You can also email Chris at [email protected].
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Week ending Friday, March 03, 2000
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A numbness of the right leg for the second time in several months prompted Chris to take visit to Central Suffolk Hospital. Preliminary tests revealed a mass in the left side of the head, near the surface. The size of the mass is slightly less than a golf ball. Chris was then transferred and admitted to Stony Brook University Hospital.
A biopsy was taken at the end of the week. The biopsy procedure that Chris underwent is called Stereotactic Neurosurgery. More information on Neurosurgery procedures can be found at the Columbia-Presbyterian Neurosurgery Department of the Neurological Institute.
After a day and night of rest and recovery from the biopsy, Chris was discharged from the hospital and returned home. He is required to rest and remain home. The biopsy is to be processed and results are to be discussed with the doctor on Wednesday, March 8, 2000.
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Wednesday, March 08, 2000
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Chris met with Neurosurgeon Dr. Rosiello to learn about biopsy report.
According to the doctors' biopsy evaluation that was discussed with Chris and family, the following was learned.
The biopsy revealed a tumor.
The tumor is localized. It does not appear to be a type that spreads.
The tumor is growing at a medium rate relative to other tumors.
According to what Chris learned from the doctor, tumors are rated on a scale of stage 1 to 4. A rating of 1 is the most benign and most people do not score this rating. Chris scored a 2. Only about 5% of the cells, which compose the mass, demonstrate cancerous degeneration.
The tumor is too close to the right side motor and sensory area of the brain to perform an immediate operation to remove it.
An alternative solution is chemotherapy. Chemotherapy will attempt to shrink the mass and stabilize the degeneration of the tumor. After the mass has been reduced in size, removal may be considered and evaluated. If the mass is not removed, Chris has learned that the mass may remain dormant for 5 to 10 years before growing again.
Agenda- Chris is due to see a Neurologist to determine the correct anti-seizure medication dosage. Dr. Goldman, with the advice of a Neuroligist via the telephone, prescribed medication for Chris until he can meet with a Neurologist. Chris is not suffering from pain or violent seizures. The medication will control or prevent the numbness to his leg.
Dr. Goldman is a friend of Chris's and is providing his services as a general doctor. He is acting as an expeditor and researcher to help Chris find the best Neurosurgeons and Neorologists. Dr. Goldman recommends obtaining several opinions from different doctors.
This week will include finding a doctor and deciding on a treatment.
Today, Chris received information from Dr. Goldman for several Neurosurgeons.
Chris made several appointments and trying for more. They include the following.
Tuesday, March 14, Second Opinion
In addition to the first evaluation and opinion given by Dr. Rosiello at Stony Brook, Chris has an appointment with another Neurosurgeon at Columbia-Presbyterian Neurosurgery Department of the Neurological Institute on Tuesday, March 14, 10am.
Wednesday, March 15, Medication Checkup with Neurologist
Chris will meet with the Stony Brook Neurology department doctors to get a checkup on proper dosage of the anti-seizure medication. Dr. Goldman originally prescribed this, and Chris is doing fine with it. This is a followup visit.
Wednesday, March 15, Chemotherapy Consult with Oncologist
Should this be the definite choice of treatment, Chris has a consult appointment at Stony Brook to discuss the treatment. The appointment will last about 2 hours and a family member must be present because there is a lot to remember, and to take notes, etc.
Monday, March 20, Another Opinion
Another opinion will be sought with a Winthrop Neurosurgeon.
Another Opinion, desired
Chris would like to meet with a Sloan-Kettering Neursurgeon.
Sloan-Kettering has a very attractive method of care. Each week, the doctors form a board of about 20 members to discuss each of the patients' cases to achieve the best possible treatment for each patient.
Chris has a lot of miscellaneous local tasks to perform today to organize all records and compile all updated information. He is making sure he doesn't leave any missing information when he meets with various doctors this week.
Visit to Columbia-Presbyterian for a 10am appointment with Dr. Cole, a Neurosurgeon. This is a second opinion of several opinions.
Although there is not a drastic change of opinion. More was learned.
Chris met with a second Nerosurgeon Dr. Bruce. One difference in thought is that he thinks the tumor could have been present for years. Although Stony Brooks' Dr. Rosiello also believes the mass is slow growing, he estimated the presence in terms of months.
Since there is no baseline for this growth, close monitoring of this mass is required to help characterize it.
