Update: Help?? 23yo son dx'd with brain tumor referred to Mayo

  1. Update: Help?? 23yo son dx'd with brain tumor referred to Mayo

    My son has spent the week at Mayo - and is now on his way back home to Grand Forks for a few days.

    He saw Drs who ruled out MS - He saw Drs who confirmed the tumor is pressing on cranial nerves and is affecting both eyes -

    He was told three options right now before proceeding with more tests:

    Do nothing - wait and see -
    Radiation without a biopsy
    Biopsy, followed with radiation and possible chemo -

    Saw two neuro radiologists today - said they might proceed without a biopsy but would rather he confer with a neuro-radiological-oncologist to hear pros/cons of a biopsy - risks involved - risk/benefit etc. That is scheduled for next Wednesday.

    The tumor is very large - in a very hard to reach place for biopsy.

    Anyone have info on radiation on this area of the brain? Side effects - etc?

    Tx will last 5-6 weeks. After next Wednesday's appt - he'll know more - and radiation could start the week after next.

    Anyone with info on biopsy in this area? I assume it's in pt procedure - how long as in pt?

    Also family in Houston is talking about the Proton Therapy at MD Anderson and I understand there are two other places in the US that does this. Mayo does not. Anyone with experience with this? I'll post this question separately -

    Been a long week -

    Thanks again for any info and continued kind words and prayers.

    Looks like I'll be coming to Mayo for a while in the near future -
    __________________
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  2. 21 Comments

  3. by   Spidey's mom
    I don't have any information for you but I feel led to post and let you know that I'm thinking about you and your son and praying for you and for the right decisions.

    I have two adult sons, almost 22 and 24. Just talked to the oldest on the phone.

    My 17 year old daughter and 5 year old son are still home - gonna go tell them all I love them.

    :icon_hug:


    steph
  4. by   RNsane
    I am sorry for what you and your son are going through, but we cannot provide medical advice on this site as it is against TOS. This site is not meant for people to "consult with specialists" it is for nurses and other medical personell to relax and speak to others about work and life in general, not to give medical advice.
  5. by   NRSKarenRN
    brain tumors

    radiation therapy for brain tumors

    radiation therapy / brain tumors and metastatic brain tumors.

    brain tumors: brain tumor treatment, symptoms & malignant brain tumor support.


    brain tumor radiation
    advanced proton therapy center for
    cancer treatment at m. d. anderson.
    www.mdanderson.org

    proton beam radiosurgery at mgh/harvard

    jill's house: proton therapy

    proton therapy - wikipedia, the free encyclopedia


    from my readings (and staff member who's son has brain tumor), difficult locations of tumors especially located near vital organs/major veins and arterys are best treated with proton therapy. hope this info is helpful in guiding your sons care.

    {{{{{ hugs}}}}} from across the miles.
  6. by   Ashera
    Quote from RNsane
    I am sorry for what you and your son are going through, but we cannot provide medical advice on this site as it is against TOS. This site is not meant for people to "consult with specialists" it is for nurses and other medical personell to relax and speak to others about work and life in general, not to give medical advice.
    I do appreciate your letter, although it did feel like I was being scolded. Speak to others about life in general? This...happens to be my life in general right now. And this board is also a place to get support and share like experiences and to gain information in areas we might not know ourselves.
    I truly did not feel I was asking for medical advice - I had posted a week ago and got some wonderful feedback from friends here. I've only intended to perhaps get - exactly what I've gotten so far - as in the letter above - experiences or ways I might help my son - and also myself. We are all nurses having seen lots of different things. I have no experience with radiation or biopsies - and letters from those before told me lots of things - even as simple as "most radiation procedures are handled on a 6 week out pt basis" - and that gave me something to think about insofar as arrangements to make when we were told just that. That was not asking for medical advice.

    My question about proton therapy - was not soliciting advice - it is a new radiation therapy and I'd hoped someone might have had some experience with pts going through that.

    The poster above just sent me a wealth of info with sites to go to that I might not have run across on my own.

    Again - apologies for sounding like I was asking for medical advice or requesting to "consult with specialists".
  7. by   Ashera
    Quote from nrskarenrn
    brain tumors

    radiation therapy for brain tumors

    radiation therapy / brain tumors and metastatic brain tumors.

    brain tumors: brain tumor treatment, symptoms & malignant brain tumor support.


    brain tumor radiation
    advanced proton therapy center for
    cancer treatment at m. d. anderson.
    www.mdanderson.org

    proton beam radiosurgery at mgh/harvard

    jill's house: proton therapy

    proton therapy - wikipedia, the free encyclopedia


    from my readings (and staff member who's son has brain tumor), difficult locations of tumors especially located near vital organs/major veins and arterys are best treated with proton therapy. hope this info is helpful in guiding your sons care.

