Patient - doctor exchange #2 on CPSG - general radiosurgery questions

[jamie]

No I weighed the options and decided that at 28 I did not want radiation in my head.

Wow, we're the same age. However, I see your fear of radiation the same as you see my fear of knives and drills, as emotive. Just as surgery is a part of everyday life, so is radiation. We are exposed to it everyday, even as you read this post on your computer....

What is Electromagnetic Radiation

Many of us spend much of our workday and sometimes even our leisure time in front of a computer monitor.  Electromagnetic fields (EMFs) are invisible lines of force that occur whenever electricity is being conducted, whether from a natural source such as the sun, lightning bolts, or atmospheric and solar disturbances, or a man-made source such as electric lighting, microwaves, televisions, or computers.  Computer monitors generally emit an extremely low frequency field, called ELF, and they also give off energy in the form of static electric fields and high-pitched sounds
http://www.slais.ubc.ca/courses/libr500/02-03-wt1/www/A_Davis/radiation.htm

   
(I have a second spot inside my head that has not changed but would not be operable if it were to become invasive,  I don't want to provoke it in any way)

That's an understandable factor in your personal decision making process. Did they say what they think it may be?

EDIT: to add that unless the second spot is very near (within millimeters) the location of the AN, I don't think there should be any radiation provoking it, perhaps you are confusing radiosurgery with x-ray therapy?

Also AN's do not respond as well to radiation as cancerous tumors which was a factor in my decision.

Where did you recieve that information? Please share any actual studies you may have supporting such a statement, I'll start by sharing one provided by the New England Journal of Medicine....

Background Stereotactic radiosurgery is the principal alternative to microsurgical resection for acoustic neuromas (vestibular schwannomas). The goals of radiosurgery are the long-term prevention of tumor growth, maintenance of neurologic function, and prevention of new neurologic deficits. Although acceptable short-term outcomes have been reported, long-term outcomes have not been well documented.

Methods We evaluated 162 consecutive patients who underwent radiosurgery for acoustic neuromas between 1987 and 1992 by means of serial imaging tests, clinical evaluations, and a survey between 5 and 10 years after the procedure. The average dose of radiation to the tumor margin was 16 Gy, and the mean transverse diameter of the tumor was 22 mm (range, 8 to 39). Resection had been performed previously in 42 patients (26 percent); in 13 patients the tumor represented a recurrence of disease after a previous total resection. Facial function was normal in 76 percent of the patients before radiosurgery, and 20 percent had useful hearing.

Results The rate of tumor control (with no resection required) was 98 percent. One hundred tumors (62 percent) became smaller, 53 (33 percent) remained unchanged in size, and 9 (6 percent) became slightly larger. Resection was performed in four patients (2 percent) within four years after radiosurgery. Normal facial function was preserved in 79 percent of the patients after five years (House–Brackmann grade 1), and normal trigeminal function was preserved in 73 percent. Fifty-one percent of the patients had no change in hearing ability. No new neurologic deficits appeared more than 28 months after radiosurgery. An outcomes questionnaire was returned by 115 patients (77 percent of the 149 patients still living). Fifty-four of these patients (47 percent) were employed at the time of radiosurgery, and 37 (69 percent) remained so. Radiosurgery was believed to have been successful by all 30 patients who had undergone surgery previously and by 81 (95 percent) of the 85 who had not. Thirty-six of the 115 patients (31 percent) described at least one complication, which resolved in 56 percent of those cases.

Conclusions Radiosurgery can provide long-term control of acoustic neuromas while preserving neurologic function.
http://content.nejm.org/cgi/content/short/339/20/1426

     

Additionally   delayed onset of symptoms from radiation were troubling to me.  I wanted to take action.  I wanted to have the tumor removed.   Since I had Translab for my large AN  there is a very small percentage chance of reoccurance but it can never be ruled out.

So your personal choice was based on the fact that you wanted it out of your head immediately. That is one of the most valid reasons for a patient to make the decison to have surgery, in my opinion. Also, what delayed symptoms from radiation were troubling to you?

With radiation the tumor is not gone.  It is still there it will always have to be monitored to be safe.   My tumor is gone,  and while I will have checks throughout my life to make sure it does not regrow  I would not have the same confidence with radiation.

