GK Tumor re-growth possibility?

[gcb]

First off I want to thank everyone on this forum for providing their experiences and knowledge they have on AN’s. I’ve found this site to be extremely informative and helpful. THANK YOU! I’d also like to make it clear that I understand treatment options will differ individual to individual and family to family. I'm not trying to sway anyone’s opinion or bash the Doc’s I’ve seen; I think they’ve been first class and very professional.

With that said, here goes my first post….

I'm a 38year old healthy male living in Chicago land. I was diagnosed approximately 2 months ago with a 2cm AN effecting my left side. I have approx 80% of my hearing on the affected ear; I have full facial control and VERY minor balance issues. Life with this AN is really ok; for now anyway.

I'm trying to understand treatment options at this point. Here’s where I am in my decision process.

After initial diagnosis I was referred to Dr. Leonetti of Loyola University. Dr. Leonetti went through treatment options, do nothing, radiation GK/CK or surgery. His recommendation was surgery. He said the radiation wasn’t a great option based on the fact that the tumor WILL grow again within a few years and that there’s a chance of a secondary tumor being developed b/c of the introduction of radiation. His discussion points sounded logical and made sense to me, besides,  what do I know - he’s the Doc right?
I then saw Dr. Wiet of Northwestern University for a 2nd opinion; he had the exact same diagnosis as Dr. Leonetti including the same recommendation and reasons for not doing radiation.

After reading information here and doing additional research I decided to speak with a GK doc. I saw Dr. Chandler of Northwestern University. Dr. Chandler had an interesting approach to this. He stated that he’s “general contractorâ€? of sorts, a one stop shop. He does both the surgeries and the GK procedures. I felt his approach was very open to what is best for the patient and his recommendation would be whatever he felt is the better approach. Interesting way to go about it I thought. After his examination, Dr. Chandler recommended GK. When I asked about the re-growth that Dr. Leonetti and Dr. Wiet had talked about, he indicated GK was approx 98% effective at stopping the tumors growth in studies that have followed patients for 10 years (GK has only been in the US since 1988 I believe).  He also stated that they have never seen an existing AN become malignant and that they’ve never seen a secondary tumor develop. He said it’s possible but they’ve just never seen one. Dr. Chandler said he’s treated about 200 AN’s during the 8 years he’s been with NW.

Further investigation led me to the University of Pittsburgh and Dr. Lunsford. Dr. Lunsford’s published study “Long-Term Outcomes After Radiosurgery for Acoustic Neuromasâ€? published  in The New England Journal of Medicine 339(20): 1426-1433, 1998, collaborate with Dr. Chandlers opinion and contradict Dr. Leonetti and Dr. Wiet.

I’ve called Dr. Leonetti’s office inquiring for more information on why Dr. Leonetti feels the tumor will resume growth, asking if there are any published studies I can read/research or if there was something special about my case which would be more likely to resume growth. I'm waiting to hear back from them at this time.

So…. At this point I'm leaning toward GK, I'm going to see Dr. Lunsford in Pitt to see what he has to say. He’s treated approximately 1200 AN’s. According to his office (I haven’t spoke with him yet) they back up the 98% growth stop and the secondary tumor statement (Guess they would since their boss did the study…).

Does anyone know of or have a documented, published study on re growth or secondary tumors post GK treatment? If so PLEASE share.

Thanks.

[Jeff]

Hello,

While I don't have specific studies to recommend, I do have some resources that you may want to watch/listen to. First is an audio recording of Dr. Rick Friedman of House Ear Institute giving a presentation regarding treatment options. It uses RealPlayer. Here is the link: http://www.virtualtrials.com/video3.cfm?clipid=113

The second is a video presentation by Dr. Kondziolka of the University of Pittsburgh regarding GK treatment. Here is the link: http://www.neurosurgery.pitt.edu/imageguided/acoustic_neuroma.html

These are best viewed using a high speed internet connection. The  presentation by Dr. Kondziolka is pretty long (45 minutes if I remember correctly.)

Best wishes with your decision.

Jeff

[jamie]

Gamma knife has been around since the 1960's, and has been improved since. Regrowth is an equal possibility with both treatments, as for the misinformation you were given by the neurosurgeons, it is quite common as they see more and more patients embracing technology, they see their incomes decreasing. There is a thread on this board in the radiosurgery section you should read:
http://anausa.org/forum/index.php?topic=342.0

As for studies on radiation induced cancer, here's a few:
"The overall rate of brain cancer in AN patients who have been treated by radiosurgery has not been any higher than for neurosurgery patients.  Since statistics do not show a correlation between radiosurgery and increased malignancy when compared to patients who had surgery, it must be assumed that radiosurgery is not the cause. 

