ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: recharge on December 01, 2011, 07:29:16 pm
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Hi All,
Thanks for your responses for my previous posts in this forum. My 2'nd MRI shows some grown in my tumor and it measures at 1X0.5X0.5 cm and i am planning to go for the Radiation treatment.
My Hearing is 95% loss in my left ear where my tumor is on. I don't have dizziness or any other symptoms. The tumor is on IAC .
Which treatment will have best outcome in my case? GK or CK ? Based on your responses , i am planning to go to either UPMC for GK or stanford Dr Chang for CK. I am confused which one i need to go for.
Please help me out to decide on this.
Thanks in advance
Muru
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Muru .....
I did not have radiation treatment, but if I were you, I would send my most recent MRI and audiogram to both places for a free evaluation. That might help you make up your mind.
Best thoughts.
Clarice
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Hi, Muru:
In answer to your question:
CK delivers a more homogeneous dose to the tumor compared with GK. CK delivers only 15% higher dose to the center of the tumor than at the periphery, whereas GK delivers fully double (100% greater) dose at the center compared to at the periphery. CK advocates believe that GK's higher dose at the center of the tumor increases the chance of damage to nearby healthy tissue. Also, GK delivers one large dose to the tumor because one treatment is all you can do with GK (this is because a ring is fitted to your head for the treatment and, once it's removed, there's no way to get it exactly in the same place for a second treatment). With CK, on the other hand, a thermoplastic mask is custom-fitted to your head and the tumor's location (in relation to the mask and your bony structures) is plotted into the computer; on followup visits for treatment, they put the mask on your head again and you're ready for the next dose. This flexibility allows CK to apply smaller doses to the tumor than GK with each treatment; together, the smaller doses add up to the same total biologically equivalent dose as you would get with GK's one and only treatment, but (theoretically, at least) the hearing nerve and other healthy tissue has time to recover in between treatments (whereas the tumor supposedly doesn't recover as quickly). Presumably due to the fractionating of dosage, studies show CK yields slightly better results at preserving hearing compared with results for GK, but this is not a factor in your case because you already have 95% hearing loss on your AN side.
GK's ring is screwed into the head (the screws stop at the skull) to keep it stationary (so that the radiation stays focused on the tumor), a mildly invasive procedure. CK is totally non-invasive: a series of overhead X-rays tracks the patient's head movements and tells the computer-controlled CyberKnife machine which way to move to track any small movements the patient may make so that the radiation stays centered on the tumor. GK advocates say that's all well and good, but GK has about 40 years of track record, whereas CK has been around a lot less time and is not as proven of a treatment as GK. (CK was approved by the FDA in 1999, although Stanford University Medical Center has been using it since 1994 in clinical trials because their Dr. Adler invented CK.)
Both UPMC and Stanford are very highly regarded. You can probably do no better than to go to one of these fine facilities, and you are wise to make the extra effort to do so, as the outcome of your treatment will impact your quality of life going forward and both UPMC and Stanford have outstanding track records. Drs. Chang and Gibbs treated me at Stanford, and I had phenomenally good results. I cannot say enough good things about Dr. Chang. He is 100% dedicated to his patients and had treated over 700 AN patients with CK at the time I was treated 41 months ago. I imagine by now he has probably treated over 1000 patients, as he treats over 100 per year; that's around 2 AN patients per week! When it comes to brain surgery (including radiotherapy), practice makes perfect, and Dr. Chang has had a ton of practice.
Best wishes,
TW
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Hi Muru and welcome
TW has given some terrific insight into both options so I will only say this.... since your hearing is already 95% gone, either option is very viable. I guess the decision could come down to your comfort level of facility/treating teams (I have met members of both teams and VERY impressed with both), will your health coverage provide coverage for traveling/both locations and most importantly..... follow up care. Many that pursue radiation as an option tend to forget about who will be doing the follow up care. It is HIGHLY important to make sure your follow ups are done with the treating teams (ie: radio oncologist and neuro onc, both are part of the teams regardless if CK or GK). They will need to be the ones to follow you should you run into post-radio issues (ie: enhanced issues such as enhanced tinnitus, enhanced hearing/balance issues, etc).
For me, treatment was in my own back yard (living in metro Boston, wonderful medical facilities are right here) so for me, it was an easy choice but you have narrowed it down to wonderful choices. Both, GK and CK, are extremely terrific choices and it's a difficult choice..... Question... what does your gut tell you? Go with your gut.
Again, welcome!
Phyl
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Hi!
While you are at it ... suggest you investigate proton therapy. I received proton therapy at Loma Linda University Medical Center, Loma Linda, CA (see some of my prior Discussion Forum entries). With time, I think this treatment modality is likely to become the national standard for AN care.
Good luck with your research!
Steve
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Search under "proton therapy".