I'm not bothered at all by the fact that my own schwann cells will remain in my head, there are schwann cells surrounding all of our nerves. As long as their growth is stopped, I'm happy. When radiosurgery fails, it almost always occurs within the first three to five years, after that the tumor becomes a fibrous carcass, and other than wild speculation and unfounded fear, there is no biological reason to believe the dead scar tissue will suddenly transform back to living tissue. We are both advised to have MRI's throughout our lives, after five years in either case, it's probably more for the sake of study than regrowth.

Another study in regards to radiosurgery and long-term outcomes....

Patient Characteristics: University of Pittsburgh
Eight hundred and twenty-seven patients underwent stereotactic radiosurgery for an acoustic tumor (vestibular schwanoma) at the University of Pittsburgh over a 15-year interval. These included 765 patients with solitary tumors and 62 with NF-2. Fifty percent of tumors were left-sided and fifty percent were right-sided. Fifty percent of patients were female. The patient age range was 12 to 95 years (mean, 56 years).

A resection had been performed in 165 patients (20%). Twenty-nine patients had 2 prior resections, eight patients had 3 resections and four patients had four resections. Most patients had normal facial function (House-Brackmann grade 1)(12). The Gardner/Robertson scale was used to code hearing function (13). "Useful" hearing before radiosurgery was noted by 33% of patients.

In our last review of 45 patients with NF-2, prior resection was performed in 13 (16). Multiple resections were performed in four patients. Normal facial function before radiosurgery was present in 74%, normal trigeminal function in 75%, and useful hearing (Gardner/Robertson grades 1+2) in 31%.

Technique of Gamma Knife Radiosurgery
All patients underwent stereotactic radiosurgery using the Gamma Knife (Elekta Instruments, Atlanta GA) supplemented with local anesthesia and intravenous sedation as necessary. Children under the age of 12 years with NF-2 had radiosurgery under general anesthesia. Radiosurgery was performed with computed tomographic (CT) imaging between 1987 and 1991. Subsequent patients underwent radiosurgery using magnetic resonance imaging (MRI) after a prospective comparison study confirmed the accuracy of MR-based stereotactic targeting (14). Multiple irradiation isocenters were used to conform the radiation margin to the intracanalicular and extracanalicular tumor components (7). The 50% isodose line was used to cover the tumor margin in 696 patients with solitary tumors (88%). An initial tumor margin dose of 18-20 Gy was selected based on the initial experience from the Karolinska group in Stockholm ( 8 ). This dose was decreased to 16-18 Gy within the first two years and by 1992 was decreased further to a margin dose of 14-16 Gy. Repeated re-evaluations of the cranial nerve response prompted additional small decreases in dose in order to preserve cranial nerve function (7,15). The mean dose delivered to the margin of both non-NF-2 and NF-2 tumors was 14 Gy, although the most common prescribed margin dose at the present time is 13 Gy, and this dose has been fairly constant for the past nine years (16,17). Dose selection in individual patients was based on the factors of tumor volume, prior surgical history, hearing status, facial motor function, and patient desires. After radiosurgery, all patients received a single 40 mg dose of intravenous methylprednisolone and were discharged from hospital the next morning.

Follow-Up Evaluations
Serial imaging studies (MRI, or CT when MRI was contraindicated) were requested every six months for the first two years, annually for the next two years, and then bi-annually. Serial audiograms were obtained at 6 - 12 month intervals in patients with hearing. Contrast-enhanced imaging studies were used to define the tumor response and to identify any peri-tumoral imaging changes. Before and after radiosurgery, each tumor was measured in five separate dimensions (three extracanalicular and two intracanalicular) using a method previously reported (1). A significant imaging change using this caliper technique was defined as a difference of + 2 mm.

The Long-term Experience
We continue to evaluate a cohort of patients managed before 1992 who are a minimum of 10 years out from their procedure (n=162). This study represented results of our initial techniques (11). The majority of irradiated acoustic tumors (approximately 70%) decreased in size over time. Nine patients had tumors that increased in size and all were identified within the first three years after radiosurgery (11). Enlargement represented either true neoplastic tumor growth (n=4) or tumor death with an expansion of the tumor margins as the central portion of the tumor became necrotic. In the latter patients (n=5) subsequent imaging studies confirmed tumor volume regression. Four patients underwent resection. No further increase in tumor volume was identified in any patient with further follow-up (15). Patients returned to their routine activities immediately. In our 5 to 10 year review, three patients developed hydrocephalus and required a ventriculoperitonal shunt (11). All new or worsened post-radiosurgery deficits occurred within 28 months of radiosurgery and no patient described a treatment related problem after the third year.

http://www.acousticneuroma.neurosurgery.pitt.edu/gammaknife.html

     

Also one of the neurosurgeons said he would be comfortable having me look into radiation.