Surgery is still not an option. The mass is incorporated into the brain tissue. There would be too much brain tissue to remove and would disable right side motor skill. Chris is side dominant.
Dr. Cole described this mass with the following analogy: Dye(tumor) in a sponge(brain). If you pour dye into a sponge, and want to remove the dye, you need to destroy the sponge.
So, The path from the Neurosurgeon still leads still to a Neurologist. There is no new information on chemotherapy or radiation treatment. The Neurology appointment is still scheduled for tomorrow to follow up on Chris's current medicine dosages.
Chris gained another appointment with Sloan-Kettering on Tuesday, April 4 for yet another opinion and advice. Sloan-Kettering's method of patient treatment includes forming a weekly board composed of about 20 doctors to review each patients' case and arrive to the best solution of treatment.
While Chris was in the vicinity of Sloan-Kettering while visiting Columbia-Presbyterian, he delivered to Sloan a copy of his chart including MRI's, CT's, pathological reports, and actual slides of the biopsy. While Stony Brook maintains the master sample of the biopsy, Chris was able to acquire several slides. Delivering this information is in the interest of promoting a head start in analysis of his case.
Chris also gained a consultation appointment for radiation treatment. This meeting will be held at Brookhaven National Lab. This is just another appointment to be briefed on a less likely possibility.
Still making as many appointments as possible.
Everyone is supporting and Chris is keeping a positive attitude.
Lt. Cole from Deputy Sheriff department confirmed Chris's graduation and success in the academy. Chris also has received his badge.
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Wednesday, March 15, 2000
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Two appointments at Stony Brook today: The Neurology and Oncology appointments.
The Neurologist gave Chris a medication "tune-up".
Today's meeting with the Oncologist gave overwheling, confusing, and disappointing news.
The oncology doctor said the tumor is a possible stage 3 or stage 4 (out of 4). It was previously believed to be stage 2 and slow and non-aggressive.
If the mass is at stage 3 or 4, the method at Stony Brook is to inject the chemotherapy drug directly to the area. Advised to see another Neurosurgeon.
To be more conclusive as to what stage the tunor is, Chris will need a larger biopsy. The first biopsy was not large enough to conclude what the tumor is doing.
Various types of chemotherapy treatments are offered depending on what stage the tumor is. There is also radiation treatment which has not been ruled out.
In fact, nothing has been ruled out and we are overwhelmed and confused due to differences in opinions.
Still looking forward to Sloan-Kettering and their board of 20 doctors.
At Columbia-Presbyterian yesterday, Chris was asked to meet with a Neurologist, after which Columbia will review Chris's case with a board of 10 doctors. Although Columbia wanted Chris to meet with a Columbia Neurologist, he had already scheduled the Neurology appointment for today at Stony Brook. Perhaps Columbia will accept and transfer this information from Stony Brook.
We are still trying to piece everything together.
Will call Sloan-Kettering to try before the scheduled April 4.
So far there is no medical or surgical answer.
No appointments today.
Chris will sleep in and call Dr. Goldman to catch him up on the situation.
Brookhaven Lab- Radiation consultation.
Since Stony Brook University Hospital is now affiliated with The Brookhaven National Lab, various medical functions and activities are held at BNL. One particular function is the radiation department, which Chris visited for a radiation treatment consulation.
Brookhaven National Lab was very informative and thorough on describing the methods of treatment. In addition, they presented a comprehensive video. They explained their brand new machine, but there is an even more breakthrough technology out there. Despite this new technology in the battle against brain tumors, not everybody is a candidate to benefit from such technologies. Specifically, the new technology targets more precisely the actual cancer cells as compared to the older generation technology, which targets a significant amount of normal tissue with the cancer cells.
Chris was very comfortable with the doctors and consultants at BNL and would strongly consider them if this is the chosen method of treatment.
The BNL consultants pointed Chris toward Sloan-Kettering or New York University to further pursuit the newer technologies.
Miscellaneous events from late last week:
Cancelled Winthrop. Decided not the cutting edge center for Neurosurgery.
Clare emailed Chris's case to Johns-Hopkins. Awaiting response, but will also call early this week.
Dr. Goldman has another research packet for Chris to pick up tomorrow.
Aquired the phone number for Mayo Clinic. Will call early this week.
Chris found another new technology in addition to the strong target focus radiation described in March 17. This information was found at the Johns-Hopkins web site. This technology requires a Boron injection which forces the target cells to stand out more predominantly such that the radiation can attacct these cells with more precision and focus.
