Home Forums Melanoma Diagnosis: Stage IV Best Hospitals? All hype?

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  • #21497
    Catherine Poole
    Keymaster
    #62059
    PentiumIV
    Participant

    Hi, Catherine!

    I place a lot of value in doing melanoma management, and especially scans (CT, MRI, PET), doing surgeries in one place. And when this place is NCI Comprehensive Cancer Center, or worldwide equivalent – that’s the way to go. Our only chance to go forward is to have an integrated approach to melanoma management. For example, an experienced neurosurgeon that does radiotherapy and researches blood-brain-barrier is an invaluable resource for treating brain mets in a melanoma team.

    Best , Gregory.

    #62060
    odonoghue80
    Participant

    I actually have this question right now (urgently) and curious how people go forward with it. For example my care at University of Chicago with Dr. Gajewski has been great and my last 8 months on Zelboraf has been treating me well. CT’s continuing to show melanoma is managed in the body. However I had a brain MRI today that showed my brain met (left temporal) grew. And it seems like after talking with the neuro doc today they are basically penciled in the need for surgery. I’m meeting with neuro team Wednesday.

    My question is how do I determine and with swiftly enough sound information, where is worth researching and asking for another opinion? Where is best doc for melanoma brain mets. Brain surgery? Can I do brain surgery at say MD Anderson or Sloan Kettering for example and then come back to Chicago for my onc care?

    I had SRS in December 2012 and until a seizure in June and now fumbled speech it’s concerning.

    Thoughts or advise? Is brain mets not worth waiting on moving for second consultations?

    Thanks,

    Shane

    #62061
    Catherine Poole
    Keymaster

    Are they going to do SRS or surgery? I think that the university is an excellent place but you can do some research on the background of the neuro team. See where they trained. You can certainly go to another center for this treatment and come back for further follow up. Remember you are hiring them and it remains your choice for treatment locale.

    #62062
    PatW
    Participant

    You certainly do have the right to go someplace else for brain surgery and then go back to UC for oncology. But I have to wonder why you would do that.

    I like an “interdisciplinary team” approach to melanoma treatment. Doctors, nurses, lab techs, pharmacists, etc who work together all the time seems like a good idea to me. They can meet for weekly case reviews, share data and communicate quickly and easily with each other, and so on. If you have some reason to distrust the neurosurgeon or radiation oncologist at UC, then by all means go someplace else. But if you picked UC because you thought it was a top-notch melanoma specialty center and you are happy with your treatment so far, I would extend that trust to the other members of the team. I think that you, as the patient, will benefit.

    When you say “surgery” do you mean neurosurgery (i.e. a scalpel) or stereotactic radiosurgery (i.e., Gamma Knife or Cyber Knife)? Although most people shudder at the thought of someone cutting into their brain, I have heard the the surgery itself and the recovery is not all that bad. And it would be very reassuring to know that the tumor is GONE. If the lesion is inoperable or if there are too many mets, then SRS would be the next best choice.

    From what I have read, it is not unusual to develop one or two brain mets while the rest of the body is still responding to Zelboraf. Most doctors seem to recommend treating the brain mets with neurosurgery or SRS if possible and continuing the Zelboraf rather than stopping the Z. I have also read that previously irradiated dead or dying brain tumors can cause neurological symptoms, including seizures. That is another reason why some neurosurgeons want to use the scalpel approach– they can get the dead/dying mass out of there.

    Just some things for you to think about.

    #62063
    odonoghue80
    Participant

    I met with Dr. Gabikian at Univ of Chicago yesterday and because of the location and size of my location in the left temporable this is going to be a serious surgery. It’s going to challenging and lots of risks, and the real possibility of me being worse after the surgery is possible. This is directly affecting language and cognitive communication. I am currently having speech issues but they warn I will probably be worse. I will be getting an “awake” surgery.

    Dr. Gabikian studied at Johns Hopkins and at Univ of Washington. I feel confident with him but he is leaving Univ of Chicago next month. He recommended for expertise in this difficult area of brain to Dr. Sawaya at MD Anderson (who I overnight records yesterday and consulted MDA thankfully this year back in March so that ball is rolling). And also Dr. Silbergeld Univ of Washington.

    Because I am going to require rehabilitation most likely I’m encouraged again about MDA again.

    However, this tumor has doubled in size last 3 weeks so I am ready to go and don’t wait much longer.

    Thanks,

    Shane

    Also, any experience with surgery in left temporable brain mets?

    #62064
    Catherine Poole
    Keymaster

    You also might consider Veronica Chiang http://medicine.yale.edu/neurosurgery/people/veronica_chiang.profile

    who is a neuro surgeon at Yale. She is quite good and great human being too. She did our webinar. I hope all goes well! (PS Duke is where Kennedy had his brain surgery)

    #62065
    odonoghue80
    Participant

    To reiterate this will be a full invasive surgery. There will then be sequential local SRS after the first surgery (hoping that the initial invasive surgery goes well). So yes, I will be digging open up! And as I mentioned partial of this will be awake while they operate because the location is so risky and dangerous to my language and cognitive understanding, and coordination.

    Thanks,

    Shane

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