That's good, did you then speak with a provider of radiosurgery? What were there comments in regards to the other spot and radiosurgery aggrevating it? 

Everyone deserves the best outcome and I don't think scare tactics should be used for either approach.

Agreed. But you still seem to believe a couple. And just curious, what would you consider a scare tactic that has been used to deter patients from surgery?     

As for house,  a free consult is one thing.   Spending hours on the phone with you is another.   My surgeon does not spend that much time on the phone with me.

I won't deny that's pretty cool of them. The doctors that participate on the CyberKnife support board are also very prompt in thoroughly answering all questions posed by patients all around the world.     

[Raydean]

The importance of Doctor-Patient communication is an important factor.  Don't assume that the doctor of any treatment options  "knows what is important to you".  It's easy to fall into "Doctor know's best"  especially for us baby boomers who were raised with the above belief.  You must communicate your wishes.

Take the time to sit down and explain what is important to you.  Explain to your doctor your needs, your wants , your lifestyle so there's no guess work on his /her part.

This holds true for both radiation and surgical patients.  Take the time to talk about your life,  and all of the pluses and minuses of treatment.  Open communication is an important factor.  Don't leave it to guesswork

Best to all
Raydean

[wanderer]

Sorry at one point I had lots of information.  But my surgery was in January and since then I no longer have most of the stuff I printed or even the bookmarks to sites I found interesting. 
I just got out of the hosptial yesterday from what will hopefully be my final surgery. (I had a reaction to the bone paste and it needed to be removed)  so I will take a look and see if I can't find the info about radiation effecting cancer cells more readily than non-cancerous cells.

Something else that made it easy for me to make my decision was that I had a large tumor that was pushing against the area that controls breathing.   There was concern that if the tumor was to swell I could be in for real trouble.   

Some of the things that I have now been able to attribute to my AN (i started studdering and getting very tongue tied prior to having it removed.)    I would also get overheated and pass out when working out (no doctor could figure out why i was having this problem)  since the AN being removed I have not had either of those problems.

I am not against radiation.   the spot that is in my head was listed as possible glioma,   it is in the middle of their brain.   but as my an had displaced my brain stem it was not so far away.      I decided to go with caution.

As for delayed side effects of radiation.    many times people have reported facial paralysis, loss of hearing, vertigo and the like 5 or more years after radiation treatment.    I prefered to take my consquences right up front.    I had facial paralysis for a few weeks but it's back to normal or at least close enough for me not to worry about it.  Since I had no usable hearing loss of hearing wasn't really a major concern for me.

I think everyone needs to really look at their situation and circumstances.   I box, teach martial arts and train a lot,  I felt having it removed was the correct option for me. 

I read about the tumor bombs using viruses a few months ago and I think that is really exciting, but from what I read viable use in humans is still 20 years off.

The only thing I found in my search for information was a complete condemnation for the Skull Based institute's use of endoscoping surgery for removing AN's   all of the doctors felt it was much to risky.

When the doctor I chose to do my surgery (apparently he is very well known) looked at me and said "If you were my best friend I would not recommend radiation for you" it made me look real hard at it.    I had already made the decision for surgical removal before I saw the surgeon anyway it just confirmed it when the other doctors chose the same approach with similar time lines and such.

When one doctor (who was a partner at house at one time) said he felt comfortable looking at radiation I was a bit surprised.  He also felt I could wait and watch for 6 months with little risk.   (however i started getting tingling in my face a week prior to surgery (after my facial paralysis was gone I knew that it was the nerve and not just in my head.)

anyway,   I had what will hopefully be my last surgery on wednesday.   I was home yesterday,   I even went out to eat last night.   I've had my ups and downs.  It would be great if people didn't need to go through any of this in the future and who knows. 
I just don't think we will ever get to the point where we will totally be able to totally leave surgery behind.

[jamie]

I just got out of the hosptial yesterday from what will hopefully be my final surgery. (I had a reaction to the bone paste and it needed to be removed)  so I will take a look and see if I can't find the info about radiation effecting cancer cells more readily than non-cancerous cells.

I believe radiation affects cancer cells more quickly, because the cells turn over faster, but not more readily. The process is just slower with benign tumors, but still very effective.