    {{{{{ hugs}}}}} from across the miles.
    oh thank you!!!!

    this is wonderful information and several of these places i'd not seen yet!
    a good way to spend my saturday afternoon!
    bless you!
  8. by   CHATSDALE
    my son had an initial dx of brain tumor and i know what you are going through...my prayers are with you
  9. by   suzy253
    I hope you find the information you're looking for. Looks like some great links. I wish I could help you out; but please feel free to come to the board to vent and share with us.
    Continued prayers to you and your family. (Huggs)
  10. by   66busdriver
    So very sorry to hear about your son. I am a huge Lance Armstrong fan so I know that these things can be overcome. I wish you the best of luck.

    As for RNsane- You should be ashamed of yourself. I did not read at all that she was asking for advice, only information. I thought about your post all night and felt that I should say something.

    Craig
  11. by   66busdriver
    i forgot to post this, here is a blog site of a friend of mine who is going through the same thing.

    http://teamtumorerradication.blogspot.com/

    peace
    craig
  12. by   Ashera
    Quote from 66busdriver
    i forgot to post this, here is a blog site of a friend of mine who is going through the same thing.

    http://teamtumorerradication.blogspot.com/

    peace
    craig
    thank you so much craig - i appreciate this link - it has so much info in it - it is filed away...hopefuly not to be needed - but i have a gut feeling i'll be referring to it again.
    many warm wishes for your friend...
  13. by   suzy253
    Quote from 66busdriver
    As for RNsane- You should be ashamed of yourself. I did not read at all that she was asking for advice, only information. I thought about your post all night and felt that I should say something.

    Craig
    :yeahthat: I agree 100%. It so bothered me reading her post.
  14. by   caroladybelle
    Quote from Ashera
    I do appreciate your letter, although it did feel like I was being scolded. Speak to others about life in general? This...happens to be my life in general right now. And this board is also a place to get support and share like experiences and to gain information in areas we might not know ourselves.

    My question about proton therapy - was not soliciting advice - it is a new radiation therapy and I'd hoped someone might have had some experience with pts going through that.

    The poster above just sent me a wealth of info with sites to go to that I might not have run across on my own.

    Again - apologies for sounding like I was asking for medical advice or requesting to "consult with specialists".
    Please do not feel "scolded".....some of us who work with cancer patients are sometimes reluctant to advise on new therapies for many reasons.

    First, we are not party to the staging/histiology of the cancer, or whether it is a primary/secondary/met, the patient's history and medical condition. Second, virtually every MD and many facilities do the same procedure very differently. Variations may have to do with minute tumor shape difference, signs of necrosis/non necrosis. All of these are things that we on the BB, not involved with the care of this patient do not know, and do make a substantial difference in treatment. And the side effects will vary accordingly.

    As such, we are often reluctant to comment. Something that may be OP in some places may not in others, and often microscopic variations in positioning may be the difference.

    Another point is that biopsy of brain lesions of any type are generally handled through neurology/neurosurgery and not through oncology. I recently worked on one of the few high level oncology ICU (cardioversions, vents, multiple drips, CVVHD, granulocyte transfusions). Oncology will frequently take s/p cardiac onco-related surgeries. But one of the only cases that we did not take back immediately postop was ...a brain biopsy. The MDs were reluctant to even order DC on the staples - 3 weeks post - it falls out of their realm.

    I have been a fulltime onco nurse for over 10 years and over a dozen facilities - several in the top 10 in the nation. I maybe see an adult patient with primary (not mets) brain tumor every 18 -24 monthes or so, few and far between. A friend that works neuro sees them much more often. Thus neurosurgery/neurology would probably be a good source for info on biopsy/side effects. Onco is better equipped for the physical (nonneuro) effects of routine rad and of chemo.

    A possible source of clearer info would be for you (or your local social worker for the case - all onco patients should have one) to speak to social work at the site/neuro onco for the procedure. They can tell you about postop followup routine, OP care, what the routine is. They also may be the ones (SW at the site) to make various arrangements for housing, FU, and often like a heads up on financial/aftercare issues. Or contact the office/department that will handle the procedure and have them send you the info sheets/books - nurse educators for the dept should have some. My experience at the higher ranked teaching facilities, is that they usually have lots of info sheets/books on procedures. Even with experimental/research issues - there are extensive consent forms that detail any "known" problems or experienced problems.

    My heart goes out to you and I will keep you in my thoughts.

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