Friday, June 10, 2011
Appt w/ Dr. Al-Mefty
Charles just heard back from Dr. Al-Mefty's office. He is the neurosurgeon at Brigham & Womens we were referred to. He has an appointment Friday June 24th at 9AM. We'll let you know how it goes!
Monday, June 6, 2011
Appt with Neuro-Ophalmologist
This morning Charles had his appointment with Dr. Prasad, neuro-opthalmologist. The doctor was really great, he was very thorough and explained everything well.
Charles first went in for a test of his peripheral vision, in which he had to press a button whenever he saw a light flash. He did it with each eye and said that he definitely saw a lot more flashes of light with his left eye than his right!
Dr. Prasad then had him read a traditional eye chart, which was much easier with the left eye than the right. He did some looking around and having Charles follow him, shining stuff in his eyes, wiggling his fingers, all that. He then did a color blindness test which had interesting results. Charles had a much harder time deciphering the numbers with his right eye. He is not color-blind and still got a lot of them correct, but it was MUCH harder for him to do. He had not even realized that he had any problem with differentiating colors. Mostly it's because his eye doesn't really focus on much and he has to look around because he can only see out of a small portion of his eye. He also did a depth perception test which thankfully he did very well with.
The results were that things look really good. His eyesight is 20/40, and he has some problem with color. When the doctor looked in Charles' eyes, he could see that the left nerve was healthy, but that the right nerve was a pale color, which happens when it is damaged. There is nothing to be done to reverse this damage. There are studies involving stem cells and what not looking to see if there is any way to revive damaged nerves, but there is nothing that they can do now.
His reccommendation was to of course go see the other doctors and get all of the information that we can and make our decision with the most information possible. But he said to be skeptical of both of them and don't jump into any decisions that could do him harm. From the point of view of the neurology department, as long as Charles' eyesight isn't getting worse, they don't see any reason to do radiation or surgery. We also met with the Chair of the Neurology Department, who is the husband of one of Suzanne's childhood friends. He also gave his opinion that he thinks Charles should wait it out. He said that meningiomas are benign and aren't going to kill you, so if it's not causing vision problems then why do something that could be harmful.
Dr. Prasad also said to be skeptical of what the radiation oncologists will say because while they do narrow down where the radiation is exposed to, they sometimes overstate how precise it is. In addition, Dr. Samuels said that sometimes a neurosurgeon will try too hard to get all of the tumor, and in turn do more damage to the optic nerve than if they had just planned to leave more of the tumor there. Dr. Prasad said that he doesn't see a true representation of the patients and that there are sure more people than not that are OK, but in his work he sees many patients who have had damage done to their optic nerves because of having radiation or surgery.
Charles will be going back in September for another exam to see if his sight has changed at all since today.
While we appreciate their point of view and think that it is important to have and to consider, we will of course see the other doctors and take it all into consideration. We are both wary about the concept of not doing anything- especially Charles. As far as he feels, waiting is what made things get so bad in the first place. If he had gotten the tumor out earlier, he wouldn't have even had any problem with the eye sight, the doctor may have been able to remove all of the tumor and he wouldn't even have to be dealing with any of this anymore. And there's also the fact that if he waits and the tumor keeps growing, it could potentially grow to be quite larger before there are any vision problems and at that point he might have to do Surgery AND radiation, or if he did radiation, it would be even more dangerous because there would be more tumor to irradiate. The idea that he could do nothing and be fine is an awesome one, but neither of us think that's really going to happen. With how quickly his tumor has grown in comparison to those people who have them for decades with little to no growth make us more likely to think that it's inevitably going to grow and cause more problems. There's also the fact that if it keeps growing Charles would be likely to have another seizure. He has been lucky so far in that he has been home when he has had his seizures, but he could definitely be unlucky to have one while driving or at work (hello fire and knives!).
So, that's what we know for now. He still needs to set up the appointments with Dr. Al-Mefty and Dr. Shih at Mass General. We'll let you know more when we know more! Until then, thanks for your love and support :)
Charles first went in for a test of his peripheral vision, in which he had to press a button whenever he saw a light flash. He did it with each eye and said that he definitely saw a lot more flashes of light with his left eye than his right!
