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!

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.

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

A Regretful Update

It has been lovely not having anything to update this blog with in the past 15 months...

Things have been fantastic for us since Charles has recovered from his surgery. His recovery was swift and he has been much healthier. He has even lost 56 pounds since his surgery! AWESOME!!! In addition, we have had a lovely year plus living together(now in a nicer apartment!), and we even got engaged in September! Woohoo! :) The wedding is planned for next June (2012).

We haven't been thinking too much about his tumor, but it has always been in the back of our minds. The tumor/surgery did have an effect on his sight in his right eye which is permanent. He cannot see far to the right, so basically he has no peripheral vision on the right. He has been accommodating for it when he drives etc. to make sure he has been safe. It is a nuisance, but overall, not bad if it's the only lasting effect from the ordeal. He has been on his Keppra since his initial seizure in 2008, and has not had any seizures since the one before the surgery.

Charlie was supposed to have his annual MRI in January, but when they called to confirm the appointment, he was informed that his health insurance no longer worked with that hospital, so we had to postpone the MRI. It took a couple months for him to get his health insurance changed so that he could still go to Brigham & Womens. Once that was done, his MRI and appointment were scheduled for May 14th and 20th.

On the 20th we met with Dr. Golby, who has taken over Charles' case since Dr. Black's retirement. She was very to the point and informative. She was curious if there had been any cause that we knew of as for why as a young healthy male he would have gotten a meningioma, but we have no idea.. She did a test to see how bad Charlie's vision is impaired and discussed his Keppra dosage.

And then she told us the news.. the tumor has begun growing back.

Thankfully, it is still very small, she showed that it was about the size of the tip of her pinkie finger. So the sooner it is treated the better.

We wondered if it would have been better to have the MRI done 4 months ago, but it's also possible that 4 months ago it would have been too small to show on the MRI and we wouldn't know about it at all for another year, so I think that we are lucky to have found it now so that it can be taken care of. We were told when they got the results from the pathology that the cells were somewhat rapidly reproducing, so unfortunately there was a higher risk of recurrence, especially since it had not been completely resected. We remained positive in hopes that Kirby would not attempt a comeback.

Dr. Golby said the options are surgery or radiation. Her recommendation is radiation but we should look into whatever we want whether it be one or both. She said that as far as surgery goes, she would send is to the BEST neurosurgeon for skull base tumors in the WORLD. He probably would be optimistic about the results of surgery, however, while he would probably not tell us, he would not be able to get all of the tumor. The risk of surgery is of course all the risks of brain surgery- infection, fluid leakage, the increase in scar tissue given it would be the second surgery, and the likelihood that Charles would lose all sight in his right eye. She said that since he would not be able to get all of the tumor out with the surgery, likely Charles would then still need radiation.

The risks with radiation increase with the size of the area needing to be treated. So if Charles' tumor was large, maybe surgery would be a better option and then radiology later. However, since it is still very small, the radiation shouldn't be that much, and it's better to get it done ASAP. It seemed to both of us that from the information she gave, that it would make sense to go ahead and try the radiation. However, she would not tell us more about the radiation and couldn't answer any questions, she told us to discuss it with the radiologist. Since the appointment was Friday afternoon and we finally got in to see her 2 hours after the scheduled appointment, they were unable to set up appointments for him (she had been called into the OR, so I hope that person is doing OK because they were obviously the priority!). We expect to hear back from them early this week. They are going to set up appointments with the radiologist and the neuro-ophthalmologist for the same day. Thankfully Charles still brought up the idea of going to see the neuro-ophthalmologist, Dr. Golby said it was a good idea in order to get a base-line of how his eye is before treatment.

I plan to do plenty of research myself. I plan to reach out again to the wonderful people at Meningioma Mommas who were very supportive the first time around and I still feel bad about not updating and putting the word out there that surgery can go well and recovery can be (relatively) easy. I know I had read on there at one point that it was a good idea to have a cognitive test done to be able to measure any sort of cognitive impairment that can occur when a tumor is in the frontal lobe. I don't remember if this related to surgery, radiation, or both, but I will keep it in mind.

Charlie is doing ok. He just keeps saying that he is not worried and he never has been. He is just taking everything in stride as it comes, and staying positive, which is what helped him through this journey thus far. I will try to stay positive and supportive, but I can't help but show how upset I am. I started crying during the appointment and was unable to talk about it for a while because I knew I would just break down... I haven't really had a good break down about it yet, so I imagine it is due to come soon... haha. But, that's OK. I don't know at all the time frame for this, but I hope it will not interfere with the wedding and that he will be back to good health for then. He deserves that.

I will continue to update this blog with information as we receive it. We welcome any messages. Please keep Charlie in your mind and wish the best for him.

A recent picture of Charlie with his nephew :)

As always, you can support Charlie and people like him by donating to help fund research into meningiomas, the most prevalent and yet underfunded type of primary brain tumor.