When malignancy is discovered in any post-treatment AN patient, there are therefore two possible causes: either the tumor was misdiagnosed from the beginning and was not an AN, or this is a case of a different tumor that happens to affect the same patient in the same area as the AN, rather than a "result" of the AN treatment. 

(From Dr. Lawrence Kleinberg at John Hopkins)
All the current evidence indicates this is rare after surgery and at least almost as rare after radiosurgery.

Here is a quote from Bruce Pollock, M.D., et al. in their comparison study between microsurgery and radiosurgery (Neurosurgery, Vol. 36, No. 1, Jan. 1995, p. 221):

The concerns that stereotactic radiosurgery may lead to the development of delayed radiation-induced neoplasms remain unsubstantiated; an increased incidence of new neoplasm development has not been reported despite more than 26 years of experience and the treatment of more than 20,000 patients worldwide.
["neoplasm" = "A new growth of tissue serving no physiological function: tumor."]

Dr. Lederman at Staten Island University Hospital, one of the leading practitioners of fractionated stereotactic radiation for ANs, was also asked about this.

(11/03) At Dr Gil Lederman's lecture on Sunday in Yarm (Cleveland, England) the question was asked about the possibility of malignancy as a result of having radiosurgery. Dr. Lederman told the meeting that there are now figures accepted in the medical profession as a whole (based on world wide experience) which give an actual occurance of one case in 33,000 treatments!"
http://www.anarchive.org/malignancy.htm

How many patients out of 33,000 who underwent microsurgery died on the operating table? At the rate of 1% mortality usually given by surgeons, that would be 330 patients.

www.anarchive.org is a great site for info on both treatments, it leans more in favor of radiosurgery, but it makes the reasons why clear, that site is full of information, so much that I haven't even finished reading it.
 

[jamie]

Also from anarchive, there are a list of myths, here's two pertaining to what you were told that the tumor WILL grow again after radiosurgery:

"The cure myth: Surgery is the only known cure for an acoustic tumor.
Radiosurgerical treatments of AN have as much right to be called "a cure" as surgery.  Just think about it logically... Suppose someone has cancer, and they have radiotherapy, which kills the remaining cancer cells in the body. After this, the cancer never comes back. Can we say they are not cured, just because those cells were killed with radiation, rather than removed with surgery? I am sure you'd say they are cured!

So why is it any different for ANs? Why would killing the tumor cells, so they never grow again, and so the patient goes on to a normal life, not be considered a cure?

The removal myth:  tumors needs to be removed.
For benign tumors such as ANs, the fact that the tumor is not actually removed does not matter at all, as long as it is not growing - that's what differentiates them from malignant tumors.  It does not spread to other parts of the body or emit toxins. It can stay there without damaging us if it were not to grow.

We also were not at all troubled by letting that "thing be in there." A prominent research oncologist friend told us that he could think of no problems at all leaving it there.

The "gone" myth:  with surgery, you know that the tumor will be gone.
This is not guaranteed. Often, the surgeon is forced to leave behind parts of the tumor to avoid servious complications, trading off the current risk of surgical damage for the future risk of regrowth. Even total tumor removals have a 2-3% chance of regrowing, but for partial (incomplete) removals, chances are much higher, at 25-50%."

http://www.anarchive.org/myths.htm

[Mark]

GCB,

In my opinion, your post outlining your AN journey to date should be required reading for every newly diagnosed AN patient. It really is all about taking control of your own healthcare and not assuming the first surgeon you discuss your situation with is the medical "voice of God". Your experience is a great reinforcement of the post I copied from the Cyberknife support group board earlier in the week where another surgeon also gave an AN patient misleading information on treatment options. Whether it was the result of ignorance ( which is hard to beleive at that level of physcian) or deliberate unethical behavior, is difficult to ever know. The point is, the AN patient needs to drill into and challenge that what they are told is an actual fact. Whether at the end of the process one elects surgery or radiosurgery, I think all anyone wants is to have all the cards honestly and accurately put on the table for consideration.