Dr. Prasad then had him read a traditional eye chart, which was much easier with the left eye than the right. He did some looking around and having Charles follow him, shining stuff in his eyes, wiggling his fingers, all that. He then did a color blindness test which had interesting results. Charles had a much harder time deciphering the numbers with his right eye. He is not color-blind and still got a lot of them correct, but it was MUCH harder for him to do. He had not even realized that he had any problem with differentiating colors. Mostly it's because his eye doesn't really focus on much and he has to look around because he can only see out of a small portion of his eye. He also did a depth perception test which thankfully he did very well with.
The results were that things look really good. His eyesight is 20/40, and he has some problem with color. When the doctor looked in Charles' eyes, he could see that the left nerve was healthy, but that the right nerve was a pale color, which happens when it is damaged. There is nothing to be done to reverse this damage. There are studies involving stem cells and what not looking to see if there is any way to revive damaged nerves, but there is nothing that they can do now.
His reccommendation was to of course go see the other doctors and get all of the information that we can and make our decision with the most information possible. But he said to be skeptical of both of them and don't jump into any decisions that could do him harm. From the point of view of the neurology department, as long as Charles' eyesight isn't getting worse, they don't see any reason to do radiation or surgery. We also met with the Chair of the Neurology Department, who is the husband of one of Suzanne's childhood friends. He also gave his opinion that he thinks Charles should wait it out. He said that meningiomas are benign and aren't going to kill you, so if it's not causing vision problems then why do something that could be harmful.
Dr. Prasad also said to be skeptical of what the radiation oncologists will say because while they do narrow down where the radiation is exposed to, they sometimes overstate how precise it is. In addition, Dr. Samuels said that sometimes a neurosurgeon will try too hard to get all of the tumor, and in turn do more damage to the optic nerve than if they had just planned to leave more of the tumor there. Dr. Prasad said that he doesn't see a true representation of the patients and that there are sure more people than not that are OK, but in his work he sees many patients who have had damage done to their optic nerves because of having radiation or surgery.
Charles will be going back in September for another exam to see if his sight has changed at all since today.
While we appreciate their point of view and think that it is important to have and to consider, we will of course see the other doctors and take it all into consideration. We are both wary about the concept of not doing anything- especially Charles. As far as he feels, waiting is what made things get so bad in the first place. If he had gotten the tumor out earlier, he wouldn't have even had any problem with the eye sight, the doctor may have been able to remove all of the tumor and he wouldn't even have to be dealing with any of this anymore. And there's also the fact that if he waits and the tumor keeps growing, it could potentially grow to be quite larger before there are any vision problems and at that point he might have to do Surgery AND radiation, or if he did radiation, it would be even more dangerous because there would be more tumor to irradiate. The idea that he could do nothing and be fine is an awesome one, but neither of us think that's really going to happen. With how quickly his tumor has grown in comparison to those people who have them for decades with little to no growth make us more likely to think that it's inevitably going to grow and cause more problems. There's also the fact that if it keeps growing Charles would be likely to have another seizure. He has been lucky so far in that he has been home when he has had his seizures, but he could definitely be unlucky to have one while driving or at work (hello fire and knives!).
So, that's what we know for now. He still needs to set up the appointments with Dr. Al-Mefty and Dr. Shih at Mass General. We'll let you know more when we know more! Until then, thanks for your love and support :)
A couple more details from the radiation oncology appointment
Just a couple more details that I left out when I made my last update about the radiation oncology appointment.
1) The size of Charlie's tumor is 1.4cm at its longest. It's more of an oblong shape, it's not a sphere, so that's where it's biggest. For reference, his tumor when they removed it was 2.4cm x 2.4cm x 1.5 cm (I think). So it's considerably smaller, BUT some peoples tumors are measured in MMs...
2) Dr. Alexander DID say that the risk of complete blindness due to radiation was RARE, but possible.
1) The size of Charlie's tumor is 1.4cm at its longest. It's more of an oblong shape, it's not a sphere, so that's where it's biggest. For reference, his tumor when they removed it was 2.4cm x 2.4cm x 1.5 cm (I think). So it's considerably smaller, BUT some peoples tumors are measured in MMs...
