August 19, 2001
Presented with focal seizures in right wrist and right foot, and was
subsequently diagnosed with a brain tumor.
August 22, 2001
CT scan of my chest, abdomen, and pelvis confirms a primary brain tumor.
August 23, 2001
Underwent a 3 hour and 15 minute Vector Vision guided craniotomy. Amount
of resection was subsequently deemed around 70%. Discharged three days later.
September 5, 2001
Dr. Peter Berger at Johns Hopkins Hospital declares the tumor is a WHO
grade II astrocytoma.
September 11, 2001
Local radiation oncologist explains the current protocol for someone in my
situation is to take a wait-n-watch approach rather than starting radiation
treatments right away.
September 13, 2001
Had my first post-op MRI scan and the results were considered
inconclusive. All local doctors agree more healing time from surgery is needed
and it’s safe to wait another four weeks to get my next MRI.
October 2, 2001
Memorial Sloan-Kettering suggests I be safely observed with MRI scans
every 3 months.
October 11, 2001
Had my second post-op MRI scan and the results showed continued healing of
the surgical site and no new growth from the residual tumor.
October 15, 2001
During a visit to their facility, Johns Hopkins Hospital also recommends
the wait-n-watch protocol.
December 18, 2001
The Brain Tumor Center at Duke also recommends the wait-n-watch protocol.
February 4, 2002
Had my third post-op MRI scan. It has now been almost six months since
diagnosis / surgery and the results again showed continued healing of the
surgical site and no new growth.
February 8, 2002
Visited with Dr. Henry Friedman at Duke where he continues to recommend
wait-n-watch.
February 26, 2002
Attended a monthly tumor pathology conference to hear my case discussed
among local doctors of various disciplines. The conclusion of all the doctors
was to continue the wait-n-watch protocol.
May 20, 2002
Had my fourth post-op MRI scan and the results showed some minor healing
of the surgical site since the last MRI and no new growth. It has now been
nine months since diagnosis / surgery.
August 5, 2002
Had my one-year post diagnosis / surgery MRI-scan. The results again
showed no new growth.
November 14, 2002
Had my first neuropsychological exam and the results showed deficiencies
in various areas, among them basic math skills, ability to focus, and word
finding aptitude.
December 3, 2002
Had my 16 month post diagnosis / surgery MRI-scan. The results showed no
visible signs of new tumor growth. However, my local doctors in Annapolis said
the scans did indicate evidence of some swelling in the tumor bed. My
neurosurgeon told me swelling is caused by irritation to the brain and he
feels it must be due to microscopic tumor cells. He recommended I consider
shaped beam radiosurgery using the new Novalis device at the Anne Arundel
Medical Center. He told me this didn’t require immediate
attention and he would be presenting my case to the tumor review board next
month.
I usually plan my MRIs around trips to The Brain Tumor Center at Duke and on
December 5, 2002, Dr. Henry Friedman examined my scans. He didn’t see any
evidence of swelling and saw no difference between this MRI and the previous
one. We decided just to be safe I would get another MRI in two months and also get
my first PET scan in the same time frame.
February 12 & 24, 2003
Had
my 18 month post diagnosis / surgery MRI-scan on Feb 12 and my first PET scan
on Feb 24. These two scans were used to “follow-up” my December MRI scans
to determine if the swelling noted by my local doctors in Annapolis was still
there or had possibly gotten worse. My case was presented to the tumor review
board and there was unanimous agreement neither set of scans showed any
evidence of swelling. The review board’s recommendation was there was no
need to do any form of radiation at this time.
April 14, 2003
Had another appointment at The Brain Tumor Center at Duke where they
compared the February MRI scan against the December scan and reported the
tumor has remained stable. They also compared my latest MRI scan to the scan
taken a year ago—in February 2001—and they reported the tumor has remained
stable for over a year. They requested I keep my MRI scans at the four-month
interval for the next two scans and if everything remains stable, I can
increase the interval to six months. I’ll be sending the films from the June
scan down to Duke for a review and then I’ll go for another visit in October
to coincide with the last of the four-month interval scans.
June 10, 2003
I
had another MRI-scan. The results showed the tumor has remained stable. As
requested, I will be sending this set of scans and the set from February down
to Duke for evaluation.
July
11, 2003
After sending the latest set of films from my June MRI, along with the
films from the February and December MRI, the doctors at Duke determined the
tumor has remained stable.
