ANA Discussion Forum
Archive => Archives => Topic started by: Bax on February 22, 2005, 04:50:23 pm
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I am in my 50's and am trying to make a decision regarding whether or not to consider radiation.
Is this a very effective method--has anyone had success with this?
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A website that may help with your decision is: www.cyberknifesupport.org You can actually post a question to a doctor who will answer in a short period of time. I have "waited and watched" for 3-1/2 years and am now leaning towards radiation. Good Luck.
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I did Gamma Knife at Barrow Neurologic Institute in June 2004 for a 1.5 cm AN. I could not be happier with the result. It was outpatient in the morning, I had lunch out that day and worked in the afternoon, my 6 mo. MRI showed a little shrinkage in the tumor, no headaches, no facial nerve damage. Negative side effects were very few - weird tastes for a couple of weeks, some little shooting pains through the radiation area from time to time but they are NOTHING, not like a headache at all, just little shooters. The most significant change has been some loss of balance, especially when fatigued, difficulty turning on a bike, vertigo when I push a hike or climb or bike ride. But that is all getting better with vestibular exercise, has not been very limiting or at all dibilitating. My age is 55.
A year after my sudden hearing loss (about 70% loss), I'm even getting used to that. Life is good.
Good luck to you!
Sally in Prescott, AZ
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First, I wish you the best as you seek out your treatment options. I know for myself that it was not an easy decision and it took me two months to ultimately decide my course of action after I was diagnosed with an 8 mm AN back in June 2001. I ultimately decided on FSR (fractionated stereotactic radiosurgery) at Johns Hopkins with the late Dr. Williams (October 2001). I did a great deal of research and was impressed that he was not olnly a board certified neurosurgeon, but a board certified radiologist as well. He had an impeccable bedside manner and I felt I was in excellent hands. Unfortunately, my tumor did not respond to the FSR and after my April and Oct. 2004 MRI's (I had to have follow-up MRI's every six months after the FSR) it was discovered that my tumor had grown from being a little under 1 cm to 1.5 cm. The Hopkins docs said I needed to have the tumor removed (I am only 34 years old). I had surgery (translab approach) at Loyola Chicago this past January 2005 and am continuing to heal and recover (LONG ROAD). Do I regret my earlier decision to have FSR?? NOT ONE BIT!!! I unfortunately was in the 3% group where FSR failed. If I had to make the decision over I would still choose FSR. I was angered by my current neuro-otologist who basically chastized me for choosing FSR and saying how difficult it now would be for him and the neurosurgeon to get at my tumor because of scar-tissue residue from the radiation. Don't let other docs blast other treatment options. Their purpose is to inform you of THEIR treatment and not to blast other treatments. It is hard enough that we are left making such a decision and there is no one, clear-cut answer. I also know that even though my tumor was 'successfuly' removed, that there is NO 100% guarantee that it won't grow back. I don't live in fear, have a good attitude and just live my life as though it will not. GOOD LUCK!
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March 12th was the 1 year anniversary of my Proton Beam radiosurgery at Mass General Hospital in Boston. I spent 4 months aggresively researching the alternatives. My decision was based on trying to minimize the effects of treatment. From what studies I could find the numbers show less side effects from radiosurgery than the traditional surgical approaches. Shortly after treatment I had serious vertigo/dizziness for about one month. I missed work for a short while because I felt driving would be dangerous. I still suffer from occasional bouts of vertigo. In August of last year I started suffering from killer headaches. I also have the occasional sharp stabs of pain, similar to what Sally describes above. I also have 90% hearing loss in my left ear (it was at 70% pre-treatment)
At my six month MRI the tumor showed no change.
The Proton Beam is a very focused delivery of radiation. A brand new $50 million facility has been contructed around a 3 story cyclotron used to generate the beam. Treatment involves the placement of 3 small marker BB's imbedded in the skull ( a painless quick procedure), a combined CAT Scan & MRI mapping of the tumor and then a 1 hour outpatient procedure for the actual radiosurgery. At least that was my experience. The physics of the proton beam allow for a very targeted dosage.