2) Dr. Alexander DID say that the risk of complete blindness due to radiation was RARE, but possible.
Saturday, June 4, 2011
Details on the appointment with the Radiation Oncologist
Sorry for the delay on posting the details of the appointment!
I was happy that the Dr. Alexander confirmed what I had learned through my research and that he was on the same page with what I was thinking. What the radiation oncology department at Brigham and Womens can offer is either stereotactic radiosurgery (SRS), or Intensity Modulated Radiation Therapy (IMRT).
SRS, also known as Gamma Knife or Cyber Knife involves a 1 day outpatient treatment that involves higher levels of radiation exposure at one time. The benefit of this clearly is that it is over after one day. However, SRS is not appropriate for tumors that are located where Charlie's tumor is because it is on the optic nerve. In order to keep his vision safe, the level of radiation must be lower than what is involved in SRS.
IMRT is the radiation at Brigham and Womens that Charles could do. IMRT allows doctors to customize the radiation dose by modulating, or varying, the amount of radiation given to different parts of the treatment area. This modulation is done in highly accurate, three-dimensional detail, according to the shape, size, and location of the tumor. IMRT uses a linear accelerator equipped with a multi-leaf collimator to shape the radiation beams and vary their intensity. This allows the radiation to be very precisely targeted to the tumor or area at risk, while minimizing the radiation to normal surrounding organs.
The risks to this radiation is that in order to irradiate his tumor, radiation would be exposed to his optic chiasm, which is the area where the optic nerves meet. Too much radiation could involve the complete and total loss of his sight. I'm not entirely sure how likely that would be, they didn't give odds on that. In addition, the other risk to radiation is the possibility that the radiation exposure could result in cancer in the long term. We all know that exposure to radiation can cause cancer, and while the odds are low, there is definitelty a risk to consider in choosing any type of radiation. If Charles was 60+, they wouldn't hesitate to use radiation, but because he is so young, he has much more opportunity to develop radiation related cancer. Dr. Alexander, the radiation oncologist definitely wanted to get across that this is not ideal for Charles and while it may work, there are definite risks involved.
However, Dr. Alexander eagerly recommended Proton Beam radiation at Mass General Hospital. In my research, I had pretty much figured that if Charles was indeed not eligible for SRS, then Proton Beam would be a better option than IMRT. While similar, Proton Beam radiation allows for more precision and less radiation exposure to healthy tissue. If Charles does have radiation at any point, it is most likely going to be Proton Beam. There are only 9 centers in the country that have Proton Beam technology, and we are fortunate enough to live an hour away from one of them!
Charles' other option besides Proton Beam radiation is another surgery. Charles really doesn't want to go through surgery again. He hates having to stay in hospitals and the recovery was hard on him. Yes, it went well in the fact that he didn't have any complications other than his sight, but it was still hard to go through and he really doesn't want to go through it again. Dr. Golby said that if he were to do surgery, she would have him go to Dr. Ossama Al-Mefty, who Dr. Alexander called "a magician", he said "there are surgeons, and then there is this guy, he's a magician". He specializes in exactly what Charles has- a skull base meningioma. Apparently, he would do the best job. Dr. Golby said that he was the best doctor for this in the world.
HOWEVER, Dr. Golby does not believe that Dr. Al-Mefty would be able to get all of the tumor out. If he can't get all of the tumor out, Charles may likely have to go through radiation anyway, either immediately after surgery, or after some time. Since his tumor reproduces more rapidly than the average Grade I tumor, it would be more likely to grow again if not all of the tumor is removed. So Dr. Golby thinks that if he has to have radiation anyway, then why go through surgery a second time in addition. However, if there is a chance that all of the tumor could be removed, then we should consider it. Based on what Dr. Alexander said about radiation, surgery might be a better option because of the risk that the radiation will render him completely blind. Even though Charles said that he could make it as "The Blind Chef" no one wants that to happen. We will have to get a lot of information from Mass General on the risks related with the Proton Beam radiation. In addition, we will see what Dr. Al-Mefty has to say.