Pick up new research packet from Dr. Goldman.
Information packet from Dr. Goldman had some more reading material.
Faxed Chris's information to Johns-Hopkins. Johns-Hopkins due to call tomorrow.
Hopefully will have a much better feel on direction after tomorrows appointments.
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Wednesday, March 22, 2000
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Two appointments:
(1) New York University Neurology or Oncology and
(2) a Neurosurgeon appointment at Sloan-Kettering.
Clare is not feeling well, stomach related. She did not accompany Chris today but both mom and dad went with Chris.
Two 'big' doctors both said today surgery is possible in combination with radiation.
New York University
Dr. Gruber is a Neuro-oncologist, which is everything but an actual surgeon. He is a Harvard graduate, has great credentials and was very personable. His impression is that the mass is operable. Dr. Gruber will act on this case with the team at NYU this week and on Friday, call Chris with an answer whether or not surgery is approved. If surgery is an answer, radiation is also likely required to finish the job.
When Chris mentioned gamma knife, radiosurgery, chemo, and other methods of treatment that he studied, Dr. Gruber said absolutely not, surgery and/or radiation is most likely.
Dr. Gruber and the Pathology department at NYU used the actual biopsy slides taken from Stony Brook. He mentioned he would have taken the biopsy differently. Instead of the two samples taken by Stony Brook, six different spots of the tumor would have been taken as the probe came outward from side to side of the mass.
Although he did not give a specific number on the one to four scale, Dr. Gruber described the mass as a "low grade tumor". He thinks it was there for a long time, probably for years. If we go about surgery for this, it may never come back. A patient of Dr. Gruber seen immediately prior to Chris was having a checkup for a similar case 22 years ago.
Chris has a positive feeling from Dr. Gruber and his positive attitude.
Dr. Patrick Kelley, who is not available this week (vacation) is supposedly THE top Neursurgeon in the country. Chris has an appointment with Dr. Kelley on Wednesday, March 29 at 9am. click here for a full Curriculum Vitae on Dr. Patrick Kelly.
Sloan-Kettering
Dr. Gutin, Neurosurgeon, also feels the tumor can be surgically removed or reduced. He also felt it was there for a long time. Dr. Gutin's down-to-earth personality helped convey the information to Chris. "Oh, good, look how dark this is on the MRI, like gelatenous material and defined, we can suck it out", Dr. Gutin descibed in laymans terms. Since Chris previously pictured this mass as such after the Stony Brook analysis, similar phrases has already been spoken, and another new positive outlook has been taken at Sloan.
An interesting test has been introducted, the Functional MRI Study. Like an MRI, the brain tissue will be analyzed. The additional feature to this test is the movement of arms and legs in order to analyze and map out what part of your brain is being used. This will produce a computer generated map to avoid removing active portions of brain tissue. The Functional MRI will determine how much can be removed and risk factors of probing various areas of the brain.
In addition, Dr Gutin feels the tumor is more toward the sensory than motor part of the brain. This is good because the sensory portion can regenerate itself. The motor area cannot regenerate itself as easily, if at all.
Summary of both visits today
Waiting until Friday for interpretation on Chris's case.
Seems like both NYU and Sloan was more positive because of higher volume of cases, experience, etc. Basically, NYU and Sloan has a better approach in presenting Chris's case.
Surgery has always been the first choice of treatment, but sources to this point exclaimed that it is not possible.
Stony Brook treated Chris by saying he had a lot of homework to do and that surgery was not an option. NYU and Sloan both concurred in prognosis and capability to provide treatment
While previous sources led Chris to believe chemotherapy was the primary solution, NYU and Sloan concurred no chemo, and wasn't mentioned without Chris mentioning it. Only surgery and standard radiation.
Radiation is a standard practice and at today's visit, learned that anywhere is good radiation treatment.
The current outlook, in the case of surgery, radiation will also be required to provide the total treatment. Whatever is not removed by surgery must be finished up with radiation.
Since the meeting with Sloan-Kettering, they are trying to move the April 4 Sloan Oncology appointment to a sooner date to accomodate Chris with making a decision in the near future.
The information from yesterdays' appointments gave a comfortable feeling on making a decision however, Johns-Hopkins is still working on an analysis for Chris. As another opinion from a big-hitter, Chris may visit Johns-Hopkins in Baltimore.
NYU
Pathologist wants "unstained slides". The slides initially delivered to NYU from Stony Brook were already stained by Stony Brook. Called upon Stony Brook to get unstained slides cut from the original matter. Brother Tommy delivered the slides from Stony Brook to NYU today.