September 16, 2003
I had another MRI-scan. The results showed the tumor has remained stable.
The reason the MRI was a few weeks earlier than planned was that I’d had a
few seizures where I was unable to speak during the seizure. For this reason,
I decided to have the MRI sooner rather than later to have a look at what was
going on.
October 1, 2003
I had another appointment at The Brain Tumor Center at Duke where they agreed
that the tumor has remained stable. However, rather than suggesting an
increase to six months between my MRI scans as expected, Dr. Friedman
suggested I remain at four months for another two years. Note that during the
three or four visits before this one, I’d seen Dr. Reardon.
January 19, 2004
I had another MRI scan. The results showed the tumor has remained stable. Dr. Ducker
presented my case before the Novalis (radiation) conference to get a consensus from
the other doctors and they were all in agreement there was no new growth.
February 10, 2004
I had an appointment at The Brain Tumor Center at Duke where they said the tumor
was “rock-solid stable”. They also told me—in contrast to Dr. Friedman’s comments
during my last visit—that I could now graduate from getting scans every four months
to getting scans every six months. I’m planning to return in August after my next
MRI.
May 6, 2004
I had another MRI scan. This was an unscheduled, earlier-than-six-month scan
because of some atypical seizure activity. The results showed the tumor has remained
stable and Dr. Ducker again presented my case before the Novalis conference, which
agreed there was no new growth and I should not pursue any additional treatment at this
time.
Week of June 7, 2004
The results of my latest MRI review by Duke were received over a phone call. Last week,
I'd sent Duke the following sets of MRI scans (along with a detailed letter): December 3,
2002; September 16, 2004; January 19, 2004; and the latest scan, May 6, 2004. A nurse called
me and said Duke still considerd my tumor to be stable, though the doctor that performed the
review did note differences in the T2 and Flair images. I asked her if the doctor could call
me back, which he did the next day. Here's a summation of what he said and his answers to my
questions: The differences did show contrast enhancement. The images show an increase in swelling.
There was an increase in swelling of 15% between 12/02 scan and the 09/03 scan. The difference
in swelling between the 12/02 scan and the 01/04 scan was 25%. There was no change in swelling
between the 05/04scan and the 01/04 scan. In talking to the doctor, it is my understanding there
is no clear evidence of any tumor growth, which is why Duke (and my local doctors) considers my
tumor to be stable. Also, the doctor saw nothing to suggest the tumor is mutating to a higher
grade. He said these minor changes did not warrant any type of treatment at this time just
keeping a closer watch, which is why he suggested going back to MRIs every three months. If the
swelling were to continue or if my seizures were to worsen, Duke might suggest I consider some
type of treatmen such as Temodar (a chemotherapy drug).
Week of June 14, 2004
After reporting Duke's findings back to my local doctors, they went and double-checked
my last MRI to see if they missed anything. During their last review, they had compared the
May 6, 2004 scan to the August 5, 2002 scan and the February 12, 2003 scan and found my
tumor stable. This time, Dr. Eckel—the neuro-radiologist—personally compared my May 6, 2004
scan to my May 20, 2002 and didn't find any noteworthy differences (i.e. he could not confirm
the findings of Duke).
July 26, 2004
I celebrated my birthday by getting another MRI and met with Dr. Burke three days later
to discuss the results. Dr. Burke said as far as he could tell the tumor has remained stable
but he'd like to start gathering additional information with each MRI from this point forward.
He wrote me a script for another couple of “special” MRI scans.
August 4, 2004
I had another appointment at Duke where I was scheduled to meet with Dr. Friedman but ended
up meeting with Dr. Jennifer Quinn instead, who happens to be their resident expert on low-grade
gliomas. She reviewed my films and told me my tumor is still stable. She also said the discussion
I had with their doctor back in May—regarding the increased swelling—was most likely a result of
“poor positioning” within the MRI tube, which is an unavoidable occurrence, between scans. While
she didn't come right out and say the doctor made a mistake, that was my interpretation of her
comments. However, she did want me to continue getting MRIs every three months and making visits
to Duke every six months.
August 9, 2004
I had the MRI scans Dr. Burke wanted, which were mentioned in the July 26, 2004 blurb above.
They included a functional MRI and coronal scans of the brain. A review conference was held three
days later where it was determined these latest films, while they didn't show anything alarming,
they also didn't really show anything useful since they tend to be more useful over time with each
subsequent scan adding more information to the overall picture.