Author Topic: Age related radiation question from newbie  (Read 12348 times)

Anna7

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Age related radiation question from newbie
« on: March 19, 2008, 02:50:24 pm »
Hello, I'm newly diagnosed (1.3x8x8 left AN) and still struggling with treatment choices.  I am 40 years old and doctors have told me that I'm too young to consider radiation treatments.  I'd like to ask those of you out there who were over 50 yrs old when you had your AN treated with some form of radiation, would you still have opted for it over surgery if you were 30 or 40ish?  (not that 50 is old, just using it as a form of delineating threshold)  When I talked to the surgeon at HEI   I left with tremendous fear about malignant conversion after radiation.

Thanks, Anna 

ppearl214

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Re: Age related radiation question from newbie
« Reply #1 on: March 19, 2008, 03:09:53 pm »
Hi anna,

well, I was 45 (UGH!) when I had CK 2 yrs ago (ok, stop adding it up, folks!)..... and I am really waiting for folks such as Vancouver Sue (GK patient) and Jim Scott and some of the others to chime in about age and radio-treatments... They can best share about radio-treatments done at wonderful ages! :)

Oh, the discussions about malignancy post AN radiation.... I'm REALLY going to sit back and let others note as it riles me up when I constantly read this.... my hope is that dr's would be better informed. Not saying it doesn't happen, but heck, I have more chance of being hit by lightening vs. my radio-treatment causing cancer.  I'm really going to bite my tongue on this one......



Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Anna7

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Re: Age related radiation question from newbie
« Reply #2 on: March 19, 2008, 03:21:13 pm »
Thanks for your prompt response Phyl.  I feel like a chicken with my head cut off right about now.  I don't know, perhaps I'm just searching for security in numbers and would love to hear from others.

jtd71465

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Re: Age related radiation question from newbie
« Reply #3 on: March 19, 2008, 03:26:08 pm »
The odds of having an AN are around 1 in 100,000 but your odds and mine are both 100%.  My point is when it happens to you -  you "become" that statistic. 

I had surgery to remove my AN and have had great results and no complications.  Put yourself in the best hands possible and good things happen.


Joe-
Right side AN removed 1/10/07 @ NYU Medical Center
Dr's Roland and Golfinos

gordy

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Re: Age related radiation question from newbie
« Reply #4 on: March 19, 2008, 04:02:38 pm »
anne im 44 now was 43 when i had gamme knife radiation done on a an 1.5 by 1.5 good luck to you.

leapyrtwins

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Re: Age related radiation question from newbie
« Reply #5 on: March 19, 2008, 04:08:40 pm »
Anna -

I had surgery, but my doc did give me the option of radiation - specifically GK.  I was 45 1/2 at the time of my diagnosis and surgery.
 
If you're currently 40, I can't imagine that 5 1/2 years would make that much difference.  I've always heard that the option of radiation or surgery was more related to the size and location of the AN - not the age of the patient.

But I'm not a doctor; maybe there is some valid reason for this  ???

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

chocolatetruffle

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Re: Age related radiation question from newbie
« Reply #6 on: March 19, 2008, 09:25:05 pm »
There is a neurosurgeon at HEI who also performs Gamma Knife radiosurgery, his name is Dr Marc Schwartz. 
chocolatetruffle


2.8 cm left AN
Translab @ House/St Vincent's 11/27/07
Drs. Brackmann, Schwartz, Wilkinson, Stefan

sgerrard

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Re: Age related radiation question from newbie
« Reply #7 on: March 19, 2008, 09:40:32 pm »
You are more likely to die on the operating table having AN surgery, than you are to get cancer from radiation treatment of an AN. Fortunately, neither one happens very often.

It is a bit sad that otherwise well qualified doctors still trot out that little "threat", despite it being irrelevant when considering treatment options.

.... I'm REALLY going to sit back and let others note as it riles me up when I constantly read this....

