• Asking for your feedback on Dr. recommended treatment

    Asked by Stew on Tuesday, January 8, 2019

    Asking for your feedback on Dr. recommended treatment

    As a result of the last two CT scans on my lungs coming back clear after chemo treatment, my Dr is recommending radiation treatment on my brain (Prophylactic Cranial Irradiation) as a preventive treatment since small cell lung cancer frequently metastasizes to the brain.

    I would greatly appreciate feedback from anyone who has knowledge of; or has received this treatment.

    Thanking you in advance for your help.

    10 Answers from the Community

    10 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      I don't have any k owledge about the preventative radiation, but wanted to say yay! about the fact that you've had two clear scans.

      2 months ago
    • Stew's Avatar
      Stew

      Thank you so much for replying! The clear scans have definitely been great news to receive.

      2 months ago
    • po18guy's Avatar
      po18guy

      I would certainly seek a second opinion on any prophylaxis, as opinions can and do vary. If you are not being treated at a National Cancer Institute designated comprehensive cancer center, it is 100% worth the time and effort to seek an opinion at such a facility. Doing so saved my life. Find the nearest center here; https://www.cancer.gov/research/nci-role/cancer-centers/find

      2 months ago
    • wmsavs' Avatar
      wmsavs

      Hi Stew. Congratulations for the two clear CT scans of your lungs. What kind of doctor recommended radiation treatment as preventive treatment? When was an MRI of the brain done? I see you mention a stage being excessive within you profile. What stage (I, II, IIIA, IIIB, or IV) did tell you at any point in your diagnosis, either previous to or after treatment was completed.

      2 months ago
    • Paperpusher's Avatar
      Paperpusher

      @ wmsavs-sclc is staged at either limited or extensive. I found out after asking my husband's oncologist what stage he was expecting a number.
      @Stew, I agree with wmsavs...and po18guy. Have you had an MRI on your brain? It was my husband's chemical oncologist who recommended WBR for him as a preventative since he also has sclc. However his radiation oncologist strongly suggested that it not be done. My husbands cancer is at the limited stage and he's had a prior stroke which left cognitive damage in addition to the physical limitations. The radiation oncologist told us that the WBR would give him further cognitive issues as his reasoning for not recommending it. His cancer is also a type that likes to go to the brain. The rad onc said that IF the cancer did show up in his brain then they would do targeted therapy.

      2 months ago
    • gmorcutt's Avatar
      gmorcutt

      Stew, I would definitely seek a second opinion. If I were in your shoes, I would say NO to prophylactic radiation. I’ve never heard of such a thing for lung cancer! (I’m an 8.5 year survivor.) If you’ve never had a brain MRI, you should, and continue to get one every six months. (My experience.) If you ever do end up with brain mets, they can do pinpoint radiation on those spots. I’ve always been told that whole brain radiation is not acceptable as there can be many cognitive side effects. If you have a targeted mutation, often switching medications can shrink brain mets. But again, I have to emphasize that prophylactic brain radiation is not part of any protocol I’ve ever heard of!

      2 months ago
    • Stew's Avatar
      Stew

      Thanks to each of you for your replies. I sincerely appreciate your taking an interest and responding.

      My small cell lung cancer is extensive, stage 4, and so far I have had two MRI’s (the last one in Dec.) of my brain since it is one of the places this cancer migrates to, and both have been clear.

      2 months ago
    • Paperpusher's Avatar
      Paperpusher

      Stew for what it's worth, my husband's sclc is also one that likes to go to the brain. He was diagnosed December 2013 and hasn't had a brain MRI yet. No one has suggested it so this time I'm asking for it since I've seen changes in his cognitive abilities-pushing the wrong button on the remote, hesitancy to drive as far as he used to, more frustration with tech stuff, etc. I'm glad your doctor has been on top of it.

      2 months ago
    • Pmcvdl's Avatar
      Pmcvdl

      I also had SMLC but no brain mets. I also had 2 clean scans after only chemotherapy. I have never had radiation and had one clear brain MRI. My radiation oncologist said that having radiation on the brain after clean scans is indeed done, citing several studies, but he gives patients a choice: the radiation OR a brain MRI every 3 months ... I have chosen the MRI, of course. I am quite surprised by the people who actually CHOOSE the radiation, especially if no mets have been in the brain before.

      27 days ago
    • Stew's Avatar
      Stew

      Your replies are appreciated greatly.
      Like Pmcvdl, I have chosen to have the brain MRI every 3 months rather than have the radiation.

      As you know, this journey is sometimes scary, so communicating with others who are going through the same thing is really helpful.

      Thanks again.

      27 days ago

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