Something else that made it easy for me to make my decision was that I had a large tumor that was pushing against the area that controls breathing.   There was concern that if the tumor was to swell I could be in for real trouble.

That's definitely a good reason. It doesn't really seem like radiation was ever really an option for you.    

I am not against radiation.   the spot that is in my head was listed as possible glioma,   it is in the middle of their brain.   but as my an had displaced my brain stem it was not so far away.      I decided to go with caution.

That is also understandable.

As for delayed side effects of radiation.    many times people have reported facial paralysis, loss of hearing, vertigo and the like 5 or more years after radiation treatment.

I've never heard of any reactions that far out, I've only heard of such issues up to two years after treatment. The study I referenced above touches on this issue. For a patient weighing their options, as far as this issue is concerned, I would think quite a few would take a smaller chance of nerve issues down the road, over a greater chance immediately. But that is only one factor of many that must be considered.     

I think everyone needs to really look at their situation and circumstances.   I box, teach martial arts and train a lot,  I felt having it removed was the correct option for me.

I am also very active, I'm a father with a four year old son, and a devoted bodybuilder. I make most of the money for my family and taking a 40% pay cut on medical leave would be very difficult. Another plus of radiosurgery for me was I didn't miss a day in the gym.  

I read about the tumor bombs using viruses a few months ago and I think that is really exciting, but from what I read viable use in humans is still 20 years off.

I don't think it's going to be that long.

Now, Delta-24-RGD is expected to start the first phase of human testing in late summer 2004, with a two-staged clinical trial of 15 patients each. One stage will offer the treatment by injection to patients with recurrent gliomas who cannot be treated with surgery. Progress will be monitored with serial diagnostic scans. In the second stage, patients with a glioma will have the therapy, followed by surgery two weeks later. The excised tumor will be examined to see if it has been damaged.

This trial is just part of an ongoing larger "platform" of research that is continually refining Delta-24-RGD therapy, says Charles Conrad, M.D., an associate professor in the Department of Neuro-Oncology who works with Fueyo, Lang and others on the "Delta team."

They have already created a second and now a third generation of the therapy, each of which is proving more adept in infecting cancer cells and disarming them. One idea is to insert genes into the viral smart bomb that will switch on chemotherapy drugs. This way, a patient could receive an inert form of a chemotherapy drug that would be non-toxic to normal cells, but would be activated by the Delta virus when it spreads in cancer cells. "We would deliver the gene that activates the chemotherapy drug only to tumor cells," says Conrad.
http://www.bio.com/realm/features.jhtml?realmId=4&cid=700007

The only thing I found in my search for information was a complete condemnation for the Skull Based institute's use of endoscoping surgery for removing AN's   all of the doctors felt it was much to risky.

Yeah, I found that as well. I was seriously considering that option, I e-mailed them and they never responded. I guess if they accidentally nick a vessel, it's over because they can't open your skull fast enough to repair it. That's what is said anyway, and they don't seem to be out there addressing that concern, so I decided against it. It was an attractive option though, minimally invasive removal with a much shorter down time. Maybe soon that method will improve and it will be a viable option.

When the doctor I chose to do my surgery (apparently he is very well known) looked at me and said "If you were my best friend I would not recommend radiation for you" it made me look real hard at it.    I had already made the decision for surgical removal before I saw the surgeon anyway it just confirmed it when the other doctors chose the same approach with similar time lines and such.

That's no surprise because he is the surgeon. Did you read my post with the survey of neurosurgeons? If not check it out, I know you've already made your decision, but it's an interesting read.

http://anausa.org/forum/index.php?topic=369.0

anyway,   I had what will hopefully be my last surgery on wednesday.   I was home yesterday,   I even went out to eat last night.   I've had my ups and downs.  It would be great if people didn't need to go through any of this in the future and who knows.

I sincerely hope this is your last one as well. It's a bummer you had that reaction to the cement. Hopefully it's fixed now.

I just don't think we will ever get to the point where we will totally be able to totally leave surgery behind.

I pretty much meant surgery for tumor removal would disappear. With the tumor viruses and nanoshells (another very promising treatment that completely dissolves tumors in days, just google it), surgery for tumors will hopefully soon be an endangered species. As far as all surgery goes, never say never, as nanotechnology improves, many scientists believe they will one day be able to create microscopic robots that will be injected into the blood and can travel to any site in the body and go to work. Like a mini construction team. Sounds like sci-fi I know, but with the rate in which technology increases, it becomes like a snowball.