Today I still suffer from headaches. It is bearable though (with help from the pharmacy) and life in general is pretty good. I would still choose radiosurgery over traditional. I was looking for 20 more years of quality life and not as concerned about the potential for future tumors. I figured if this doesn't work I can always go back to regular surgery. I think that it is the $ talking when Doctors attack radiosurgery. Doctors that do both let the circumstances and wishes of the patient direct the treatment.
Best of Luck to you.
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I too am struggling with the decision on radiation. I have a 1.5 cm tumor and also 55 years old. I have no hearing loss, but have imbalance issues and can't tell if my memory lapses are from this tumor or just plan too much going on! There is a new machine called the Novalis. The radiologist recommended low dose and single shot radiation. I just have not heard anything about that as the gamma knife seems to be the most common. I also asked the dr to refer previous patients to me and so far, I have not heard from one of his patients...that concerns me. Thanks to this website, I am getting more information. Good luck!
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You might want to visit the CK Society web site which is for physicians using the Cyberknife. They have a page there that compares the various radiosurgical machines currently in use. they are at cksociety.org
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Hi
I wouldn't be concerned with pt. replies. They have probably gotten on with their lives.
The concept of ST isn't so new and is comparable to GK.
http://www.novalis-surgery.com/scripts/website_english_novalis.asp?menuDeactivate=1&articleID=991&articleTypeID=77&pageTypeID=14&article_short_headline=Novalis%AE%20Shaped%20Beam%20Surgery
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amn,
who was your surgeon at Loyola who chastised you? Was it Lionetti?
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Thrilled with my CK decision as of today. Will have my 1-month post treatment appt next Monday to follow up on brain edema, etc etc etc. Side affects still there but diminishing.... and am not questioning my decision at all.
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I learned I have an AN last March after going to ER with what was diagnosed as "Acute Viral Labyrinthitis". It took awhile for them to decide what was wrong. MRI showed a small AN. I'm finding you need to have as much information as possible and be proactive in getting help. Audiologist and primary physician seemed to take the "wait and see" approach - no big deal. But things I've read on web indicate it's preferable to use radiation when tumor is small. I have a friend here who had surgery for AN. She's a poor advertisement for surgical success - lost her hearing, balance and has facial paralysis. I see some are sending their info to specific centers for evaluation. I'm in Portland, OR and there's a GK facility here, but it seems rather new. I see there's a CK facility in Seattle - the Swedish Medical Center. Does anyone have experience with either of these? With specific doctors at either? Feedback on CK versus GK? I appreciate all the information I've read in postings and am checking out links provided. I'm new to all this and would appreciate any help. Looks like my next step is seeing a neurologist. Thanks.
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I can't answer your question, but i do know someone that could. Please consider contacting
Dr. Sandra S. Vermeulen. She is associated with Swedish and other centers in Seattle. She's a pretty amazing lady and is very knowledgable in the field of radiation. She on the board of IRSA.
her phone number is 206 386 2323
I hope this helps
Best to you
Raydean
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Mayfete,
Here is a link which discusses differences between the primary radiosurgry / radiotherapy machines. It might be helpful for some of your questions comparing systems.
http://www.cksociety.org/PatientInfo/radiosurgery_stereotactic_technology_comparisons.asp
Good luck
Mark
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I know there are positve outcomes with radiation and hopefully it will kill the tumor. Make very sure the surgeon knows what he is doing. I had my balance nerve zapped and have been dealing with vertigo for the last 13 months, the first 10 months were very hard and I have spells of vertigo that make me sick, I am pretty sick again right now, there always seem to be motion going on in my head at times pretty awful, feels like you could fall down and get violently ill. Ask many questions. Don't mean to scare you just want you to be aware.. Take care. Deb
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dowdog--yes, it was leonetti at loyola. thankfully, I had an excellent rapport with dr. douglas anderson (neurosurgeon) and still went ahead with them anyway.
amn
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I was dignosed with a 2cm AN last April and spent several months doing the research like the above folks mentioned. I chose to have the 5 session FSR at Johns Hopkins last June 2005. I have just returned from my 1 year MRI and consultation with Dr. Riggamonti. I am delighted to say that the tumor has shrunk to 1.5cm and is still showing signs of necrosis. I now only have to do the MRI's yearly now but will miss going to Baltimore. I am 59 and my wife and I live in SC so it has been a good trip for us. The process is stressful but I still enjoyed the time we spent there. I still have 60% or so of my hearing in the AN side, ringing in my AN ear, and numbness in my tongue and lips on the AN side but with this news I can live with this!