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I think Phyl and I have a mutual-admiration society goin' on, because I agree with her advice whole-heartedly. I think if hearing preservation isn't an issue, then CK and GK have equal potential for a great outcome. They are very similar.
Steve, I've heard of proton therapy but don't know much about it, except that it is a form of FSR (radiotherapy). Can you please tell us forumites how it differs from CyberKnife and GammaKnife and what led you to choose it over those types of radio? Your insight might be of help to Muru.
Thanks,
TW
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I think Phyl and I have a mutual-admiration society goin' on, because I agree with her advice whole-heartedly. I think if hearing preservation isn't an issue, then CK and GK have equal potential for a great outcome. They are very similar.
Steve, I've heard of proton therapy but don't know much about it, except that it is a form of FSR (radiotherapy). Can you please tell us forumites how it differs from CyberKnife and GammaKnife and what led you to choose it over those types of radio? Your insight might be of help to Muru.
Thanks,
TW
Back atcha TW :)
Proton Therapy is now offered (at last check) at 5 facilities in the USA... Mass Gen Hospital and Loma Linda are doing the majority of Proton Therapy AN's from my understanding (I believe Houston is a "newer" facility and unknown how many AN's they have now done). I know of 4 that were treated at MGH with Proton........ 3 of them here on the forums/site (StoneAxe/Bob, tsl and elliemae). Stoneaxe Bob ran into failure with his and had his AN surgically removed within the past 2 yrs. tsl and elliemae have run into post-radio issues (as could any of us) but at last check, things were calming down. I saw tsl last month and she is looking great (as always) and said things were better for her right now. Both of them are a couple of years post-Proton treatment and still being followed by the their Proton team at MGH (Dr. Loeffler and team)
Proton is a very expensive form of radio-treatment for the facilities running it, thus, the costs are forwarded (whether through your health insurance or if you have private insurance out of pocket/deductibles, please research carefully). Typically done "fractionated" (over a number of days), beads are inserted into the head to be used as "markers" during the treatment process (the beads stay in perm). There is no long term data on the efficacy of Proton Therapy on AN's at this time (alot of the data is difficult to find online.... yes, some can be found but still difficult). For me, I am going on first hand experience of those that have had it done here locally as I have met them all face to face and have also kept in touch over time to see how they are doing. Some good, some not so good... typical with any radio-treatment option.
Again, the gut (as well as homework) needs to lead the way.
Phyl
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In theory Proton Therapy should provide the best radiation treatment of all, as the protons release their energy in the tumour, and reduce tissue damage on the way in and on the way out. This gives proton therapy an advantage in being able to deliver higher doses to the tumour with less damage to surrounding tissue, In practice, for AN's the results have not met expectations.
Maybe its because the nerves are part of the tumour. Results so far show more facial nerve complications and poorer hearing preservation rates than Gammaknife or Cyberknife. One day it may well overtake photons, (Gammaknife, Cyberknife, and other Linac treatments). Further studies and refinement are still needed for proton therapy.
http://www.ncbi.nlm.nih.gov/pubmed/21353158
http://www.ncbi.nlm.nih.gov/pubmed/19054586
http://www.ncbi.nlm.nih.gov/pubmed/12943574
http://www.ncbi.nlm.nih.gov/pubmed/11844261
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Just stopped in to say "hey" Muru! Just realized this (recharge) was you...you've been given advice from some of the best participants we have here...so between this and meeting some folks at Saturday's meeting, hope it's helped! Was great to see you again - let me/us know what you decide.
All the best to you,
Cindy
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Thanks everyone for the great info. I need some more time to decide on this.
Cindy, it was great seeing you on saturday.
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Old time poster, just dropping in on the conversation
Tumbleweed nailed the discussion points between CK and GK , which are basically
1) Comfort - CK does not require an immobilizing head frame to be screwed into the skull as GK does
2) Fractionation - CK allows for multiple stage treatments which there is an increasing body of evidence improves hearing nerve performance results over 1 treatment
3) Equal dosing of irregular shaped tumors is better with CK which limits hot and cold spots
Both are very accuarate and good choices for an AN treatment
Paul and Phyl's comments on Proton therapy are also spot on. In theory Proton should be an a viable option and it has had some good results in other types of treatments, but for AN's it has not shown improved efficacy compared to GK or CK, and in fact , studies have shown increased complication rates
Hey Phyl, hope you're doing well. Haven't seen the new newsletter, but I think my story is included in this one :)
BTW, just had my check up with Dr. Chang last week, and I'm officially a successful 10 year CK patient , woohoo
Mark
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Congratulations on your successful CK treatments, Mark! And thanks for reporting back to us all; we don't have enough 10-year veterans around this place! It's great to hear your AN is a goner so many years out.
PaulW, I have to say I'm diggin' your research oriented posts. You rock!
