metastasis from head and neck.

biggles1955
biggles1955 Member Posts: 15 Member
edited February 2014 in Brain Cancer #1

Hi everyone, Well I thought I was doing well. Chemoradiation for head and neck scc completed3/8/12, pet/ct scan november revealed a lesion in left lower lobe of lung, resulting in lobectomy. pet/ct nov 2013 showed clear!! So I was over the moon. However its all gone wrong. GP referrred me to hospital for ct brain because of symptoms representing potential stroke. Revealed a large patch of oedema right frontal lobe under which there is a lesion measuring 2 x 1 cm x 1.5mm thick, apparently classic of a metastasis from known primary ( Base of Tongue scc)My oncologist ordered an urgent pet/ct scan for yesterday....so waiting his phone call for reults. in the meantime googled options for treatment. Seems to be surgery or stereotactic radio surgery or both. |Anyone here any experience plesse???! I'm scared to hell of having surgery to my brain||||||||||||||||!!!

Comments

  • mccindy
    mccindy Member Posts: 81
    #2
    brain surgery

    brain surgery itself isn't really all that bad.  I've been through it and I know a lot of other people who have been through it.  Make sure your neurosurgeon is very experienced and has done a lot of them, and you should be good to go.  The recovery can actually be better than recovery from other surgeries.  Don't panic, ask lots and lots of questions, and try to stay calm!  Best of luck.

  • rdn2blazer
    rdn2blazer Member Posts: 46
    #3
    Brain surgery was not fun but not as bad as expected...

    Now having 1/3 of my right lung removed, and even the Biopsy surgery to check my Lymph Nodes was a living nightmare to recover from. Worst ppain physically I have ever experienced, and I've been through a heel of alot of pain in my life. Very worst part of BS is having to sleep sitting up for months. I almost died and was back at work in 6 minths. I walked it off, for the win! lol

  • biggles1955
    biggles1955 Member Posts: 15 Member
    #4
    rdn2blazer said:

    Brain surgery was not fun but not as bad as expected...

    Now having 1/3 of my right lung removed, and even the Biopsy surgery to check my Lymph Nodes was a living nightmare to recover from. Worst ppain physically I have ever experienced, and I've been through a heel of alot of pain in my life. Very worst part of BS is having to sleep sitting up for months. I almost died and was back at work in 6 minths. I walked it off, for the win! lol

    After 3 opinions I have

    After 3 opinions I have elected to go for Cyberknife stereotactic radio surgery. The man says he can blast it in one 60 minute treatment. Fingers crossed!!

  • mobmob
    mobmob Member Posts: 14 Member
    #5
    Cyberknife
    I had endometrial cancer that metastasized to the brain. I had cyberknife treatments for eight brain metastases-- six of the brain mets are gone completely, two remain. Those remaining brain mets do not cause any symptoms and are considered "stable." I found the cyberknife treatments to be very doable. I did have fatigue afterwards for a good four to six weeks.
    I did not like the effects of the decadron that I had to take for about a week. Decadron makes you very hyper and prevents you from sleeping. It also prevents swelling. All in all, I was very glad to have been offered this form of treatment. I am so glad I avoided whole brain radiation which would have been an alternate therapy.
  • mobmob
    mobmob Member Posts: 14 Member
    #6
    Cyberknife (cont)
    I realize that I'm not being specific as regards the length of time that my fatigue lasted. That is because, at this point, I do not really remember. I think I had fatigue for at least four weeks, though. I also experienced buzzing in my ears and some headaches. All symptoms resulting from the Cyberknife treatment eventually subsided.
  • mobmob
    mobmob Member Posts: 14 Member
    #7
    Cyberknife (another addendum)
    I forgot I do have one symptom that may be from one of the brain mets. One remaining tumor is above my right ear. That ear feels blocked at all times. I've had my hearing tested twice and the ear specialists say my hearing is within the realm of normal for my age and that they don't think my symptoms have any cause having to do with my hearing. The brain specialist says my symptoms have nothing to do with any tumor. (So I guess the symptom is there for no reason at all!)
    I'm sure all of this has nothing to do with your particular situation, but I'm just trying to make my information accurate in case it might be useful for someone else.
  • biggles1955
    biggles1955 Member Posts: 15 Member
    #8
    mobmob said:

    Cyberknife (another addendum)
    I forgot I do have one symptom that may be from one of the brain mets. One remaining tumor is above my right ear. That ear feels blocked at all times. I've had my hearing tested twice and the ear specialists say my hearing is within the realm of normal for my age and that they don't think my symptoms have any cause having to do with my hearing. The brain specialist says my symptoms have nothing to do with any tumor. (So I guess the symptom is there for no reason at all!)
    I'm sure all of this has nothing to do with your particular situation, but I'm just trying to make my information accurate in case it might be useful for someone else.

    Thank you all for your

    Thank you all for your replies. Looking forweard to getting it zapped and getting on with life !!

  • rdn2blazer
    rdn2blazer Member Posts: 46
    #9
    biggles1955 said:

    Thank you all for your

    Thank you all for your replies. Looking forweard to getting it zapped and getting on with life !!

    We all wish you the very best

    We all wish you the very best in treatment and recovery. My tumor was too big for Gammaknife. I consulted with Cedars Sini about it aafter all my surgeries we done at UCLA. The doctor I had a meeting with and I brought all my MRI images, paper work so he could see my case, he said my tumor was too big, and based on what he saw, UCLA did a great jub in treating me with the One radiation treatment that was not whole brain rad. He said now if any tumore come back and we can treat before they get to a spicific size, Gammaknife IS an option. It's safer then traditional radiation. More accurate targeting then radiation, and causes less surounding tissue damage then radiation. I redearched all about after I went through my stuff. Good luck. Prayers sent to you.

  • biggles1955
    biggles1955 Member Posts: 15 Member
    #10
    rdn2blazer said:

    We all wish you the very best

    We all wish you the very best in treatment and recovery. My tumor was too big for Gammaknife. I consulted with Cedars Sini about it aafter all my surgeries we done at UCLA. The doctor I had a meeting with and I brought all my MRI images, paper work so he could see my case, he said my tumor was too big, and based on what he saw, UCLA did a great jub in treating me with the One radiation treatment that was not whole brain rad. He said now if any tumore come back and we can treat before they get to a spicific size, Gammaknife IS an option. It's safer then traditional radiation. More accurate targeting then radiation, and causes less surounding tissue damage then radiation. I redearched all about after I went through my stuff. Good luck. Prayers sent to you.

    THank you all for your

    THank you all for your replies. Had the single Cyberknife treatment last Friday, now playing the waiting game again until the first MRI and hoping it shows at least shrinkage if not total ablation. Its the waiting that causes anxiety. Best wishes to you all.

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