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

[Mark]

Hi all,

as a follow up to my post yesterday where I pasted an exchange from the Cyberknife board, the patient involved had some specific comeback questions which Dr. Medberry responded to. Whereas the post yesterday focused on the misleading information some surgeons will give to patients, this one addresses some of the more common questions for those considering radiosurgery.

Hope this is helpful

Mark

------------------------------

PATIENT

Just a couple of clarification questions:

1) Is age a consideration when choosing treatment option? I know the surgery has a longer "history" so there's likely better longitudinal data on long-term results.

2) What are the rates of hearing preservation in surgery vs GK vs CK?

3) I saw a study from Stanford in which a significant number of tumors stayed the same size following CK. Is the goal of the CK to reduce or stunt the growth of the tumor? How often do they "die" or "shrink"?

I want to get this entire episode behind me and to maintain my hearing/minimize my side effects.


-----------------------------

Dr. Medberry


1) Yes, but usually in terms of being more willing to wait it out on slow-growing tumors in elderly patients. Actually, age is always a consideration, but not usually a significant factor in deciding between treatment options. If anything, younger age would argue in favor of the treatment least likely to produce significant long-term complications/side-effects, since the younger patient has longer to endure them.

2) With surgery, hearing preservation rates vary according to the procedure. In all cases, chance of preserving serviceable hearing is low to non-existent. THe situation is less clear with the two radiosurgical options. THere is fragmentary data suggesting that rates of preservation may be about 65% with CK and about 50% with GK, but whether there is a real difference is, in my view, unknown. There are a number of factors that make the subject difficult to interpret. Biologically, one might expect fractionated treatment to be better at preserving normal structures. We are hoping to start a randomized trial.

3) Much of what is seen on images of AN's is not viable tumor cells, and the fibrous stuff stays after treatment in most cases. We generally see slight to moderate shrinkage over months. However, the goal is to kill off tumor cells and prevent further growth, not to produce a normal MRI. Radiosurgery is 98% effective in that regard.

In summary, I think that there are few centers that have radiosurgery available who will now recommend surgery except in very large tumors. There is not sufficient data to allow indisuputable recommendation of CK over GK or vice versa. CK allows fractionated treatment and avoids frame placement.

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org or cmedbery@coxinet.net

Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave.
Oklahoma City, OK 73102

[GM]

Maer,

I'm interested to see the originating site forthis info.  Can you post the kink?

Gary

[Mark]

Gary,

you bet, it is www.cyberknifesupport.org

click on message boards , go to the doctor section

Mark

[russ]

   Just that a patient might remember...

   "Disclaimer ( from the cyberknife group )
This is a nonprofit site which does not profess to have any medical expertise, however, we have asked doctors to periodically monitor the message board to answer questions regarding CyberKnife treatment. CPSG claims no liability for nor endorses any medical opinions or advice given by doctors on this site.  Doctors participating on the message boards are all volunteers and are not financially compensated in any way.The CyberKnife Patient Support Group, established July 2001, reserves all rights to this web site. CyberKnife® is a registered trademark of Accuray, Inc.

   Russ
 

[Mark]

Russ,

Thanks for posting the CPSG disclaimer to go along with posts I copied from that board. It's an unfortunate necessity in today's world. When one talks about treatment options and potential outcomes for an AN there can be only probabilities based on academic studies and physcian experiences to date. There are no guarantees one way or another. Each one us "rolls the dice" and hopes for the best

Mark

[jamie]

Indeed, those who maintain the site itself do not have any medical expertise, but the doctors that respond to the patient inquiries certainly do. I think the doctors on that board go above and beyond to answer our questions quickly, and they don't even get paid for their time. Moreover, a couple of doctors on that board practice both radiosurgery AND microsurgery, and in my opinion are the least biased, like Dr. Steven Chang and Dr. William Rosenberg, who on the very thread Mark has quoted, fully agreed with Dr. Medbery about the dishonesty and desperation of alot of surgeons, who stand to lose money to technology, using scare tactics:

Dr. Chang wrote:

"In my experience, I have found the the some MDs are using these scare tactics since more and more patients are choosing to go with radiosurgery, and thus they feel they have to resort to scare tactics to try and prevent even more of their patients from disappearing. However, most patients can see right through these scare tactics, and come away feeling that the doctors employing these methods are less than honest.