Here's an article on the subject:

Robotics is already developing for applications in life sciences and medicine. Robots can be programmed to perform routine surgical procedures. Nanobiotechnology introduces another dimension in robotics leading to the development of nanorobots also referred to as nanobots. Instead of performing procedures from outside the body, nanobots will be miniaturized for introduction into the body through the vascular system or at the end of catheters into various vessels and other cavities in the human body.
A surgical nanobot, programmed by a human surgeon, could act as an autonomous on-site surgeon inside the human body. Various functions such as searching for pathology, diagnosis and removal or correction of the lesion by nanomanipulation can be performed and coordinated by an on-board computer. Such concepts, once science fiction, are now considered to be within the realm of possibility. Nanorobots will have the capability to perform precise and refined intracellular surgery which is beyond the capability of manipulations by the human hand.

Surgical nanobots are moving closer to the mainstream. With capabilities "coordinated by an on-board computer," they almost certainly will be built through some form of molecular manufacturing.

http://crnano.typepad.com/crnblog/2005/week27/

[wanderer]

I actually own a gym.   I haven't been able to do much lifting lately but I'm looking to really get back into shape.

As for SBI  I was told to look to Korea for endoscopic surgery,  apparently they are the most advanced with it.


and for my surgeons reaction to radiation for me.   It was not what he said, it was how he said it.    It also didn't hurt that it matched my assessment of my situation.

[jamie]

I actually own a gym.   I haven't been able to do much lifting lately but I'm looking to really get back into shape.

That's cool, I wish I owned a gym. But I like the gym I go to alot, the owner is really cool and it only costs me $70 a month for me and my girlfriend with unlimited tanning (which I hardly use, but she does), as well as childcare. The closest I've ever been to owning a gym was when I had a Bowflex, lol. I can't believe I ever bought that thing.  I guess it was okay for cutting up, but it was no good for gaining mass. I gotta have my free weights.

As for SBI  I was told to look to Korea for endoscopic surgery,  apparently they are the most advanced with it.

There's also a Dr. Hae Dong Jho on the east coast, I think in PA but I'm not totally sure. He's a Korean surgeon who uses that method, so you wouldn't have to travel so far. If I was ever to need surgery in the unlikely but possible event the CyberKnife doesn't work, I will probably contact him and see what he has to say. 
http://drjho.com/acoustic_neuroma_surgery.htm

and for my surgeons reaction to radiation for me.   It was not what he said, it was how he said it.    It also didn't hurt that it matched my assessment of my situation.

Yeah, for you, given that you had some brainstem compression and other factors, he was probably sincere. Unfortunately not everybody has all the options on their table.

[russ]

  Re: Radiation
   Whether the cell is malignant or benign, the radiation does not affect at that level but at the DNA cell replicating level.
  This is why NF-2 type ANs are more Tx resistant. Protein 'merlin' and 'schwannomin' are ALWAYS absent or mutated in NF-2. Since the formation of ANs is exactly the same as for a spontaneous unilateral AN and NF-2 mediated AN, radiation would have greater 'potential' effectiveness on the spontaneous, one time, unilateral AN.
  By some, NF-2 is considered a 'benign cancer' as it does metasticize ( shows up elsewhere ).
  My largest concern for radiation is the initial 'hit' is large enough to disrupt the DNA's ability to replicate more schwann cells than necessary. Seems this is most likely with GK. Each of the 201 gamma rays goes in weakly, intersect at target AN and exit at half their original weak entrance strength. So; Theoretically, there is no need for fractionalization. So; This person feels FSR and the like are producing a 'market share' for some providers with the appearance and promise of being very 'high tech'.
  Just my opinion and, of course, anyone is free to own theirs.    -Russ
  Russ 

[jamie]

It's debated whether fractionated treatments result in less chance of nerve damage, the theory is that the nerve tissue is given the opportunity to recover the night between treatments, while tumor tissue cannot. But what is very high tech, is the targeting system used by the CyberKnife. Control rates are about the same, and CyberKnife is at least equal to GK as far as error margins go, maybe more precise according to some. CyberKnife can be done in one treatment, but usually three. FSR uses five. The main choice to make between CyberKnife and GK in my opinion, is whether you want to go in for the treatment two additional days to avoid the headframe being screwed in to the skull.