Post operative Melanoma Treatment

robertsi · New User Joined: 23 Jul 2009 Posts: 2

Hi,

Just went for a post operative oncological visit for my father. He had a malignant brain tumor removed about 3 weeks ago. He had previously been treated for a melanoma on his skin and had that removed as well.

I was concerned about the treatment plan that was offered. They first said that they recommended whole brain radiation, which may or may not be correct. i wanted an opinion on that. But my main question is concerning the follow up care. We were told that no testing would be guranteed to detect any new cancers. While i understand that may be true. I am wondering if a more aggressive plan would call for periodic ct scans or pet scans. Perhaps every 3 to 6 months or so for a period of time.

I guess i would love to hear from someone else about follow up care that they have been given in determining whether a recurrance will happen or not.

The answer the doctor gave us was that the best thing to do was to wait for new symptoms to occur. The brain tumor that was removed didnt cause symptoms until it was about 3 centimeters and caused a seizure. I dont understand why you would wait to see if something like that happens again.

Thanks in advance for any assistance you can provide me in understanding this matter. I just want to make sure im not getting an insurance company runaround.

Rob

HaoleBoy · Senior User Joined: 19 Aug 2008 Posts: 108

Rob, I don't know if the Doc's concern is about the additional radiation exposure associated with PETs and CT scans adding to the radiation level that your Dad absorbed, or will, during Whole Brain Radiation.... But I definitely hear you about the insurance run-around thing ... Jeez, at times one does have to wonder if the Docs are working for the patient or the insurance companies....

At Stage IIA (localized disease) -- at least right now, I don't have any personal experience to share with you in regard to metatastic melanoma, much less brain mets, but I can point you to some other sources where the moderators and the forum participants have, unfortunately, quite a bit of experience in dealing with brain mets and related WBR treatment, systemic treatment, and follow-up ....

You may want to visit and start a dialogue with folks on the below melanoma sites.....

I recommend that you visit the Melanoma Patient Information Page at the link below.... There are alot of patients there battling metatastic melanoma to include brain mets (note the board traffic and responses do slow down over the weekend so give it some time until Monday) ..... This board and its members have a wealth of personal experience and they freely share it.... ...

http://www.mpip.org/bb/bbindex.html

I also recommend Catherine Poole's Melanoma International Foundation... Catherine is a professional melanoma patient advocate and very responsive; she is up on the latest treatments, is well connected to the US melanoma treatment centers of excellence and her forum is professionally moderated by melanoma surgical oncologists and oncologists....You will have to register at her site; not so at MPIP (not yet, though they will likely change this soon_

http://forum.melanomaintl.org/toastforums/toast.asp?
sub=show&action=topics&fid=4

Prayers and Blessings,

Haole Boy
Stage IIA

robertsi · New User Joined: 23 Jul 2009 Posts: 2

Haole Boy

Thanks so much for your response. i will check out the sites that you recommended. Best wishes to you. I think ill be a regular visitor here. So keep in touch with any news about yourself.

Thanks
Rob

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