No review or decision has been made therefore, because the surgeons on the panel want the results from Pathology.
Sloan-Kettering
A call was expected from Sloan to set up a functional MRI appointment. Instead, Chris called and left a message which also not returned yet.
Johns-Hopkins
No update from the review of the case.
Tuesday, April 4th's double appointment day created a conflict to visit both Johns-Hopkins and Sloan-Kettering. Chris cancelled Johns-Hopkins because it is better to continue to carry through with Sloan and try to reschedule Johns-Hopkins.
Sloan could not move appointment with the Neuroncologist because the Sloan doctor Chris saw, Dr. Gutin, is in coordination with this appointment.
The functional MRI for Sloan is scheduled on April 3 (Monday). Grandma Jean is undergoing a quadruple bypass operation, also on Monday. Chris will visit after his functional MRI.
For Friday, March 31, scheduled an appointment with the Radiosurgery department at Long Island Jewish.
NYU
NYU Neuroncologist (Dr. Gruber) and pathologist are both on travel this week. Because of the biopsy slide situation (see March 24), the delay of information from Dr. Gruber will extend until at least this Friday.
Tomorrow will test the coordination between the neurology department at NYU. We hope Dr. Kelly will have reviewed all of Chris's information by his appointment time.
Summary of Agenda
(1) (NYU) Visit Dr. Kelly tomorrow. Perhaps his opinion will be included with Dr. Gruber.
(2) (NYU) Wait for Dr. Gruber and Pathology conclusion. (Friday?)
(3) (Sloan) Wait for Functional MRI Appointment and conclusion of Dr. Gutin. (Monday)
(4) Johns-Hopkins reschedule on standby.
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Wednesday, March 29, 2000
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NYU
Appointment with Dr. Patrick Kelly at New York Univeristy. Dr. Kelly is mentioned by some as THE top Neurosurgeon in the country. click here for a full Curriculum Vitae on Dr. Patrick Kelly.
The meeting with Dr. Kelly today was interesting. Despite the first two Neurosurgeons' opinions, he is willing to perform surgery, like the Sloan neurosurgeons' take on the case. By looking at the same pictures everyone else did who estimated a golf ball, Dr. Kelly estimates the tumor to be the size of a tennis ball.
Dr. Kelly wants a couple of tests to further characterize the tumor. One test is a functional MRI, like Sloan. The second test is called magnetoencephalography (MEG). Both tests pinpoint the active and inactive parts of the brain to be as precise as possible to remove as much of the bad tissue as possible. The tests produce and electrostimulus, map out the brain, and create a database in order for a computer to assist the surgery. During surgery, similar tests also occur to keep precise updates on the data. Chris plans on making appointments tomorrow.
Dr. Kelly describes the surgery as the easy part (about 2 hours). The prediction of the outcome of how much brain deficit and rehabilitation is more difficult and not predicted yet. The two tests described above will help suggest the outcome after surgery. The tumor is so intricately involved with the normal brain operations, it may be difficult to predict the outcome.
Chemo and radiation supposedly do not work on a slow-growing tumor. Ideally, the entire mass should be removed. Up until now, the risk has been to high for previous neurosurgeons to commit to surgery.
Dr. Kelly answered all questions and is difficult to doubt with all of his experience and credentials. In so many words, he conveyed that if it were him or another family member, he would perform the surgery. It is not going to shrink, so get it out now.
Especially with Dr. Kelly being willing to operate, Chris also feels the surgery is the best option when comparing the alternatives. The alternatives are using chemotherapy and radiation, which may not work. If they do not work, then more drastic measures will be needed anyway. If surgery is performed, it seems like a better guarantee that the most bad tissue can be destroyed. Surgery however, almost makes certain that rehabilitation will be required to heal the deficits.
Dr. Kelly has performed about 5600 surgeries, 300 of them turned out negitively. Keep in mind however, Dr. Kelly takes the surgeries that nobody else wants. Perhaps the 300 had no chance anyway. Chris feels that that is how you get as good as Dr. Kelly.
Will continue with Sloans' appointment. Still waiting for Johns-Hopkins to set another Neurosurgeon.
For the next couple of days, Chris will try to focus on Graduation and enjoy the recognition for his hard work.
