Question about PCI (Prophylactic Cranial Irradiation) for small cell carcinoma

Jules68
Jules68 Member Posts: 5
in Bladder Cancer #1
Hello everyone. I’m new to this site and need some guidance if you can help. My mother is 65 and was diagnosed with small cell bladder cancer. From what I understand small cell is usually found in the lungs and is rare in the bladder. She’s been through chemo since August and began radiation partway through her chemo so they used the combination of the two for treatment.

She’s nearly finished with her bladder radiation treatments and now the radiation oncologist is recommending preventative brain radiation like they do for lung cancer patients. The scans never proved the cancer left the bladder but the doctor is talking about “one or two cells” that might have escaped and might later cause a brain tumor. Has anyone here had the brain radiation because my mother is really apprehensive about it.

First she’s scared of memory loss. Then she’s afraid the radiation will change her personality or have significant balance issues. I’m trying to gather as many experiences as possible so she can make a better decision when the time comes.

We really need input from people who have either had PCI or know someone who did. We appreciate your help so very much!

Comments

  • wilsel
    wilsel Member Posts: 38
    #2
    need to try another site...
    Hi Jules68

    You will notice there is not a lot a action on the bladder site so I would recommend trying another site I will give you the address for. I believe you will find a lot more interaction for srue:

    http://www.inspire.com/conditions/bladder-cancer/

    Wish you well,
    Bill

    urostomy 06-30-2012, stage 3a bladder cancer, very aggressive tumor
  • wilsel
    wilsel Member Posts: 38
    #3
    need to try another site...
    Hi Jules68

    You will notice there is not a lot a action on the bladder site so I would recommend trying another site I will give you the address for. I believe you will find a lot more interaction for srue:

    http://www.inspire.com/conditions/bladder-cancer/

    Wish you well,
    Bill

    urostomy 06-30-2012, stage 3a bladder cancer, very aggressive tumor
  • Jules68
    Jules68 Member Posts: 5
    #4
    wilsel said:

    need to try another site...
    Hi Jules68

    You will notice there is not a lot a action on the bladder site so I would recommend trying another site I will give you the address for. I believe you will find a lot more interaction for srue:

    http://www.inspire.com/conditions/bladder-cancer/

    Wish you well,
    Bill

    urostomy 06-30-2012, stage 3a bladder cancer, very aggressive tumor

    Thank you - will try the site you mentioned
    Thanks Bill, I appreciate your help. It's getting close to the decision making time and my mom sure needs as much input as possible. I will move over to the other site and give that one a try! Thanks again and I hope and pray you do well too!
  • MarieF
    MarieF Member Posts: 2
    edited August 2020 #5
    Brain radiation

    Hi!  I'm new to this site and am looking for anyone who has had or knows someone who had brain radiation as part of their treatment for small cell cancer.  My husband has been diagnosed with small cell of the bladder which is very rare.  Brain radiation is being recommended since his chemo cycles are finished.  He doesn't want to do it for many reasons so I am looking for answers to help him think about doing it.  Thanks!  Marie

  • MarieF
    MarieF Member Posts: 2
    edited August 2020 #6
    Brain radiation

    Hi!  Did you ever get any responses about doing PCI?  My husband is faced with the same decision and I am curious to hear from those who have undergone this treatment or their spouse/caregiver who can share.  Thanks!  Marie

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