Yeah, me too.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Mark

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Re: Age related radiation question from newbie
« Reply #8 on: March 19, 2008, 11:48:38 pm »
Anna,

I think I already offered you my opinion about HEI and radiosurgery advice. While they may have a GK available for a patient even they don't feel comfortable operating on ( such as  too elderly) , they are not proponents of it as a first line approach to treating an AN. Anyone who reads the misinformation about radiosurgery on their web site or listened to the panel discussions at this years symposium ( I bought the tapes) would come to the conclusion that they push surgery. You really need to do some consults with doctors who understand that option. otherwise, you're just going to continue to be frustrated in getting good quality information to make a decision on.

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Anna7

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Re: Age related radiation question from newbie
« Reply #9 on: March 20, 2008, 01:46:06 am »
Thank you all for your thoughts.  I'm leaning toward Cyberknife after already consulting with House Ear Clinic regarding surgery (Dr. Schwartz) and another highly respected neuro oncologist/neurosurgeon at UCI medical center regarding Gamma Knife.  I contacted Stanford and they recommended a Cyberknife center close to me in Los Angeles.  I'm feeling calmer now as I inch closer to a decision.  Feeling out of control has been the worst part of this whole experience. 

Lorenzo

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Re: Age related radiation question from newbie
« Reply #10 on: March 20, 2008, 02:01:55 am »
chiming in a bit late on this. My doc put my chances of getting a malignancy from radiosurgery as smaller than getting cancer from any other cause / reason. I was 44 and a bit when I was treated.
Ciao, Lorenzo
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.

Mia

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Re: Age related radiation question from newbie
« Reply #11 on: March 20, 2008, 03:15:55 am »
Hello

I was 37 when I had GK.

Mia
Right AN 2,1cmx1,8cmx2,1cm
GK 22/5-07, Bergen, Norway
November-07  2,3cmx2,0cmx2,3cm
November-09  2,5cmx2,0cmx2,6cm
May-10 2,4x1,9x2,4cm

Dana

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Re: Age related radiation question from newbie
« Reply #12 on: March 20, 2008, 06:45:15 pm »
Hi,

My response is not based on extensive research on whether GammaKnife (or any radio"surgery") can cause cancer, but I think that it's ironic when one does a Google search for "Gamma Knife causing cancer", all the responses are about Gamma Knife being used to TREAT cancer!

Gamma Knife has been around for decades.  I haven't seen any reports popping up linking Gamma Knife treatment to CAUSING cancer.  Perhaps you could put this question to, for example, someone at the House Clinic in LA (via email) or see if it's discussed on the CyberKnife patient site (Steve, what's that URL?).  I do really agree with Steve that there are many things, including microsurgery for an AN, or totally unrelated things, that are more likely to be difficult or fatal than radio"surgery".

If I were you, I'd research the question more, try to find those who you sense have a balanced perspective, before rejecting Gamma or Cyber Knife.  I can tell you from personal experience that Gamma Knife (which is what I had) is ALOTTTTTTT easier to recover from than brain microsurgery, which several members of my family have had in the past.  Microsurgery can be a good choice, but I don't think that fear of cancer from radiosurgery is a good reason to choose microsurgery.

At age 40 I would have had no qualms about choosing radiosurgery, but that of course is a personal choice.

Keep us posted about your situation, and tell us if you find any balanced discussion or research about this question of radiosurgery for the younger.

Take care,
Dana
1.5 cm AN diagnosed June 2007.   GammaKnife July 19, 2007 at Univ. of Washington/Harborview GK Center, Drs. Rockhill, Rostomily. 
After yearly MRIs for 5 years, it hadn't died. So I'm now leaning strongly toward surgery.

Mark

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Re: Age related radiation question from newbie
« Reply #13 on: March 20, 2008, 08:02:17 pm »
What Dana said  ;)

Nice post, quite on target

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

leapyrtwins

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Re: Age related radiation question from newbie
« Reply #14 on: March 20, 2008, 09:15:45 pm »

Microsurgery can be a good choice, but I don't think that fear of cancer from radiosurgery is a good reason to choose microsurgery.

Dana

I also agree with Dana - and Mark.  In fact, IMO Dana's quote (above) just about sums it all up. 

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways