First of all, I am not a doctor, but I have a four month old child with a
germinal cell tumor.
We attended first the Hospital Central de Oviedo, (Spain). Now we are at
Hospital La Fe, in Valencia (Spain). We are seeking for a second opinion at
Boston Children Hospital.
After all this explantion, I point out several questions we have been
thinking and choosing through.
1. Trust your surgeon. Ask him whatever bothers you and don?t let anything
going around your head. Write down your thoughts, so they won?t get away. If
his answers don?t calm you, let him know so. He is a professional and will
understand you.
2. Thanks to the internet, many specialist have contact one to other.
Believe that they are not such dumb to think they have the one and only
truth. If they have doubts they will surely ask for help.
3. If you still don?t feel confortable (I mean with the explanation: Cancer
on the family makes everyone feel unhappy for months) tell your surgeon
about looking for a second opinion. Tell him the truth. Sometime ago, many
Drs wouldn?t agree with a second opinion. I believe that doesn?t happen now.
4. As far as I know, in cancer treatment, the point that makes the
difference is the diagnosis and the surgery. The treatment, chemo,
radiotherapy, are quite the same in one place or another: They share
information. Diagnosis is a complex process, involving personnel
qualifications as well as technical means. Seek for a good place. Surgery is
also where the person, the the doctor, makes the difference. Not only for
his personal background and experience, but also because in some big
hospitals, the doctors can be more skilled on certain tumors.
Take a loon at www.cancer.org You will find many answers there. Good luck.
You, as are the other here are on my prayers.
Regards,

?ngel

Corey,

First question to ask your surgeon is how many similar procedure has he/she
performed in the past and what was the success rate of those procedures.
Larger institutions like Mayo have neuro centers dedicated to the study of
brain tumors so the surgeons there are more apt to have seen and treated
tumors similar (if not identical) to your wife's.  I myself was diagnosed
with a low grade glioma last July and told it was inoperable and very risky
to biopsy due to location.  Fortunately mine has remained stable over the
course of 8 months.  Had surgery been an option I would have gone to a major
clinic even though my local neurosurgeon is touted as one of the best in
central Ohio.  Best of luck with your wife's treatment.  I feel for you.

-Bill

Hello Corey,

I think you've done the right thing to get a 2nd opinion on the pathology.
Perhaps you could also ask him when he calls about where the best neurosurgeons
are (or a selection of places so as to not pin him down to one).

On this web page it says to find the best brain tumor surgeon (and I see in the
archives that's what Steph had advised someone else much earlier).
http://www.braintumorfoundation.org/btsm_evaluatedoctors.asp
(read the whole thing) and it also says
"Who do you go to for an opinion?
In researching your options, you will ultimately discover a wide variation in
the surgical experience - and ability - between neurosurgeons. Consider the
following: about 150,000 brain tumors are diagnosed in the US every year BUT the
number of surgical procedures performed for brain tumors in the US annually is
only about 38,000.
Now consider the number of neurosurgeons - 4,600 (the majority are Board
Certified). Dividing the 38,000 procedures among the 4,600 neurosurgeons leaves
only 8.2 surgical procedures per year per surgeon! Not a great deal of
experience! In fact, most neurosurgeons perform far more surgery for spinal
conditions and trauma than they do for brain tumors.
However, there are centers where a neurosurgeon treats 100-200 brain tumors per
year. These surgeons are operating on many more brain tumors, while the majority
are seeing less than 8 cases per year. Of course, you want the surgeon with the
most experience and the best results.
But how do you find them?
The Brain Tumor Foundation has extensively researched and continuously updates a
list of the most experienced brain tumor surgeons in the country. Categorized by
major metropolitan area, the list is available on this web site. "

but I cannot find it !  Have a look through the web page, perhaps it's me.
There's also under "about us" a "send me info" form in case you cannot find it
either.

Other than that, I would use a Google search with the phrase "brain tumor" and
neurosurgery, ignore the ones that are not in your country and pick the websites
for wellknown centres, read up on them, then find out if they are "board
certified", call to "phone interview" them. If that's not possible, then you'll,
I guess have to make appointments and go with your wife and all you have and
interview them in person. (unless the persons who answer the phones are able to
point you (or fax you) to the neurosurgeons experiences and certification.

My Google search result http://tinyurl.com/2p7hm I believe I saw Cleveland
Clinic - if that's Mayo ??

or "Brain tumor" with neurosurgeon or neurosurgery http://tinyurl.com/357ag  (I
suspect this might yield similar as to the other Google search.

Once you've selected 2 or 3, ask them each what they want, sending pathology and
scans or going with your wife and bringing same along.  I would think that they
would want to see your wife and evaluate her for neurological defects while
looking at the work that's already been done, before specifics can be discussed
or whether they would want to run more tests themselves.

I'm sorry, I don't know how to help better.
J

Whoops ! I forgot this, in case they can be a resource
http://nyneurosurgery.org/brain_tum_type.htm
J

My husband, healthy active 34 yrs old, also had a seizure for no apparent
reason, in Jan. 2004.  CT and MRI showed a tumor in right frontal lobe.  He
was referred to Univ. Calif. at San Francisco.  His neurosurgeon said he did
2-5 brain tumor resections each week.  He had the surgery Mar. 1 2004 with
excellent results.  He did not have a biopsy pre-surgery, his surgeon
advised to do the surgery ASAP and biopsy what was resected.  The pathology
report indicated anaplastic astrocytoma, Gr III.  His tumor was far enough
away from the motor area but the surgeon resected as much brain as he could
up to the motor area.  He is now on radiation and temodar (chemo), 3 weeks
into treatment with no nausea, just a little tired.  He is bald on the right
side of his head from radiation.

From our experience go to a nationally known brain tumor center.  UCSF is
one but far from your home.  Everything and everyone at UCSF was excellent.
You need that, I think, a highly specialized brain tumor center.  We went to
a hospital closer to home prior to UCSF whose neuro dept. was everything
neuro (back and neck surgeries, etc.).  It was so much better where
everything was centered around just brain tumor patients, we were so glad we
went to UCSF.  We both wanted him to have a surgeon who does lots of brain
surgeries.

If you feel uncomfortable telling your current surgeon that you are seeking
a second opinion you could ask your family doctor for a referral to Mayo
Clinic.  Our doctor called UCSF and said he wanted an appt. ASAP.  We got in
in about a week, all we brought was a copy of his MRI and the referral from
our doctor.  At the first appt. they scheduled the surgery 3 weeks out.
They had a patient coordinator who took care of all our insurance
authorizations and pre-op scheduling.

The good news is he is doing very well post surgery and with treatment.
People cannot believe he is working and exercising and feeling pretty good.
Temodar has not caused nausea.  We are optimistic about his prognosis.  I
wish you all the best.  Take care, JL.  (real email, jngregg at
innercite.com)