how much time to test a tumor?

my 20yr old son had a tumor removed from his cerebellum exactly 2 weeks ago. they got most of it out without going into sensitive brain tissue. the tumor was sent to another hospital to be tested and as of today the doctors office said the results are not ready.  is this normal?  he is doing ok, up days and down, headaches and no headaches. he had an infection in the incision but with antibiotics it just cleared up.  he needs to go to a day program rehap for 6 weeks to get his gait back, work on the neck area and cognitive abilities.  i know this is a long road but we are on pins and needles about the tissue test.  any insights?    thanks deb

Golden98,

It took about 3 weeks to get final test results on my husband's tumor.  The hold up is usually the FISH test which determines the genetic make-up of the tumor.  Have you spoken to the doctor's office?  Ask them when they anticipate the test results.  Now is the time to be nice but assertive.  Your son is very vulnerable right now post-surgery.  It is time to channel your inner mama bear to get your son the best treatment possible.  I hope the test results come back quickly and bring you good news.

Jackiekay

Wow Jackie you are such a font of useful info. :o) I know you had to come by all of it the hard way, with sorrowful times, but it's so good that you can share it here. Thank you.

Golden, we had to wait a few weeks too but until Jackie's post above, I had no idea that this was typical. Arg it is sooooo hard. Just keep breathing and loving and hoping.

Our NS told us right after the craniotomy that he was only able to remove about a third of Andy's tumor because it was such a tangled up mess, and that he was very sorry but was 99% sure the pathology would confirm his preliminary diagnosis of a GBM... and he was right. But it was even worse because Andy's tumor grew back in the void within a week, and then 2 weeks later the biopsy report said it was a GBM + PNET cells: primitive neuro-ecto dermal tumor. A rare combo, very aggressive. Shoot. The radiation and chemo seem to have stopped it now for at least the time being.

But I know sooo well how shattered lives feel, and how broken hearts feel. I'm really sorry. Hope you're getting hugs whenever you need them.

Sarah

mom of Andy 26, dx GBM/PNET 1/09

thanks for the answers.  the nurse practioner (which was not supposed to tell me anything) said the initial diagnosis was low grade malignancy (what does that mean?). but it had to be sent to the university hospital for a comprehensive diagnosis. hopefully in the next few days we will get the results.  deb.

Wow!  We unfortunately have much in common.  My 20-year old son was diagnosed in January of 2009 with GBM; they were able to do a complete removal of the tumor, and the surgeon already knew just after surgery that the tumor had characteristics of GBM, stage 4, just after it's removal.  We got the final diagnosis just days after the surgery, while we were still in ICU recovering.  I think it's interesting that your situation, weeks later, they still haven't confirmed anything.  This seems unusual to me, but maybe it's an indicator of good things, perhaps ruling out GBM.

Thanks for all the answers. It is now 3 weeks and 1 day waiting for results of the tumor test. I was told on Friday that the final results would be in today but when I called today I was told the final result was not ready and did not know when it would be. I feel they are making us wait until my sons visit with the neurosurgeon next week (7/15). I keep thinking this is a bad sign.  Plus after 3 weeks my son is extremely tired, it is a fight to get him to sit up or even walk around. Is this normal?

Deb