommend local radiaiton or drive back and forth to Houston? 

 

So glad to hear things are going well for you!  Any long term effects that you are having to adjust to since radiation? 

Thanks for being there for us newbies!

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  • hwt
    hwt Member Posts: 2,328 Member
    #2
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    Tammy

    So sorry to hear about your son's journey. I will certainly remember him in my prayers. I have had numerous PET scans with uptake that turned out to be inflammation so don't draw any assumptions until the facts are known (easier said than done).  I live in St Louis and my original treatment was here. When things got too complex, I went to the Mayo Clinic in MN. and have traveled back and forth many times. I had specialized radiation there (only 5 days worth) but when it came to the chemo, they arranged for it here in St Louis. My opinion would be to ask about having radiaition close to home. If they make the arrangements for you in Houston and Houston stays in close communication with your local facility, it should be fairly easy. Mayo was very good about working with Barnes to meet my needs. Since radiation only takes about 10-15 minutes a day, it would eliminate the stress of travel and expense. Is your son having chemo at the same time?

    Early on, I continued to work but about midpoint in tx. had to stop. I was sleeping non-stop. When I had my originl radiation, I also had chemo (Cisplatin) with it. Uncertain which caused such fatigue. Nutrition and hydration are key!  It is a shame that your son doesn't have a more understanding boss. No one needs that stress on top of cancer. 

    If there is something positive found on his lungs don't just assume it is mets. My brother was told his kidney cancer was mets to lung so he went to Mayo. They asked for a copy of the biopsy, there was none. They did a biopsy and he had two independent cancers both stage one instead of a stage 4 mets. Both were successfully treated.

    I got through by reminding myself to "take it as it comes and deal wth it". Try not to spend time worrying about things that may or may not ever come to happen.

     

    Candi

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #3
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    Tammy, i am so very sorry to

    Tammy, i am so very sorry to hear of your son's cancer.  it is hard enough to accept for anyone but when someone is as young as your son, it makes the pain in the heart a little worse.  i am putting your son and your family in my prayers.  perhaps his youth will help him through this.  please know that we are here for you whenever you need us.  several people here have had their tx locally instead of driving to a big center.  i think its really up to each person.  it has been said that the tx would be the same at either place and it has been said that the big cancer centers are better.  it's half a dozen of one and 6 of the other.  praying for good results with whichever you choose.

    God bless you and your family,

    dj

  • TammieC
    TammieC Member Posts: 6
    #4
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    debbiejeanne said:

    Tammy, i am so very sorry to

    Tammy, i am so very sorry to hear of your son's cancer.  it is hard enough to accept for anyone but when someone is as young as your son, it makes the pain in the heart a little worse.  i am putting your son and your family in my prayers.  perhaps his youth will help him through this.  please know that we are here for you whenever you need us.  several people here have had their tx locally instead of driving to a big center.  i think its really up to each person.  it has been said that the tx would be the same at either place and it has been said that the big cancer centers are better.  it's half a dozen of one and 6 of the other.  praying for good results with whichever you choose.

    God bless you and your family,

    dj

    Thank you for your responses

    I just found both responses.  I'm sorry I was waiting for emails to let me know someone replied.  I'm desparate for advice, which is why I came back on.  My son, who is 20 now (Feb 9th) wants to let the cancer take its course.  I don't think he realizes what he's saying.  I'm concerned he'll change his mind and want to fight the cancer when its too late.  How old is old enough to make this kind of decision?  I want to fight it with him, does that make me selfish?  I posted more information in a new thread earlier, then I remembered this thread and looked it up.  Any words of wisdom would be appreciated.  Please see the new thread for more detailed information.

     

    Thanks so much for your prayers, we need them.  I can't stand the thought of losing him, especially when I feel that we have a chance of fighting it!

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