I can only attempt to thank the people on the list who have helped me through this journey with their advice, caution and support. No matter what decision you make you still have doubts and second guess everything. The advice you gave was sound-research, research, research, then go with what your gut tells you is best.
Thanks to you all.
David Jameson
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I know there are positve outcomes with radiation and hopefully it will kill the tumor. Make very sure the surgeon knows what he is doing. I had my balance nerve zapped and have been dealing with vertigo for the last 13 months, the first 10 months were very hard and I have spells of vertigo that make me sick, I am pretty sick again right now, there always seem to be motion going on in my head at times pretty awful, feels like you could fall down and get violently ill. Ask many questions. Don't mean to scare you just want you to be aware.. Take care. Deb
Hi Deb,
I'm sorry to hear you are running into Vertigo post-treatment. I have to ask. What kind of radiation did you have? GK/CK/FSR-Novalis/Proton? I'm 2 mos post-CK and dizziness has eased up but balance is still off.
Phyl
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Offense unintended, but isn't going to the cksociety website for a comparison of machines the radiosurgical equivalent of going to the Anheuser-Busch website for a comparison of beers?
Budweiser
Advantages:
 1. Bright--Clean sparkling clarity that amplifies God's Divine Light as it passes through the glass. This shows the attention to detail in the filtering process which eliminates even the smallest imperfections that might detract from the perfect beer taste.
 2. Crisp--Snappy flavor that you get only with Budweiser, derived from the perfect balance of all natural ingredients from far away places. Like Bavaria. And the Elysian Fields.
 3. Clean--The creation of harmony between taste and refreshment. If the greatest 18th- and 19th century composers had written a symphony using only hops, grains and water, Budweiser would have been the result.
 4. Pure--The demand for all natural two-row and six-row barley malt, choicest hops and finest rice. If you desire additives, artificial or chemical ingredients, or if you don't know the difference between two-row and six-row barley malt, you're not a Bud Man and never will be.
Disadvantages:
 1. Any improvement on God's Divine Light may be considered blasphemy by sissy puritan types.
 2. Born-on date assures that Budweiser will be in your local retailer's cooler no more than ten minutes from completion of the brewing process.
Miller
Advantages:
 1. May be used to kill snails in the garden as it is unfit for human consumption.
 2. Popular with consumers that tend to commit violent crimes while drinking.
Disadvantages:
 1. Miller beer is old. And slow. And weak. And pathetic.
 2. Osama Bin Laden drinks Miller.
 3. Uneducated Miller employees enjoy urinating/defecating/expectorating in the wort.
 4. Have you seen how fat Milwaukeeans are?
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I think everyone can draw their own conclusions on the validity or bias of any information that is out there. If you want to assume that Docs in the CKsociety "color" the advantages of CK over other radiosurgical devices that would certainly be one perspective. On the other hand, one could also go down the path that a) all of the docs who use CK today also either currently or previously have used all the other machines out there and b) that the comparison reflects a fair assessment. I wouldn't judge anyone for taking either point of view as everyone in this process has to sort out who they want to believe in evaluating information. At some point, it all comes down to how cynical or jaded you want to treat the information and ultimately what source you want to trust. In a perfect world it would be nice to see such a comparison by an independent group who was qualified to understand the pros and cons but I've yet to come across anything better up to this point.
In terms of the beer analogy, while it is both creative and entertainingly written, it lacks relevance because both Bud and Miller are poor excuses for a beer. Give me a decent Amber anytime over either of those over marketed flavored bottles of water. :P
Mark
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David,
Congratulations! Glad to hear your tumor is shrinking! Wonderful news! Are the side effects you mentioned pre-FSR? If so, have they gotten better post-FSR? If there any chance the numbness will go away?