I agree with everything that Dr. Medbery states above in terms of statistics.

Steven Chang, MD
Stanford, CA
650-723-5573"

And Dr. Rosenberg wrote:
"I feel obligated to add my two cents, since I am equally outraged by this nonsense. I trained at one of the centers of acoustic neuroma surgery (Massachusetts General Hospital in Boston) where, for years, radiosurgery was considered the wrong choice. Even THEY have come around to radiosurgery for AN. The only thing "unethical" here is the ENT you saw.

William S. Rosenberg, MD
Medical Director, Menorah Medical Center CyberKnife
Midwest Neurosurgery Associates
6420 Prospect Street, Suite T411
Kansas City, MO 64132
(816) 363-2500
wsr@post.harvard.edu"

http://www.cyberknifesupport.org/forum/default.aspx?f=16&m=2683

As technology and medicine advances, there will be less and less need to open people up, surgery will become a rarity and I think many surgeons see this on the horizon and need to "get while the gettin's good", and that's fine for those who do not wish to embrace technology, or for those who are not candidates for treatment with new technology, but as for me, I'm all for taking 90 minutes out of my day at work for 3 days, walking right next door to the CyberKnife, and walking back to work. That opposed to getting put to sleep with no guarantee of even waking up, coming around in pain to remember I just had my skull opened, staying in the hospital for several days, enduring whatever nerve damage likely occured while my brain was retracted, and then recovering however long that takes while only getting paid 60% of my wages while on medical leave. No thanks, I'd rather give the robot a chance, and the chances are good. If I'm in the minority for whom it doesn't work, then I'll resort to surgery, but if there's a chance to avoid it, I'm there.

[cterrell]

This is my first time on this website.  I had Fractionated Stereotactic Radiosurgery at Johns Hopkins Hosp. in April of this year.  I was told that the dizziness would get worse for a time, due to inflammation, etc..  Now, after almost 4 months, I am still quite dizzy and get nauseated easily, in spite of Vestibular Rehab..  I am unable to read, or drive.  In fact, I am very limited in what I can do.  I also have noise and light sensitivity.  I do not go back to Johns Hopkins until the 6 month mark (November), but in the meantime I will see my doctor at Mayo Clinic next week to see if he has any helpful suggestions.  I so badly just want to feel normal.  My hearing on the tumor side comes and goes.

CTerrell

[GM]

CTerrel,

It sounds like you need to make an early follow up appointment with the ENT doc...maybe they can put you on a steroid treatment.  They also can do another hearing/speech recognition test to see where you are currently at...      Fear not, as this too my friend shall pass   and you'll be on the road to recovery.   I still deal with tinnitus, and once in a while some ear clogging. 

The good news is that your on the road to recovery!  Every patient is different on how they react to the radiation.  For me (Gamma Knife), I was just tired for a few days.  My tumor swelled from
1.8 to 2.0 cm.  I really didn't have any new symptoms from the swelling. 

Your still very early in your recovery stage, did you have a large tumor? 

Gary

Gary

[Larry]

I am in Sydney and have a recurrence of an AN that was removed 3 years ago. I am considering Stereotactic radiation instead of surgery but am reading about dizziness and nausea. As i am self employed I can't afford to be off work for too long. When i had my AN removed, i was off work for 1 month. I'd like to hear about the different experiences that people have had with FSR.

Larry

[Mark]

Larry,

I have my experience posted over on the Cyberknife patient support board under "Mark's acoustic Neuroma". The link is www.cyberknifesupport.org.  Dizziness and nausea can certainly occur following radiosurgery, but is not common based on all the CK patients that I have interacted with the last few years. That being said, there have certainly been individuals who have had more severe reactions. In my case, I never had any nausea and only one significant vertigo spell about 8 weeks after treatment that lasted 2-3 hours.