Best wishes to all,
TW
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Hey Phyl, hope you're doing well. Haven't seen the new newsletter, but I think my story is included in this one :)
BTW, just had my check up with Dr. Chang last week, and I'm officially a successful 10 year CK patient , woohoo
Mark
My very dear friend!
Congrats on such terrific news! :) Thrilled to hear this! Will look for "Notes" as well! Happy Holidaze to you and that lovely wife of your's!
Phyl
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Thanks TW,phyl,Mark. Did you guys had any balance and facial issues before or after treatment? If you had these symtoms, did it improve after treatment? Did you have new symtoms like balance issue after treatment? If it is how long you have had this?
I am leaning towards CK...
Waiting for your response.
Appreciate all your suggestion on this.
Thanks
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Thanks TW,phyl,Mark. Did you guys had any balance and facial issues before or after treatment? If you had these symtoms, did it improve after treatment? Did you have new symtoms like balance issue after treatment? If it is how long you have had this?
I'm only speaking from my own personal experience as we all learn around here... "individual results may vary....."
I only had temp enhanced balance/hearing loss/tinnitus within the first year (3-9 mos) due to edema/swelling of the tumor, which can occur with any form of AN radiation treatment. Through keeping my radio team updated, they monitored me closely, prescribed steroids (for a couple of weeks) and things calmed down.
5-1/2 yrs later (ie: now), I am what I was pre-treatment, including my hearing levels. My tumor, like Mark's and TW's, has also slightly shrunk (not "usual" but can occur).
Hope that helps.
Phyl
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Hi Recharge,
I'm curious why you would go to Stanford for CK. At my appointment at UPMC, Dr. Hirsch suggested CK and said that they do it there. Does anyone know whether UPMC has a good track record with CK?
I'm still confused and haven't made a decision between CK and mid fossa.
Lisa
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I am now 17 months post treatment.
Before treatment my AN was already giving me grief with hearing, balance, "Wonky Head", concentration problems, tiredness, and mild tinnitus.
Almost immediately after treatment all of these things got worse. It was annoying but very tolerable.
About 6 months after treatment, the "Wonky Head/living in a cloud", feeling went away for 30 minutes. A week later it went for a few hours.
Now after 17 months I feel completely normal most of the time. Hearing has improved and is within normal range again.
Overall I am better now than I was pre treatment, except for balance.
However I really should not complain too much about my balance either.
Standing on precarious stools to change light bulbs, snow skiing, cycling, have all been done.
I still feel odd doing those activities, but am very capable of doing everything again.
Most of the issues occurred from 0-9 months. Every month things continue get better.
I am very nearly back to my old me.
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Not sure if this is the right place to ask, but I'm curious about the treatment of AN via CK for a 3.0cm tumor. I am newly diagnosed with AN (Nov 23), and only met with my neurosurgeon once. I have not met with a surgeon for radiation options yet. Just doing research and it looks like I'm right on the border for being a candidate for CK. I won't see the radiation surgeon until Dec 22nd after my contrast MRI. My guess is it's too big at this point, so I'm already leaning towards surgery. But I'm still curious about CK.
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Thanks TW,phyl,Mark. Did you guys had any balance and facial issues before or after treatment? If you had these symtoms, did it improve after treatment? Did you have new symtoms like balance issue after treatment? If it is how long you have had this?
I had severe vertigo, disequilibrium (imbalance and "wonky head") and oscillopsia, and sudden hearing loss and tinnitus, at the onset of my symptoms. My vertigo and oscillopsia fairly quickly abated and disappeared (within a couple months). I was misdiagnosed for 7.5 years, during which time my disequilibrium and hearing worsened progressively and I became more fatigued. I did not have (and have not since had) any facial symptoms.
Immediately after CK treatment, the loudness of my tinnitus dropped 90% and has since stayed that subdued; this is a very unusual (and welcome!) result. My balance became about 15 to 20% worse, subjectively, for about 6 months, after which time it steadily began to improve. (According to Dr. Chang, about 25% of CK patients report improvement in their balance over time compared to their function at the time of treatment.) Now 41 months post-treatment, my balance is about 80% recovered and my energy level has pretty much completely recovered. My hearing is roughly 20 to 25 dB worse in my midrange frequencies compared to at the time of treatment but has stabilized in the past year (no further loss); I still have useful hearing in my ear on the AN side.
One thing to keep in mind: Any symptoms you have at the time of treatment may temporarily get worse (possibly for several months to over a year). But it is highly unlikely that symptoms you don't have at the time of treatment will arise after treatment. This according to Dr. Chang.