As an aside, my scenario matches up pretty closely with yours ( 2cm , Rt side , 90% SRT hearing, no facial nerve or balance issues). Let me know if you would like to compare research notes

Good luck

Mark

[gcb]

Folks, Thank You so much for reading and responding. I REALLY appreciate it. This forum has really proved to be a great resource!

Jeff, that’s for the video clips.

Jamie, that’s the kind of data I’ve been looking for. Thank You!

Mark, I read your post from cyber support last week, that’s the post the prompted me to post. I can’t agree more with your statement about having all the cards on the table. Have you personally determined what procedure fits best for you?

[Mark]

GCB,

Actually, I'm coming up on 4 years post Cyberknife treatment at Stanford with positive results to date.

Mark

[gcb]

Mark, did you have any  post procedure side effects? What were the main reasons u chose CK vs GK?

[russ]

Hi gcb!
  Considering the facility and Dr, I feel you are "leaning the right direction". GK is considered 'surgery' and FSR, 'therapy'.
  Long term outcomes of GK vs. microsurgery are fairly near equal at expert treating centers.
  One thing, stay open minded, however, if still deciding; Esp. when reading the anarchive. It does have a radiation bias and has stories to scare a potential surgical pt. Generally, info there is good, however.
  Russ

[jamie]

Russ, the cyberknife is considered 'surgery' like the gamma knife, however because there is no headframe, it can be divided, usually into three days for AN's and other cranial nerve schwannomas, but can also be given all at once like GK. The control rates between cyberknife and gamma knife are the same, however there is belief, and so far the evidence points to "fractionating" it into three days allows the nerves to recover between treatments, resulting in less nerve damage. Also the cyberknife is said to be a bit more accurate, at the expense of additional x-ray exposure due to ceiling mounted x-rays that monitor the position of your skull during treatment. They say the amount of additional x-ray exposure is minor and equivalent to a CT scan or two. It's really amazing technology, I am actually looking forward to my cyberknife treatment scheduled for the end of this month, it will be good to hopefully get this thing behind me and move on.

Mark, just curious, has your tumor reduced in size or stayed the same? They say as time goes by, the majority shrink. 

[Mark]

Mark, did you have any post procedure side effects? What were the main reasons u chose CK vs GK?

GCB,

My actual treatments were fairly uneventful and the weekend after I was actually back doing my running and biking workouts. About 2 weeks after treatment and for a period of 4 weeks I experienced  what I unscientifically called the "fuzzies". Once or sometimes twice a day I would have very short ( 30 seconds to a minute) episodes of vertigo. Nothing that really interfered with your day, but noticeable. Towards the end of that period I had a very significant episode of vertigo which included double vision and lasted 3-4 hours. I called my neurosurgeon who prescribed steroids for two weeks. The vertigo subsided before I picked up the medicine but I took them for a few days just to be safe and then stopped. No other post treatment reactions occurred although symptoms related to nerve inflammaton can occur at anytime during the firt 18 months following the treatment.

I chose CK over GK for several reasons:

1) Availbility of an FSR protocol to save the high level of hearing I had before treatment. One shot GK has lower probabilty of saving hearing although it is better than surgery in mid size tumors.
2) equivalent ( subsequently proven better) accuracy to GK which most FSR capable machines sacrifice somewhat
3) Did not require a head frame being screwed into my head


Mark

[Mark]

Jamie,

My AN shrunk noticeably at the first 6 month MRI, about 20% by volume from around 2 cm to the 1.6-1.7 range. It went through the typical bright-dark-bright transition indicating necrosis and then scarring over. The following two years  it stayed unchanged. At the 3 year check up it had shrunk about another 1 mm or so, but was essentially unchanged. That is the more common result than having dramatic and ongoing shrinkage although that can occur on occasion. As Dr Chang told me the goal is to kill the AN not create a "perfect MRI". Do I wish it would just continue to shrink and disappear? Sure. But the reality is the "fibrous carcass" will probably always show up in the MRI which is fine.

Mark

[jamie]

Yeah, I'll be perfectly happy if mine just stops growing, but if it shrinks that'll be a bonus. It shouldn't swell because it's already necrotic in the middle, Dr. Kresl says it's probably due to a poor blood supply. Hopefully, the cyberknife will finish the job. I'm not sure what if any side effects I may have, I'm told probably none that I'll notice because my schwannma isn't accoustic, it's lower so I shouldn't get the dizziness or possible hearing loss. Possibly some swallowing difficulties or voice hoarseness, but probably not anything noticeable to me. I'm just glad there's an alternative to brain surgery, I can't for the life of me figure out why anybody would choose that option for a tumor that can be treated with radiosurgery. Sure, the tumor may remain, but there's alot of other junk in there anyway, and the tumor's made of the same cells that surround the nerves, so it won't bother me in the least. I would rather have the scar tissue left by the dead tumor carcass than fat from somewhere else in my body, that would be more weird to me. Who knows, as medicine advances, maybe there will one day be a pill or something we can take that will dissolve what's left. It could happen. Thanks for the response.   