I think it's a good idea to really pay attention to any negatives that each doctor say about their own specialty. Dr. Alexander's concerns about radiation are something I take very seriously, however Dr. Golby's opinion on surgery are also very important. The appointment with Dr. Alexander was good in that it narrowed it down to two possibilities - Proton Beam at Mass General, or Surgery with Dr. Al-Mefty at Brigham & Womens. We will have to meet with them to know what to decide on.
When I was researching after the appointment with Dr. Golby, I really got held up on the concept of Charles getting cancer in the long term after irradiating the tumor. This is especially painful to think about because I can't help but think of Jeremy and everything that he and his family have gone through due to his brain cancer. Charles and I love each other so much, and whatever will give us the best chance to have a long, happy, healthy life together, is what he will decide to do. It definitely didn't lessen my concern about cancer meeting
with Dr. Alexander because he thought it was something to definitely consider in the decision. Even if the risk is low, he put a lot of emphasis on the fact that having surgery is not going to do anything to possibly cause cancer in 15 years.
Before meeting with Dr. Alexander, Charles didn't really want to consider surgery, but now he said that he will, so we will meet with them and see where we go from there.
Please let me know if you have any questions or if it seems like I left something out. Since it's been a few days, I very well likely did.
I was happy that the Dr. Alexander confirmed what I had learned through my research and that he was on the same page with what I was thinking. What the radiation oncology department at Brigham and Womens can offer is either stereotactic radiosurgery (SRS), or Intensity Modulated Radiation Therapy (IMRT).
SRS, also known as Gamma Knife or Cyber Knife involves a 1 day outpatient treatment that involves higher levels of radiation exposure at one time. The benefit of this clearly is that it is over after one day. However, SRS is not appropriate for tumors that are located where Charlie's tumor is because it is on the optic nerve. In order to keep his vision safe, the level of radiation must be lower than what is involved in SRS.
IMRT is the radiation at Brigham and Womens that Charles could do. IMRT allows doctors to customize the radiation dose by modulating, or varying, the amount of radiation given to different parts of the treatment area. This modulation is done in highly accurate, three-dimensional detail, according to the shape, size, and location of the tumor. IMRT uses a linear accelerator equipped with a multi-leaf collimator to shape the radiation beams and vary their intensity. This allows the radiation to be very precisely targeted to the tumor or area at risk, while minimizing the radiation to normal surrounding organs.
The risks to this radiation is that in order to irradiate his tumor, radiation would be exposed to his optic chiasm, which is the area where the optic nerves meet. Too much radiation could involve the complete and total loss of his sight. I'm not entirely sure how likely that would be, they didn't give odds on that. In addition, the other risk to radiation is the possibility that the radiation exposure could result in cancer in the long term. We all know that exposure to radiation can cause cancer, and while the odds are low, there is definitelty a risk to consider in choosing any type of radiation. If Charles was 60+, they wouldn't hesitate to use radiation, but because he is so young, he has much more opportunity to develop radiation related cancer. Dr. Alexander, the radiation oncologist definitely wanted to get across that this is not ideal for Charles and while it may work, there are definite risks involved.
However, Dr. Alexander eagerly recommended Proton Beam radiation at Mass General Hospital. In my research, I had pretty much figured that if Charles was indeed not eligible for SRS, then Proton Beam would be a better option than IMRT. While similar, Proton Beam radiation allows for more precision and less radiation exposure to healthy tissue. If Charles does have radiation at any point, it is most likely going to be Proton Beam. There are only 9 centers in the country that have Proton Beam technology, and we are fortunate enough to live an hour away from one of them!
What Is Proton Beam Therapy?
The characteristics of proton beam therapy enable physicians to deliver higher, more conformed doses to tumor volume while almost completely sparing normal healthy tissue.
Protons are hydrogen atoms whose electrons have been removed. Proton beam therapy uses a special machine called a cyclotron or synchrotron to energize protons. Protons are extracted from the cyclotron or synchrotron and directed with magnetic fields to the tumor. The depth of penetration of the protons is related to their energy and can be precisely controlled to match the location of the tumor.