Davecz: As you know, your tumor size is right on the cusp of being too big for radiation treatment. Radiation often causes the tumor to swell for a few months, and swelling of a tumor already at 3 cm size (pre-treatment) would cause pressure on the brain stem. Also, the brain stem is more likely to receive collateral damage from irradiating a 3cm tumor that is already indenting it. Those are the main reasons I know of that make radiotherapy practitioners leery of treating tumors over 3 cm in size. But if I remember correctly, Staten Island Hospital often treats ANs larger than 3 cm with radiation, so you might ask them for a consultation if you'd like to consider that. And I wouldn't rule out UPMC and Stanford before they review your case. Whether or not to treat a 3cm tumor is determined on a case-by-case basis by each consulting physician; there is no universal cut-off.
Best wishes,
TW
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Thank you Tumbleweed. I figured the swelling issue would be a big concern. Appreciate the helpful information. More food for thought now. I have a feeling my meeting with the radiation surgeon will only be a few minutes. Not sure I have an option of jumping ship to another surgeon since I'm with Kaiser Permanente. I'll look into that. Thanks again.
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Recharge,
I had no balance or facial nerve issues going into CK treatment and did not have any transitory or permanent impacts in those areas afterwards. On a separate post in the pre-treatment section I referenced a new Stanford based CK study which you may want to review. in their results to date, they have not had a permanent facial nerve injury as a result of CK treatment
Mark
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I think it is important to understand that doctors dont actually use 3.0cm as a cut off.
They actually use the volume of the tumour.
So if your tumour is 3.3 x 2.5 x 2.5 they would do radiation.
I believe around 15cm3 is the volume cutoff which roughly equates to 3.0cm for a spherical tumour
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An excellent point, Paul. Thanks for bringing that up.
Best,
TW
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Thanks to all for your comments. Paul, I appreciate your information. I hope to finally get the full size of my AN tomorrow. I have two contrast MRIs scheduled tomorrow night. Then I'll have my second appt with my surgeon. Finally knowing the full size will certainly help out. Thanks again everyone.
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I am going for cyberknife treatment to standford medical center with Dr. Stephen Chang On Jan end.
I have a question on driving. Dr told me that i can drive next day after the treatment( after 3 days treatment).
Did you guys drive next day after the treatment ( after 3 days if it's fractionated)?
Did you have any balance issues while driving after the treatment ? If you had , how did you prevent it or is there anyway to take any medication to help balance issues ?
I am planning to go to work on Monday. My treatment will be done by Friday and i just take couple of days rest at home and then Monday , i am planning to go to work.
Looking forward for your suggestion and advice on this.
Thanks guys!!!! Have wonderful Christmas and new year!!!!
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Short answer is I felt that I was capable of driving and did.
I can understand why others may not feel so confident.
Can't say it was a total breeze. It took more concentration, and I got tired faster
But it was very possible for me to resume normal everyday driving immediately.
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Agree with Paul.
My treatment was over 5 days... Mon thru Friday. I was driving each day. Actually drove myself to each day's treatment. Took the week off from work and returned to work the following Monday. Some fatigue did set in early on and if it hit during work, my bosses were aware of my treatment and were good about letting me go home early. That lasted approx 1-2 wks (I had vacation time available so was able to dip into it if I left early).
Driving was certainly not an issue for me. Immediately after treatment (same day), I was going to lunch with my friends, shopping, walking dog (lowering my head to scoop her "business"), etc. Some enhanced issues did arise 3-12 mos post treatment but as long as I kept my CK team aware, they were able to jump into play and prescribe (if required) meds to help the cause.
Hope that helps. Again, my own personal experience and everyone is different.
Phyl
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Hi, Recharge:
That's fantastic that you are having Dr. Chang treat you at Stanford. He was/is my doctor, too. I don't think you could do any better; you'll be in extremely capable hands.
If I remember correctly, I didn't drive for at least several days after getting CK, but I had an unusually strong reaction (profound fatigue) to the radiation and coming off the steroids. (Dr. Chang thought this strong reaction portended fast tumor death; the price was worth paying for the outstanding outcome -- including dramatic shrinkage -- of my treatments.)
I hope you can leave work if you feel too wiped out. It's impossible to say how you'll feel. Some people feel completely normal following CK, while others get very fatigued. The most important thing you can do following CK is get plenty of rest and sleep.
Here is a link to a post I think you will find very helpful:
http://anausa.org/smf/index.php?topic=6910.0
There, I detail my experiences with receiving CK at Stanford and include a few suggestions to make the treatments go smoothly and serenely for you.
You're on your way to better health, Recharge. Congrats on choosing a preeminent doctor and medical facility for your treatment.
Best wishes,
TW
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Thanks Phyl, Paul and TW..
Happy new year to all!!!
I am really going to be recharged :) after the treatment and put this thing behind me.
I will write my story about my treatment after my treatment.
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I am from Houston and I had the CK treatment at Stanford with Dr. Chang in August 2010. I am very happy with my decision that I made. To me. Dr. Chang is one of the best for AN. BTW, I drove from the hotel to Stanford and back for each day of the treatment.
TXAN