Radiation experience

Dianem
Dianem Member Posts: 11
edited January 2021 in General Cancer
I’ve just been told that my lung cancer has metastasized to two spots in my brain and I will need radiation. So I feel a little blindsided right now. I’m looking to learn what others might have experienced. Thanks for any input.

Comments

  • LiveWithCancer
    LiveWithCancer Member Posts: 470
    edited January 2021
    Oh no, @Dianem. I can't say how much i hate to hear this news.

    I have never had radiation for brain mets (have avoided those so far), but have plenty of friends who have had to deal with them. What little I know (and remember) is that if you can have cyberknife instead of whole brain radiation, it is preferable.

    Most of my friends have tolerated the treatments well and come away with no adverse side effects that I am aware of.

    Hugs and prayers, my friend.
  • Dianem
    Dianem Member Posts: 11
    edited August 2020
    Thanks for the kind thoughts. I did want to hear about those who have tolerated the treatments. Because if you read the literature they offer regarding side effects it scares the bejesus out of you. Hugs back at you. How are things going for you and Robert?
  • legaljen1969
    legaljen1969 Member Posts: 763
    edited August 2020
    @Dianem, I have no experience to offer in this post. I just want to say I am sending out lots of positive thoughts that you are able to get great advice and the most effective, least invasive treatment possible.
  • Carool
    Carool Member Posts: 787
    edited August 2020
    @Dianem, I too have not had this treatment. I’m writing to send you best wishes in your treatments.
  • po18guy
    po18guy Member Posts: 329
    edited August 2020
    Rats! I had total body irradiation to kill my marrow, but it was not brain-specific - my head sustaining only collateral damage. The location of those tumors (and the radiation) will help to predict what potential other effects the rads might have. Still, I have interacted with others who had cyberknife and that is the clear choice if it is appropriate.
  • Shelkay1
    Shelkay1 Member Posts: 1
    edited August 2020
    Get in touch with one of the large groups that work with lung cancer specifically. Lungevity or GO2. They have a lot of members who have dealt with brain mets who can help you out.
  • JaneA
    JaneA Member Posts: 335
    edited August 2020
    I have known several people who had cyberknife (SBRT) for brain mets from colon cancer. They tolerated it quite well. I had SBRT radiation for a lung met, and it was the easiest part of my treatment, except that you have to keep really still. Best wishes - we're here for you.
  • wmsavs
    wmsavs Member Posts: 16
    edited August 2020
    Hi @Dianem, sorry for joining you so late but we've interacted with a few people who have endured the process. All the people we know have handled the Cyberknife method. Probably the most difficult aspect, at least from their perspectives is to remain stable for about 45 minutes to allow construction of a mask. After that it is a breeze with probably the most difficult being to get your head exactly in the position for treatment while lying with the side they need to radiate. The entire procedure is less than 5 minutes and as @JaneA stated, "keeping really still" is imperative.
  • KB2013
    KB2013 Member Posts: 62
    edited January 2021
    Dianem...I am your girl with the experience in brain mets as I’ve had ten. What is it you want to know?
  • Dianem
    Dianem Member Posts: 11
    edited August 2020
    Thank you ive been bombarded with info about side effects and after effects. Right now everything seems to be in order. Ive been fitted for masks and I’m scheduled for one treatment to radiate two spots. I think I just have to focus on all the people who have this for whom it goes right. You sound like one..
  • KB2013
    KB2013 Member Posts: 62
    edited August 2020
    Dianem...I never had a mask.
  • LiveWithCancer
    LiveWithCancer Member Posts: 470
    edited August 2020
    @DianeM, when do you go for your cyberknife treatments? I think you are going to be pleasantly surprised by how well it goes and how effective they will be. That's my prediction and my prayer!!!

  • Dianem
    Dianem Member Posts: 11
    edited August 2020
    Kb2013, I do have a question or two. You said you had 10 brain Mets.all at once or more than once. Were they treated with radiation. Do you have ongoing side effects? Thanks

    Live with cancer. I don’t think I’m having cyberknife. I’m just having radiation to the brain. I’m not sure what the difference is. I’m just doing what my oncologist and the radiation oncologist recommend. It’s just one session on Thursday. These folks haven’t steered me wrong yet. Thanks for the prayers. How is Robert doing?
  • KB2013
    KB2013 Member Posts: 62
    edited August 2020
    Ten mets over a five year period. Had GammaKnife. Masks are used for whole brain radiation, mine were targeted individually.
  • LiveWithCancer
    LiveWithCancer Member Posts: 470
    edited August 2020
    @Dianem, I'll be praying extra hard on Thursday!

    You're taking the same attitude as I have with the spot they found on my lung on the last scan. My oncologist suggested waiting and watching. He asked if I trusted him and I told him I wouldn't be here without him so I trust him to not to steer me wrong.

    Robert is doing better. We finally have three different therapists coming 2X a week to work with him. Hopefully, his balance will get a lot better (he was having significant issues even before the stroke) and his other issues will improve, too, over time. It is not a great situation, but could have been so, so much worse!!!! Thanks for asking!

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