Radiation the Right Choice?

[djameson]

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

[ppearl214]

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

[Kilroy1976]

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?

[Mark]

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.   

Mark

[shoegirl]

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.   

[Kilroy1976]

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.

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.

[okiesandy]

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.

[ppearl214]

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