Mark

[Jeff]

As technology and medicine advances, there will be less and less need to open people up, surgery will become a rarity and I think many surgeons see this on the horizon and need to "get while the gettin's good", and that's fine for those who do not wish to embrace technology, or for those who are not candidates for treatment with new technology, but as for me, I'm all for taking 90 minutes out of my day at work for 3 days, walking right next door to the CyberKnife, and walking back to work. That opposed to getting put to sleep with no guarantee of even waking up, coming around in pain to remember I just had my skull opened, staying in the hospital for several days, enduring whatever nerve damage likely occured while my brain was retracted, and then recovering however long that takes while only getting paid 60% of my wages while on medical leave. No thanks, I'd rather give the robot a chance, and the chances are good. If I'm in the minority for whom it doesn't work, then I'll resort to surgery, but if there's a chance to avoid it, I'm there.

Jamie,

While I appreciate your position (and I followed your links to the CK Support website), I would question some of your statements in both forums. You posted statements from the House Ear Clinic website, characterizing them as "scare tactics." These are the opiions of some of the most experienced doctors in the world in terms of treating acoustic tumors. They have clearly cited their position with clinical studies. Which studies have they misinterpreted or misquoted to support their own agenda? Do you truly believe that they are acting out of fear for their livelihood - that technology will soon replace the need for their skills and experience? I liken your characterization to this statement (which I use for illustration only - this is certainly not my opinion): Doctors who advocate radiosurgery are doing it to help pay for the very expensive machines their hospitals have purchased for them. They see the latest delivery technique GK, CK Proton, Novalis, Peacock..whatever, like I see the new Nano Ipod. "Hey let's try this new technology and see what it does."

I think in the vast majority of cases, doctors tell you what, in their experience and research, they truly believe. Just as other professionals disagree, I believe doctors do. This does not make them unethical. Not giving an honest opinion is unethical.

I have a fairly extensive family experience with both treatent methods (My father, brother, and I have NF2), and have felt and seen the effects caused by both. Regrowth, both after surgery and radiation, facial nerve damage, and deafness have become part of my families life. I encourage you to consider your characterizations carefully before posting them. I mean no offense. Please accept my apology if I have offended you.

Sincerely,

Jeff

[jamie]

While I appreciate your position (and I followed your links to the CK Support website), I would question some of your statements in both forums. You posted statements from the House Ear Clinic website, characterizing them as "scare tactics." These are the opiions of some of the most experienced doctors in the world in terms of treating acoustic tumors. They have clearly cited their position with clinical studies. Which studies have they misinterpreted or misquoted to support their own agenda?

They provided no clinical studies on acoustic neuromas, quite the contrary, they stated only opinions based on long term results of pituitary adenomas, a completely different kind of tumor made of secretory cells from the anterior lobe of the pituitary, not schwann cells of nerve sheaths, so to compare those results to AN's, while not stating results of actual acoustic neuromas, which have been treated with gamma knife as long as pituitary adenomas I believe is entirely misleading. Why would they not report the long term results available for AN's, while reporting results of a biologically unequivalent tumors when long term studies are available for both? Because the AN control rate is much higher than pituitary adenomas. They may be highly experienced surgeons, but they have no business reporting on radiosurgery since they do not practice it. They also use the completely unfounded scare tactic of future malignancies or malignant transformation following radiosurgery, the studies they cited for that......non-stereotactic radiation administered to apes. Funny, there have been VERY few cases of malignant transformation following radiosurgery, and an equal amount of malignant transformation following surgery. And there also have been no reported cases of new malignancies forming due to radiosurgery, despite 30 years in use. And they supplied no evidence, other than speculation based on non-stereotactic radiation applied to healthy tissue of apes. But you're right, they didn't misinterpret or misquote any studies, because they didn't provide any, just misinformed speculation to support their agenda. 

Do you truly believe that they are acting out of fear for their livelihood - that technology will soon replace the need for their skills and experience?

Absolutely. Do you truly believe they are in their profession strictly to help people? Try scheduling a surgery through House without insurance. And I believe technology will replace the need for surgery, as I've stated.

I liken your characterization to this statement (which I use for illustration only - this is certainly not my opinion): Doctors who advocate radiosurgery are doing it to help pay for the very expensive machines their hospitals have purchased for them. They see the latest delivery technique GK, CK Proton, Novalis, Peacock..whatever, like I see the new Nano Ipod. "Hey let's try this new technology and see what it does."