Learn more, get support, and make a donation. - Meningioma Mommas


In addition, I just wanted to note my condolences to the Reichman family and that my thoughts are with them. Jeremy was a co-worker of mine who recommended Dr. Black to us. He had been diagnosed with brain cancer (not a meningioma) about 6 months after Charles was diagnosed. He championed through chemo, radiation, medications, clinical trials and surgery and had been doing well. Unfortunately the tumor quickly grew back and began pressing on his brain stem, and there was nothing left for them to do. He passed away on April 6th. He was upbeat and optimistic throughout and beat the odds that were against him and was able to have a couple extra years with his children and family. I'm sure that I will continue to think of him often, and am humbled by his memory.

Follow-up Appointment

Charlie's follow up appointment to get his stitches out was yesterday. I made sure to get a quasi-decent photo of his stitches in the waiting room (with my phone) before he got them out.


The woman that took the stitches out was quite strange. The whole appointment was kind of weird, everyone was very rushed! The woman came in and acted like we'd met before, which we hadn't, we have no idea who she was...

Getting the stitches out was apparently decently painful. They had been in a little longer than usual because of when they had openings for appointments, and his head is healing pretty well so basically to get the stitches out she had to tear up lots of scabs and disrupt his healing. And of course to start with he had a pretty bad headache and hadn't slept well the night before so getting the stitches out made it even worse. But he's a trooper. From what he said I imagine I'd have cried or made them numb it or something! Hah. I'm a wimp though :) He said he just wanted it over with, and really it only took her a minute to get them all out. It bled in several spots where there had been scabs. And poor Charles has wanted to itch his head SO BADLY!! I told him once in his life he's NOT allowed to pick at his scabs! Haha. I told him he could pick at other scabs all he wants but NOT these ones!!! :) I understand it's hard, but he's doing a good job :)

I brought a list of questions with me and the woman that took his stitches out took them from me and started answering them without us really asking and elaborating what my notes (for myself to ask) had meant. She then took my list of questions and brought them to Dr. Black. The whole thing was kind of strange, I think more so because she was like a crazy whirlwind and never really explained what she was doing. I don't know.

When Dr. Black came in, the first thing he did was confuse me!!! He said Charles was doing really well he looked good, he was pleased how well he was healing and that the MRI after the surgery looked great, there was no tumor remaining. So I was like "whaaaaaaaaa?" Eventually when he was done talking I went back to the issue and said I wanted to clarify, that we had been told that not all of the tumor was removed because some of it was wrapped around the optic nerve. And then Dr. Black was kind of like, 'oh yeah..' I don't remember what he said exactly but we were both thinking he'd forgotten/didn't realize it was Charles, I don't know.. I mean I understand if he doesn't remember everything about Charles's surgery off the top of my head but there's a big difference between there's still tumor and it's all gone! But thankfully he clarified that there IS still tumor, he said a few millimeters in size, and that it DOES NOT show up on the MRI. So that will be really important to know in the future if A) they say the MRI is clean we know there are still tumor cells there and B) if they see tumor cells on the MRI that would mean that they have multiplied since the last MRI.

In addition, he said that the pathology came back that it was benign, but that the rate in which the cells multiplied was 11%, and he said normally it's 6-7%, and then he said "but we don't really know what that means". YAY for underfunded Meningioma research!! /sarcasm. I would assume that it would mean that his tumor is more likely to grow back, or grow back more quickly. But I take it that they don't have any proof of that. That's just my assumption because that would seem to make sense.

On the topic of radiosurgery, Dr. Black explained that there are 2 schools of thought:
1) The tumor is right now the smallest it would ever be so to get in there now and kill the remaining tumor cells would be easier because there are few of them and then maybe we'd be done with it.
2) That right now the tumor is so small it's not going to cause him any problems and it could be fine long term, so if there's no problems why go through a procedure that is harmful to your body and has it's own set of side-effects.

Dr. Black said that he is of the 2nd philosophy, and that doing the radiosurgery wasn't an immediate concern of his. Because I was really interested in knowing if it should be done or not and when he said we could get an appointment with the radiologist to discuss it further. (One of the assistants said he would look into that and get back to us... who knows if that will happen or not).

My personal belief is that it might be better to be a little more pro-active with it. Of course I don't want Charles to have to go through any of this anyway, but... waiting has proven not to have been beneficial as far as I'm concerned. Of course it all worked out well because he got a good doctor and he's OK, etc but... if he hadn't waited, if they had done something about the tumor earlier, we wouldn't be in this predicament. None of the 3 neurosurgeons he spoke with found any evidence that the tumor was wrapped around the optic nerve. As of August, they were saying that it was resting on it and but not wrapped around it which was great! But turns out it was wrapped around it. So I think either that happened quickly or it was was wrapped around it in August and they just couldn't tell based on the scans (like now they said the tumor doesn't even show up). And the question is WHEN did it become wrapped around it. If he had had surgery earlier, would the doctor have been able to resect 100% of the tumor and the radiosurgery wouldn't even be an issue? So my thought is that why should we wait for the tumor to cause a problem again and deal with it then? It's all a measure of risk, I know that. There is risks for not doing it, but there are risks for doing it as well. We'll take it 1 step at a time and I will not worry about it. We can do research and we can talk to the radiologist and we can go from there.