Protons deliver the majority of their energy at a very narrow area within the body. This unique dose delivery property of protons is known as the Bragg Peak. We can manipulate the Bragg Peak area to deliver the desired radiation dose to the tumor itself without any exit dose beyond the tumor. Conventional external beam radiation therapy uses photons or x-rays that enter and exit through the body. The special properties of protons generally reduce the radiation dose to the uninvolved normal tissues surrounding the tumor.
Principles of Proton Beam Therapy
Irregularly shaped lesions located near critical structures, tumors in children, and large tumors near any critical organ are well suited for proton beam therapy. Protons have a physical advantage over gamma rays and x-rays when it comes to sparing normal tissues. Protons deposit most of their radiation energy in what is known as the Bragg Peak, which occurs at the point of greatest penetration of the protons in tissue. The exact depth to which protons penetrate, and at which the Bragg Peak occurs, is dependent on the energy or modulation of the proton beam. This energy can be very precisely controlled to place the Bragg Peak within a tumor or other tissues that are targeted to receive the radiation dose. Because the protons are absorbed at this point, normal tissues beyond the target receive very little or no radiation. Proton energy can be adjusted to match the depth of the target with a sharp drop in dose beyond the Bragg Peak.
Tumors can have very irregular shapes and can be located close to critical organs. Every patient’s tumor shape, size and location are unique. Patient specific hardware, which helps sculpt the proton beam, is customized to maximize the dose to the tumor while minimizing the dose to normal structures. The shaping of the proton beam can also be controlled by magnetically scanning across the tumor volume. Aiming proton beams, each with customized field shaping, from various directions further ensures that the dose to normal tissues is reduced as much as possible, therefore reducing the risk of treatment related complications.
Charles' other option besides Proton Beam radiation is another surgery. Charles really doesn't want to go through surgery again. He hates having to stay in hospitals and the recovery was hard on him. Yes, it went well in the fact that he didn't have any complications other than his sight, but it was still hard to go through and he really doesn't want to go through it again. Dr. Golby said that if he were to do surgery, she would have him go to Dr. Ossama Al-Mefty, who Dr. Alexander called "a magician", he said "there are surgeons, and then there is this guy, he's a magician". He specializes in exactly what Charles has- a skull base meningioma. Apparently, he would do the best job. Dr. Golby said that he was the best doctor for this in the world.
HOWEVER, Dr. Golby does not believe that Dr. Al-Mefty would be able to get all of the tumor out. If he can't get all of the tumor out, Charles may likely have to go through radiation anyway, either immediately after surgery, or after some time. Since his tumor reproduces more rapidly than the average Grade I tumor, it would be more likely to grow again if not all of the tumor is removed. So Dr. Golby thinks that if he has to have radiation anyway, then why go through surgery a second time in addition. However, if there is a chance that all of the tumor could be removed, then we should consider it. Based on what Dr. Alexander said about radiation, surgery might be a better option because of the risk that the radiation will render him completely blind. Even though Charles said that he could make it as "The Blind Chef" no one wants that to happen. We will have to get a lot of information from Mass General on the risks related with the Proton Beam radiation. In addition, we will see what Dr. Al-Mefty has to say.
I think it's a good idea to really pay attention to any negatives that each doctor say about their own specialty. Dr. Alexander's concerns about radiation are something I take very seriously, however Dr. Golby's opinion on surgery are also very important. The appointment with Dr. Alexander was good in that it narrowed it down to two possibilities - Proton Beam at Mass General, or Surgery with Dr. Al-Mefty at Brigham & Womens. We will have to meet with them to know what to decide on.
When I was researching after the appointment with Dr. Golby, I really got held up on the concept of Charles getting cancer in the long term after irradiating the tumor. This is especially painful to think about because I can't help but think of Jeremy and everything that he and his family have gone through due to his brain cancer. Charles and I love each other so much, and whatever will give us the best chance to have a long, happy, healthy life together, is what he will decide to do. It definitely didn't lessen my concern about cancer meeting
with Dr. Alexander because he thought it was something to definitely consider in the decision. Even if the risk is low, he put a lot of emphasis on the fact that having surgery is not going to do anything to possibly cause cancer in 15 years.