If that's how somebody felt, they would be entitled to that opinion. However GK is far from "new technology", and the newer forms of that technology have the same effect as GK, the radiaition effects the tissue the same way. Radiation has been used in medicine since the early 1900's, so the "new technology" argument holds no water.

I think in the vast majority of cases, doctors tell you what, in their experience and research, they truly believe. Just as other professionals disagree, I believe doctors do. This does not make them unethical. Not giving an honest opinion is unethical.

No, in the field of medicine, a doctor's opinion must be based on hard fact, not speculation or myths, otherwise it's not honest, and not ethical. 

I have a fairly extensive family experience with both treatent methods (My father, brother, and I have NF2), and have felt and seen the effects caused by both. Regrowth, both after surgery and radiation, facial nerve damage, and deafness have become part of my families life. I encourage you to consider your characterizations carefully before posting them. I mean no offense. Please accept my apology if I have offended you.

NF2 is a much more complicated genetic issue than those of us with spontaneous tumors, in which regrowth after either treatment form is more likely than in spontaneous tumors. You're experience, while duly noted, does not apply to those of us with spontaneous tumors. My opinions are just that, but I stand by them firmly. I am not a doctor, but I work with many as part of the healthcare industry, and aside from a few noble exceptions, most are in it for the money, including radiation oncologists. However, I have not seen any cases of radiation oncologists using unfounded myths or irrelevant studies to deter patients from surgery. I take no offense, and assure you my characterizations have been fully considered before posting. If you have some studies you can provide that support what the House site claims, please provide them, because they certainly didn't. I enjoy debate and would love to compare studies. 

[Jeff]

Jamie,

You make some great points. I appreciate your candor. I certainly understand that NF2 is a very different situation, with a totally different outlook and goals for quality of life, as compared to unilateral patients. I did not mean to imply that my family's experiences were indicicative of anything. I was only trying to clarify how my views have been shaped. I do think (be it naive or not) that the House doctors I have dealt with are truly passionate in their wish to help patients. I have seen them waive their fees to help at least one acquaintance of mine. They have pioneered a technology called the auditory brainstem implant (ABI) to help NF2 patients to have some sense of sound after they lose normal hearing. Most recently, they are testing the Penetrating Auditory Brainstem Implant (PABI) http://www.hei.org/news/pabi/pabipresskit.htm . I am hopeful that I may join this linical trial when I need surgery again. Without question, implanting these devices is not a financially beneficial proposition for them. They do it to help those of us who have NF2.

You have obviously selected your course of action based upon your understanding of the facts, and I think that is great. The one thing I have learned through my experiences is that we all have to choose the course that we can be happy with. I wish you the best.

Jeff

[wanderer]

Well,   I had my tumor removed in St. Louis, not House.   I had complications not related to to the AN (I have had a reaction to the bone cement)   While researching what could be done,  I spoke to a doctor at house for over an hour on the phone regarding my situation.   They were helpful but said that it would be best if doctor Brackman spoke with me.   Doctor Brackman then called me and offered to call my doctor (when he found out who my doctor was he said it was unnecessary as he was a very experienced doctor)

If they were just in it for money, they would have attempted to get me to come to LA.  They only asked me if I was seeking to go out there.  I told them I wasn't planning on it.    This was before our conversation even started.

As for all the troubles of AN surgery.   I was out of the hospital in 2 days.  I had more problems with morophine than with the surgery.

It is a personal decision people must make.   however I do not believe that we will ever be able to do away with surgery.   

Also I see many people taking the radiation route because they fear being cut open.    I do not see this as an informed decision but rather a fear motivated decision.

I prefered to go through life knowing that my headache was just a headache and not worrying that maybe my tumor had started regrowing.   

[jamie]

I do think (be it naive or not) that the House doctors I have dealt with are truly passionate in their wish to help patients.

I'm sure they are, and I believe the same of my radiation oncologist at Barrow Neurological, another center of excellence, to me he came across as very genuine in his concern for me as a patient. However, they must get paid to keep their facilities state of the art and their practices going, not to mention making all the money they spent in school worthwhile. I didn't mean to portray the House doctors as money hungry brain butchers, but I did find their representations of radiosurgery completely speculative and based on myths, not fact. It's not just the House surgeons, it seems to be just about any surgeon who does not also practice radiosurgery, I'm sure there are a few exceptions, but not many.