As far as the comments on the bias of certain websites,
I think the best thing you can do if you are considering radiation - is go to a facility that offers CK,GK,FSR. Learn about all the options. If the doctor seems biased find out why? I was offered all of the above as options and felt in my case CK was best for me. Never felt pressured to have CK. Fortunately, as Mark mentioned my doctors all had experience with all of the machines so I felt their advice was very well rounded.
The CK Society website was great for me - at the time - I couldn't find any other site that had a comparison. I feel fortunate that there is information available on the internet. I had no other way to immediately research AN after I was diagnosed. Had to wait about 2 weeks in between finding out I had AN and actually meeting with someone other than my PCP. Obviously, not everything you read on the web is accurate. But finding out you have AN and then seeing mention of all the different types of surgery and radiation is very overwhelming. Thank god for the internet!
Do what is right for you - consider the facts and make the best possible decision.
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Don't get me wrong, I'm not dumping on the cyberknife at all. I know from the posts on this board that many people rave about it, and that it has been a miracle worker for them. I am positive that it is an excellent machine, but to me that makes it all the more unnecessary to "colorfully" promote it.
An unbiased comparison would have at least made mention of its relatively short track record and the limited number of CK facilities. I was impressed with the machine itself, but a fractionated CK treatment would have required a drive down the length of Florida, a week's hotel stay in an expensive metropolitan area and a week off of work. A week in a hotel in Miami at Christmas? Not gunna happen, not on my salary. :P
Sorry, but puffing should be reserved for car salesmen. The CK is great. They don't need to sell it. Budweiser is dreadful, and they don't need to be selling that either.
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As a person who never thought I would go the radiation route and thought surgery was the only way to go I will offer an opinion..
After a lot of reseach and a visit to a Neurosurgeon who does surgery, GK and CK and to an oncologist who does CK and GK. I was told by both of them that the choice was mine to make. The Neurosurgen told me that in her opinion the control rate for all three was about the same. When I ask her what she would do if she had an AN she did not hesitate to tell me she would do CK and go on with her life. GK would be her 2nd choice because of the head frame. She said both methods a very good and it just depends on your personal choice. When I ask her about surgery and just wanting to have it out she said you have had it for 10 or 15 years maybe more or less and it didn't bother you, why worry about it now? I said all of my neurotologist pushed for surgery. Her response was they don't do radiation, they do surgery. Would a Ford Dealer tell you how good a Honda would be for you? They sell Fords and really don't know about Hondas or care about them. She thinks in the near future radiation will be the treatment of choice for smaller AN's.
When I ask both of them about CK vs GK both said we do both. Both are good. GK has a longer track record. CK will has not been around as long. As for the cyberknife forum. I can tell you my experience only. Dr. Medbery does both. He is honest and in person does not push for one over the other unless you have good or servicable hearing in the AN ear (I didn't). He leans toward CK for that because it seems to be a little better with hearing preservation. the rest is your chooice.
Don't hesitate to go on the Cyberknife site. Ask the doctors. They do answer.
I am almost 7 months post CK and doing really well. I am back to riding my horses, walking and working. At work I have never missed a day because of anything caused by the CK. Only the treatment days and follow up MRI's. I did have some post radiaion symptoms such as facial numbness, a some facial flushing and some other things that have passed. Most of the time I don't even think about the tumor. Yes, I am still off balance and have some fatigue and sleep a lot more that I didn. One of the blessings for me is the tinnitus changed pitch and there are some days that is is almost none existant. My turmor is 8.88% smaller now after only 6 months and a dark line through the middle.
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Regardless of my unique situation with CK treatment, I never ever question my decision and still feel, for me, it was the best dang thing I could have done. Many here that share their updates continue to give me the hope and inspiration to carry on and deal and move on with my life. Not for a second, do I question CK or it's possibilities.
(oh, btw.. last week on Primetime Live on ABC Thursday night, there was a show dedicated to a 19 year old faith healer. One woman with pancreatic cancer tried this teenager faith healer, and for her, it didn't work.. they did an update on her at the end of the show... they talked about how she opted for a "new form of radiation to treat her pancreatic cancer"... and what did they show? You got it! This woman, in the radiation treatment room, and in the backround, the treatment table and a full view of the Cyberknife and robotic arm! I just had to smile!)
Phyl