[GM]

Jamie,

The reason some people elect surgery is that they want this "thing" out of their heads.  Also they may be suffering substantial side issues (migraines, vertigo, even passing out!).  If the tumor is pressing on the brain stem and is causing life threatening issues...then it's surgery time...period.  Also, don't forget some people are limited as to what their insurance will cover.

I too am a Gamma Knife patient.  My tumor was originally measured as 1.8 cm and after treatment in Nov of 2003 it swelled slightly to 2.0 cm.  Since my MRI in April of this year (I've had an MRI every 6 mo), it's holding steady at 2.0 cm...and it is showing signs of darkening in the center. 

Ironically I was a happy camper pressing along in life until two weeks ago when I had a reality check of ...HEY this things is still in here and can still cause issues.  I woke up and couldn’t hear at all out of my left ear.  It felt full, clogged, garbled sound, and increased tinnitus.  Wow..I wasn't prepared for that.  I even had measurable word recognition and hearing loss as a hearing and word recognition test was performed.  Fortunately, I was aware of some paths to follow from other posters from another site I belong to...a poster named Russ.  He had mentioned steroids and I ran it past the doc.  Well the clogging has subsided, word recognition and hearing level are almost back to what they were before the clogging incident.  The tinnitus still has increased levels at times, my hope is that it too shall pass as my steroid intake level decreases.

What I'm trying to say here is that those who chose surgery did so because they felt that that was the best possible solution for them, some still suffer side issues.  Until recently I thought I'd be side issue free...I awoke with a new appreciation for the hearing I have every day.  I got to live in a surgery patients world for a day or too with the clogged ear and noise bombardment from a single ear.  It can be overwhelming. 

Gary

[jamie]

Gary, I didn't mean to imply that those who elect surgery make the wrong choice, it's their heads. I just don't understand why folks with small to medium tumors that are causing minimal symptoms make that choice. But that's just me. I know that a large tumor, or one pressing on the brainstem or causing severe headaches needs to come out, in those cases there's no choice. But in cases where there is a choice, I don't see why one would elect to have a hole cut in their head just to get the "thing" out. The "thing" was not put in by aliens, it will not burrow out after it hatches or anything. They're just schwann cells that cover nerves, and if they can be stopped from growing, they will cause no more problems. I'm sure you were told that the swelling you experienced was due to the fact the tumor is dying inside, and once the middle is necrotic it will probably shrink back down to baseline and probably smaller. But the fact is, steroids were able to relieve your symptoms and they should subside even more over time, for most of the side effects I've read about after surgery (deafness, white noise, severe vertigo, headaches, cognitive problems, etc.) there does not appear to be any relief other than "learning to live with it". Side effects from radiosurgery are usually transient if at all, from all the patients I've been in contact with. I can  fully understand the "get this thing out of me" feeling, I had it when I first found out, but after alot of researching and reading patient stories, it seems overwhelmingly obvious the symptoms caused by surgery pale the symptoms of the tumor itself. Now my feeling is "stop this thing from growing, but please don't open my skull". Personally I feel many are too trusting of the first neurosurgeon they see, and don't bother checking the real facts about radiosurgery. Even the House website posts misinformation about radiosurgery, and from as many good things as people say about them, I was disappointed to see them go to that level. They should be able to make money off the fact that they are so skilled, but I guess even they know that if everybody who had a choice was fully aware of the options and the facts, they wouldn't let even the most skilled surgeon cut them. Oh well, these are just my personal opinions and they amount to a hill of beans to anybody but myself. But future medicine is at our doorstep, and soon surgery will be a rarity, eventually it will be history. Surgeons know this, and need to make paying for all those years in school worthwhile. That's just my perspective, like you said, people will choose what's right for them, just as long as they are well informed and FULLY aware of all the facts, not outright lies. Informed consent seems to be thrown out the window in a lot of cases, in my opinion. But I'm rambling now, sorry.