Charles has another appointment for a 3 month MRI on January 13th.

They said he could go back to work whenever he wants, just to give it at least 4 weeks. We're thinking 6 weeks can't hurt, we'll see how he's feeling... I think it's something to be very careful with because his job is SO physically demanding. And they said that a gradual return to work is fine (I wanted to see if they could put that down on his return to work instructions, I think it's VERY important).

Poor Charles had a moment of happiness... Dr. Black said he could drive again when he felt up to it. And then I said something about his seizure, and Dr. Black was like oooh yeah, 6 months from the time of the seizure. Ooooh poor Charles! Dr. Black said that he should stay on the Keppra for a year or so, but that the odds of him having another seizure were very very slim because the tumor is essentially gone.

We asked whether his head pulsating was normal and they said yes. Dr. Black explained something about why it happens but I don't really remember what he said nor did I completely comprehend it at the time. But what we did get out of it was that he does have metal in his head! He has titanium bands which are holding the bone back in place. We hadn't known that before. He said it doesn't register on any metal detectors or anything, which I thought was sad!! It would make life more interesting if it did!! Charles really appreciated that :-p Haha.

He also mentioned to them that he's had some pain/numbness/tingling in his right foot & toes but basically as soon as he said it was his right foot they didn't care... basically that it's not his brain because if it were it would be the left side of his body so it's not there area so they had no concern. If it keeps up though, I'd say he should prob go see a general doctor about it.

That's all I've got for you from the doctor's appointment (ALL, I know, right, because it was so little...)

He's doing well. They said to make sure he gets lots of Vitamin C and he takes about 3 walks a day. Last I knew he was going to try to go out for a little walk before it starts raining again :)

Let me know if you have any questions, right now my brain can't think of what else to say and it's almost time to have lunch with Osh! I've missed my Osh Wednesdays at work :) Though I haven't missed the "at work" part.... ;)

Thanks everyone!!!

~Sue W.

In Recovery

*BIG DEEP BREATH*

Charles is out of surgery and in recovery. The recovery and neuro-ICU are the same so he's still very much asleep. They just gave him some morphine for pain.

AHHH I can't type worth a crap!

Dr. Black came in and said he was doing great, the surgery went really well no major complications. The only thing is that they were NOT able to remove all of the tumor :( There was some that had wrapped around the optic nerve and if they had tried getting any more of the tumor out he could have lost his vision in his right eye. So the plan is to keep an eye on the tumor, make sure it doesn't grow or cause any more problems. If it does become a problem then he will need radiation (stereotactic radiosurgery/GammaKnife, etc) to kill the tumor cells.

OK I'm sorry I'm still all worried about all the negatives and I'm not WAHOO HE'S OK! I'm crappy :( TOO MUCH STRESS. But, WAHOO, HE'S OK! He knew who we were, he can see, etc. His brain functions seem fine. He's still normal Charles, the first thing he said when we saw him was "where's my bacon from Abby??" Thankfully it wasn't wanting to know where Kirby was because in the mad dash to go see him I forgot to grab his plastic Kirby representation that we stuffed in a zip lock (the mason jar opening was too small to fit Kirby AND his frying pan through).

Once I calm down more and he's more alive I'll be happier. Probably once he's conscious enough to make me smile all the time like normal! :)

I'm just stuck on the fact that while I know it's never over, I was REALLY hoping they would get 100% of the tumor, and the 3 neurosurgeons that looked at his MRIs all said it WASN'T wrapped around the optic nerve so I think that JUST happened recently- having to do with the fact that his vision started getting foggy a couple weeks ago. The fog is still there, but I dont think any worse than it was. BUT he's not blind in that eye so that's awesome!! And he doesn't have any sexy black eyes either.

I'm just not looking forward to when he's fully conscious and finds out that they shaved off one of his sideburns!! Ooooh that's not gonna be a happy time! That might possibly be one of the things he'll be most upset about ;)

Though overall... I'm disappointed because I really wanted to be able to tell him he was ok and Kirby was gone. But... he's not 100% gone :( There's Kirby Poop on his eye nerve!!!

THINK HAPPY THOUGHTS!

HE'S ALIVE AND WELL AND WE WILL LIVE HAPPILY EVER AFTER!!!!!

And as Abby keeps reminding me trying to keep me upbeat, his (wonderfully crazy) personality hasn't changed and that's the most important thing :)

YAAAAAAAY CHARLES!!!

We'll know more about how he's feeling and everything later but for now, that's my update!

*KEEL OVER TIME*

Love, Sue W.