• Radiation experience

    Asked by Dianem on Friday, August 7, 2020

    Radiation experience

    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.

    15 Answers from the Community

    15 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      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.

      about 1 month ago
    • Dianem's Avatar
      Dianem

      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?

      about 1 month ago
    • legaljen1969's Avatar
      legaljen1969

      @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.

      about 1 month ago
    • Carool's Avatar
      Carool

      @Dianem, I too have not had this treatment. I’m writing to send you best wishes in your treatments.

      about 1 month ago
    • po18guy's Avatar
      po18guy

      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.

      about 1 month ago
    • Shelkay1's Avatar
      Shelkay1

      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.

      about 1 month ago
    • JaneA's Avatar
      JaneA

      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.

      about 1 month ago
    • wmsavs' Avatar
      wmsavs

      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.

      about 1 month ago
    • KB2013's Avatar
      KB2013

      Dianem...I am your girl with the experience in brain mets as I’ve had ten. What is it you want to know?

      about 1 month ago
    • Dianem's Avatar
      Dianem

      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..

      about 1 month ago
    • KB2013's Avatar
      KB2013

      Dianem...I never had a mask.

      about 1 month ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @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!!!

      about 1 month ago
    • Dianem's Avatar
      Dianem

      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?

      about 1 month ago
    • KB2013's Avatar
      KB2013

      Ten mets over a five year period. Had GammaKnife. Masks are used for whole brain radiation, mine were targeted individually.

      about 1 month ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      @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!

      about 1 month ago

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