MEG-internet search "MEG MRI". I will try to find some good ones:
University of Colorado Health Sciences Center Biomagnetic Imaging Laboratory
Graduation ceremony, Suffolk County Deputy Sheriff. The ceremony was a great reward to cadets, now officers, and their family. The display of uniforms filled with dedicated, well-trained officers provided a momentous occasion for all families involved. We would also like to congratulate everyone on becoming part of a well deserved, elite part of society. Best wishes on the next part of the journey ahead.
There is a tremendous level of support for Chris from fellow officers and all other friends. The entire family truly feels the concern and best wishes from everyone and we deeply appreciate it. Thank you. It is quite an amazing and wonderful community.
Long Island Jewish Hospital
Appointment with Dr. Pollack (Radiation-Oncologist) at the Radiosurgery department at Long Island Jewish Hospital, regarding the gamma knife. This procedure is only beneficial for certain candidates. Although Chris is most likely not a candidate, it is still important to learn about all the various forms of treatment. The Radiosurgery appointment is at 3pm.
A primary characteristic of radiosurgery is to battle tumors which are no more than three to four centimeters in size. Additionally, the tumor needs to be obviously visible in MRI scans and other forms of diagnosis. Chris is most likely out of the specification for treatment by radiosurgery. Dr. Pollack politely explained that the first priority is to determine whether or not the tumor is operable and that a Neurosurgeon needs to make this decision. Fortunately, the two primary focal points are NYU and Sloan Neurosurgery departments for surgery pursuits.
Dr. Pollack provided very similar information as did Dr. Kelly(NYU) and Dr. Gutin(Sloan). Dr. Pollack also praised the work of Dr. Gutin(Sloan) and Dr. Kelly (NYU). The following is a summary of these three doctors' opinions, but primarily from the words of Dr. Pollack.
It is still not definitively certain whether the tumor is malignant or benign. The biopsy did not provide enough information. If the tumor is diagnosed as operable, surgery is still the unanimously decided best choice. With surgery, the mass can be removed with the assistance of brain mapping/monitoring described herein. During and after the mass removal, it can be fully classified.
When a tumor is observed in an MRI, the mass may infiltrate further than the visible part of the mass. This infiltration can be treated with both surgery and then radiation or chemotherapy to "mop-up" the rest of the mass. The use of radiation/chemotherapy is conditional on what stage the tumor is classified and type of cells.
As previously described, there are four stages of tumors: (1) benign, (2) low grade (some say "benign" or "not malignant" tissue), (3) malignant, (4) malignant, high grade. Assuming surgery, if the tissue is found to be stage one only, no further action is required. If the tissue is found to be stage two, there is some debate in the medical field as to the risk of not performing post-surgery radiation to "mop-up" an extra depth of tissue. In other words, stage two begins to pose a risk of malignant tissue, especially in the future after the surgery has been performed. Radiosurgery is not used to "mop up" tumor matter after surgery.
Most of the opinions Chris has gathered, including Dr. Kelly's, say the tumor is low grade (stage one or two). If the tumor is discovered malignant after surgery, post-surgery radiation or chemotherapy is certainly required. The choice between the two procedures will depend on the classification of the matter. If radiation, Dr. Pollack decribed the radiation treatment as "3-D Conformal Radiation", which is a focused beam of radiation to the area of interest. This outpatient procedure will last for 6 weeks, 5 times a week (Monday through Friday).
Dr. Pollack gave an outstanding impression along with Dr. Gutin(Sloan, Neurosurgeon) and Dr. Kelly(NYU, Neurosurgeon) and Dr. Gruber(NYU, Neuro-Oncologist). This is in contrast with the doctors at Stony Brook who claimed inoperable and took a guess that chemotherapy is the best choice of treatment. Dr. Pollack gave an unbiased opinion on the situation as he observed it, gave descriptions of methods, doctors and hospitals. These views tied a knot with the views of Dr. Kelly and Dr. Gutin. Dr. Pollack did not feel the need to consult Johns-Hopkins for yet another opinion because Dr. Kelly(NYU) and Dr. Gutin are among the best and even more so, if they concur on the surgery decision. He also added that it is indeed important to get the right doctor for this case.
Summary of Agenda
(1) (NYU) Continue to pursue pre-operative tests Functional MRI and MEG. Since Wednesday, there has been no success in booking an appointment with the staff at NYU. This is currently looking like first choice.
(2) (Sloan) Gather conclusion of pre-operative test Functional MRI (Monday).
(3) Continue with Sloan Neuro-oncologist appointment (Tuesday).
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