when to start radiation treatments

On July 17, 2009, I had a Right Temporal Craniotomy.  Tumor removed was diagnosed as Grade II glioma.  I am now strong/healthy enough to start radiation treatments.  However I keep getting conflicting, confusing information on whether it is best to start treatments right away or to just monitor the conditon with further MRIs in the future and not treat until evidence of disease recurrence.  I am 49 yr old male.  I do not know what the size of my tumor was.  Does anyone out there have any information/experience with this?

Hey Jerry.  Too bad you have to be asking these questions, isn't it. It's hard enough to get cancer of the brain but even worse that medical folks don't even agree on or know the best treatments. It's a wilderness for each of us.... no maps, no pathways. Just all the others on the journey who can help out. And I guess there's hope on the research front but frankly, not nearly enough for most of us and our families.

Have you been getting your MRI's? And so far stable? Grade II means not malignant? I would want to talk with other doctors at the nearest major NCCN hospitals (see Newsweek article link in thread below) to get other opinions. Is that possible for you? Duke, UCSF, Dana Farber, etc. The side effects of radiation, short medium and long term, are serious. See http://www.abta.org/index.cfm?contentid=105 to get info on that. One of the long term side effects is tumors! If it buys some quality time it's worth it I guess but it's a hell of a choice.

Really hope you get some advice you feel you can hang on to. Someone who will tell you what she or he would do in the same situation.

Best wishes always,

Sarah

mother of Andy 27 dx gbm/pnet 1/09

Kathy,

Thanks for your response.  I am kind of surprised that you were diagnosed as Grade II and they gave you chemo.  I had been told that because I was grade II that I would only need radiation, no chemo.

I met with two different Dr.s yesterday (friday).  One is actually a hemotologist, I see him because I have also been diagnosed with a non threatening form of leukemia.  He says there is no reason to start radiation right now, not until I show signs of recurrence.  But the radiation oncologist, whom I feel is pushing me to do it now but says it's totally my decision.   And oh yea, I think that his ( the radiation oncologist) bedside manner is horrible.  He reminds me of a fast talking car salesman.

Then yesterday afternoon I exchanged some emails with the main oncologist at University Hospital in Cleveland, OH.  That is where my surgery was done.  He emailed me back with a nice response with some real guidelines that they use, but the way it was written it seemed to me that some of the guidelines contradicted itself.  On top of that, part of the equation was how large the removed tumor was and how much tumor remained after surgery.  I the present time, I don't know what those numbers are but I am going to find out.

I had actually scheduled to start radiation next week, but think right now I am going to cancel and delay until I can get some more information that I am more comfortable with.  If I need to I will schedule and appointment with the oncologist at University Hosp. and make the drive to Cleveland.  Still wonder though if I will get concrete answers from him either.  Also considering just seeing my own family Dr.  I don't expect him to be able to give me definate info either but I hope that he can track down someone who will.  I have to say that I think that the people at University have been been very good to me.  My drive to get there is about 1hr15min.

Well that's kind of my plan right now, it does change rather frequently.  After my original surgery on July 17, about 3 weeks later I developed an infection which almost killed me.  I had a fever of 103.7.  They eventually diagnosed it as Meningitas.  Then had a second surgery because they wanted to check for infection inside my skull.  Was pretty tough stuff, the recovery was a lot harder than the first one.

Wow, I think I'm writing quite a letter here. (lol)  Just to throw this in to had to my hard luck story.  I am currently separated from my wife with a pending divorce.  What a peach she is huh?  She moved out, I live here with our 22 year old son.

I live in NE Ohio, near the city of Youngstown, where are you?  My surgery was done at University Hospital in Cleveland main campus.  But my treatments are going to be at a local branch of University Hospital which operates in conjuntion with a local hospital here.  It is only about a 10 min drive.

Thanks again so much for your response Kathy, look forward to hearing more from you.

sincerely,

Jerry

I am sorry you are getting conflicting reports.  Also I am amazed at the number of people that post that say they don't have their MRI reports.  Please remember you have a right for a copy of all tests.  Get them, along with lab results and make a file to keep with you, you may want a second opinion and you will already have all your records. You can also compare measurements from previous MRIs or Cat scans. You can get the records from your surgeon or from the hospital.

thanks Wendy, I have to say I had thought that I probably should have the reports and I don't.  Up until now I had just been going on trust in the doctors.  But now it seems the doctors that I had trust in don't agree with each other.  Thanks again Wendy