Before meeting with Dr. Alexander, Charles didn't really want to consider surgery, but now he said that he will, so we will meet with them and see where we go from there.
Please let me know if you have any questions or if it seems like I left something out. Since it's been a few days, I very well likely did.
Thursday, June 2, 2011
Radiation Oncology appointment @ BWH
This morning we left the house just before 7 to get to a 9am appointment at Brigham & Women's Hospital in Boston. Thankfully the appointment was ACTUALLY at 9:30 (or at least we think) because we didn't actually get in the building until 8:54 :) Stupid traffic! It should only take about an hour...
We met with Dr. Alexander, Radiation Oncologist, and the nurse on the case, Sheila - who were both great. After some questions and a routine neurological examination, they got down to business.
Dr. Alexander had discussed Charles' case with the tumor board or something like that, and Dr. Golby. The general consensus was that Charles was not a candidate for stereotactic radiosurgery, and that while he could get radiation at BWH, his best options are either A) another craniotomy, this time by Dr. Al-Mefty, or B) Proton Beam radiation at Massachusetts General Hospital. This went along with what I had been thinking after gathering a lot of information. We will be making appointments with each to thoroughly discuss details and options and make the decision from there. Charles really does not want to have to go through surgery again, but if that ends up being the best option, he will. Dr. Alexander seemed to be more optimistic about surgery than Dr. Golby was... which is interesting since Dr. Golby is a neurosurgeon and Dr. Alexander is not! Or rather, he seemed more concerned with the negative aspects of radiation, which I really appreciated. They both have their pros and cons and we don't have enough information now to know what will be the best option for him at this time. We are hoping to get appointments with both Dr. Al-Mefty and Dr. Shih at MGH very soon.
Charles also has an appointment at BWH Monday morning at 9 with Dr. Prasad, a neuro-ophthalmologist.
That's the summary. I will post again later with the details for those who want to know them!
Love,
Sue
We met with Dr. Alexander, Radiation Oncologist, and the nurse on the case, Sheila - who were both great. After some questions and a routine neurological examination, they got down to business.
Dr. Alexander had discussed Charles' case with the tumor board or something like that, and Dr. Golby. The general consensus was that Charles was not a candidate for stereotactic radiosurgery, and that while he could get radiation at BWH, his best options are either A) another craniotomy, this time by Dr. Al-Mefty, or B) Proton Beam radiation at Massachusetts General Hospital. This went along with what I had been thinking after gathering a lot of information. We will be making appointments with each to thoroughly discuss details and options and make the decision from there. Charles really does not want to have to go through surgery again, but if that ends up being the best option, he will. Dr. Alexander seemed to be more optimistic about surgery than Dr. Golby was... which is interesting since Dr. Golby is a neurosurgeon and Dr. Alexander is not! Or rather, he seemed more concerned with the negative aspects of radiation, which I really appreciated. They both have their pros and cons and we don't have enough information now to know what will be the best option for him at this time. We are hoping to get appointments with both Dr. Al-Mefty and Dr. Shih at MGH very soon.
Charles also has an appointment at BWH Monday morning at 9 with Dr. Prasad, a neuro-ophthalmologist.
That's the summary. I will post again later with the details for those who want to know them!
Love,
Sue
5555555555555555555555555555555555555555t
That was our cat, Emmy saying hi. She's currently licking macaroni & cheese bits off of a plate on my desk... she loves carbs.
Holy Tornadoes, Batman!
If anyone is/was worried, we are fine and weren't affected much by the weather yesterday. I was of course very worried and was watching the reports closely at work in Framingham because it looked like the tornadoes paths were going to be very close to our apartment in Grafton. Thankfully for us the worst of it stayed a little south of us and the storm had weakened enough by the time it got here. There was a confirmed tornado touch down in Oxford which is two towns west of us. Charles was busy at work and didn't have any idea how bad things were! We're both very happy that everyone that we know are OK and wish the best for those who have been affected. We went to college in Springfield and still have several friends in the city and the area. I'm hoping to be able to get out there and volunteer some time soon.
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