I have seen them waive their fees to help at least one acquaintance of mine.

I find that pretty astonishing. They performed surgery for free? Was your acquaintance a patient before who had regrowth? I'm curious as to the circumstances, but I understand if you don't wish to elaborate.

They have pioneered a technology called the auditory brainstem implant (ABI) to help NF2 patients to have some sense of sound after they lose normal hearing. Most recently, they are testing the Penetrating Auditory Brainstem Implant (PABI) http://www.hei.org/news/pabi/pabipresskit.htm . I am hopeful that I may join this linical trial when I need surgery again. Without question, implanting these devices is not a financially beneficial proposition for them. They do it to help those of us who have NF2.

I wish you the best of luck with the trial. And again, I understand NF2 is a special situation, and I must admit I don't know alot about it except it's rare and it causes bilateral AN's. I'm also not well versed in how effective radiosurgery is for NF2. 

You have obviously selected your course of action based upon your understanding of the facts, and I think that is great. The one thing I have learned through my experiences is that we all have to choose the course that we can be happy with. I wish you the best.

Yes, I selected CyberKnife based on my understanding of the facts, also because like you, my situation is fairly unique. My schwannoma is not an AN, it's on the lower cranial nerves, and surgery is more difficult, total resection would very likely result in damage of multiple nerves. For me, surgery is a last resort. Thank you for your well wishes, and I wish you the best as well.

Well, I had my tumor removed in St. Louis, not House. I had complications not related to to the AN (I have had a reaction to the bone cement) While researching what could be done, I spoke to a doctor at house for over an hour on the phone regarding my situation. They were helpful but said that it would be best if doctor Brackman spoke with me. Doctor Brackman then called me and offered to call my doctor (when he found out who my doctor was he said it was unnecessary as he was a very experienced doctor)

If they were just in it for money, they would have attempted to get me to come to LA. They only asked me if I was seeking to go out there. I told them I wasn't planning on it. This was before our conversation even started.

I doubt they would be so rude as to say, "if you're not coming here, we won't talk to you", it's well known that House does free phone consultations, and it would damage their reputation for that to be conditional. They may also feel that even though you're not initially planning on going there, you may change your mind after the consult. It's also possible that Dr. Brackman did not want to step on your surgeons toes, so to speak, being as he knew your doctor and they may be friends or acquaintances. 

As for all the troubles of AN surgery. I was out of the hospital in 2 days. I had more problems with morophine than with the surgery.

All the troubles of brain surgery do not occur in every case. You're body was able to cope with the invasive procedure very well apparently. I never said surgery was a bad option, but we should all have all the facts before choosing an option, and no medical professional should comment to a patient about a treatment option outside his/her field. They should inform the patient of the existance of other options, and if the patient wishes to explore that option, they should be referred to a specialist in that field. 

It is a personal decision people must make. however I do not believe that we will ever be able to do away with surgery.

You don't think so? With all the studies underway now involving tumor targeting viruses and nanoshells? Technology continues to advance, I'm almost 100% sure surgery, at least for tumors, will disappear in the not so distant future.

Also I see many people taking the radiation route because they fear being cut open.

Well that's a no-brainer. It's not a natural occurance to have your head drilled into and your skull opened.

I do not see this as an informed decision but rather a fear motivated decision.

A patient can become informed, when fear motivates them to explore other options before jumping head first (no pun intended) into brain surgery.

I prefered to go through life knowing that my headache was just a headache and not worrying that maybe my tumor had started regrowing.

It would seem then you made a fear motivated decision as well, but your fear was of radiosurgery failure. I guess our decisions are based on what we fear most as individuals. However, if you were told that surgery guarantees your tumor will not regrow, I'm afraid you did not make an informed decision. There are many on this board that will tell you surgery guarantees nothing. An informed patient should be aware the tumor control rates for surgery and radiosurgery are just about the same. That's fact. There are no right or wrong choices as long as the patient is fully aware of all the facts about both procedures. I wish you the best, and I hope your tumor never grows back.