Radiation Therapy-24-25 tx's

[KMacDonald]

Hi everyone,
   I have an AN, 1.3c, diagnosed Jan 2008.  After doing some research, I am 95 % sure that I want to have radiation when it is needed.  MGH and Dr. Loeffler are my choice.  I have heard that if your tumor gets bigger than 2.5  cm that you can't have radiation and will need to have surgery.  Is this true?  Also, I am going to be 63yrs.old.  Who out there has had this radiation and how did you fair?  I know that it takes up to 18 months to see results.  What about the side effects!  Any info will be helpful...........Kathy MacDonald.(KMacdonald)

[gordy]

im  a bit younger then you but i had gamma =knife about a year ago in july. mine was 1.5 by 1.5 near your size and didnt have to many issues that i am aware of. only had hearing lose that i noticed from the begining. i do notice that the words or thoughts dont come out as planned. not sure if its due to that or not. good luck to you.

[Mark]

3 cm or even slightly larger is the rule of thumb cut off for having radiosurgery, depending ultimately on the scans. 1.3 cm is well within the treatable range

Mark

[ppearl214]

Hey Kathy!    (kiss for Bob as well!)

Ok, first things first... please look for "Sue" here (Vancouver Sue as I call her). She's approx your age, had GammaKnife approx the same time as me (approx 2-2/12 yrs ago) and she can share with you about radiation on folks in your age group.  Even though she had GK, she can share the good and not-so-good about radio-treatments for your age but overall, she has done fabulous!

I know you are in great hands with Loeffler at MGH..... which is he noting to you? Proton or FSR?  You met a few folks (and they will be at the next Nov brunch).  tsl/Teresa had Proton at MGH late last year (I think) and elliemae/Elaine is going through Proton as well at MGH.  I know jcinma/Jane had follow up FSR at MGH .... then there is ellenvig/ellen who did GK in Providence with Dr. Noren... and then there is me and colorlady/Donna who did CK at Beth Israel......all of these folks will be at the brunch.  Maybe younger than you, but you will see the overall end results for many that will be there that have been treated locally.

Mark is correct (but don't tell him I said that....) about size rule for radiation treatments.  You are well within the "standards" for size.

It can take 18 mos or longer to see the end results.  Usually 18 mos is fair but for many (myself included), it took a bit longer for the confirmation.  We know it's a slow process for the "boogers" to die their fugly deaths but know you have all of us to help support you during that timeframe.

Potential side affects:  possible enhanced head/ear fullness, enhanced dizziness/vertigo, enhanced balance issues, enhanced hearing loss, etc.  All of these things are "potentials" that we know to keep in our minds but many report lack of these... and some do report them, typically between the first 9 mos (on average) post-radio treatments.  Not all experience this and it really is "individual results may vary".  By knowing these things in advance, it gives you the upper hand in knowing what may happen (but... not to be expected) and not to panic if they do.... but knowing to follow up with the radio-onc in case you do experience any of them. 

Well, I need another cup of coffee but I'm hoping that this helps... and can't wait to see you both at the brunch. Take advantage of all of us radio-patients at the brunch to ask away about our treatments and treatment teams.....a terrific way for you both to learn more and see first hand (as you witnessed last time) all those that are doing well post-radio.

xo to you both!
Phyl

[elliemae]

Hi, Kathy!
Elaine here from the NE gang.  I have also chosen MGH and Dr. Loeffler. I have PM-ed you with all the background info.

Everyone both on the site and behind the scenes (thanks, Phyl and Theresa and Mary!) was extremely helpful in giving me info on their personal experiences.  I don't think I could have made my decision without them!

Which therapy are you thinking of at MGH?  I think Theresa, when she reads this, could also help you, as she had the proton radiosurgery about a year ago.  I'm doing the proton radio-therapy, at the Dr's recommendation because of my other ailments and the possibility that I have a facial, not an acoustic, neuroma.  I am convinced that this will have less impact on the other structures than either the CK (which I had about 95% decided on in May!!) or the proton radiosurgery.  I haven't read much on the site about anyone doing this therapy, so I will be the reporter for it!!  The potential side effects explained to me are much the same as those previously posted.  I am of course hoping that they'll be minimal!

Look forward to seeing you at the brunch in November!
Elaine

[Jim Scott]

Kathy:

I'm not positive if my experience will be helpful - but here it is. 

I underwent retro surgery to debulk a 4.5 cm AN down to about 2.5 cm.  No problems.  After 3 months ('to rest your brain', according to my neurosurgeon) I underwent 26 FSR treatments.  Again, no problems.  I had some residual swelling that produced some mild, thankfully infrequent stabbing pains at the radiation site, but they passed.  An MRI showed signs of necrosis at a year and that has continued, along with some slight tumor shrinkage, according to my last MRI (August, 2008).  I'm fine now and my neurosurgeon only wants me to have an annual MRI.  Oh, I was 63 years old (and in good health) at the time of my surgery and radiation. 

Jim