Author Topic: Radio is not for young people???  (Read 16165 times)

novagirl

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Re: Radio is not for young people???
« Reply #15 on: August 18, 2009, 07:04:36 am »
Thank you, everyone, for your support and comments. You guys are amazing!
I'll meet with the CK team tomorrow and hopefully I am a good candidate for radio.... Dr. Medbery seems to think so, but will see what tomorrow will bring. I'll definitely post to let you know.
Steve - yes, I definitely agree with you: the fact that doctors tend to disagree so much on the treatment of an AN can be frustrating. I guess we all wish there was a magic pill that we could take and be done with it! :).
Right AN 10 x 10 x 7 mm - dx 7/28/09; w&w for three years
CK at Stanford October 2012 - Dr. Chang and Dr. Soltys
Oct'12: 15 x 14 x 10 mm
Oct'14: 12 x 6 x 5 mm

Tumbleweed

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Re: Radio is not for young people???
« Reply #16 on: August 18, 2009, 08:49:14 pm »
I've been thinking about Steve's last post on this topic. What's interesting is I remember reading a survey of doctors awhile ago that infers their opinions don't differ so much when it's their brain at risk. In the survey, doctors were asked what form of treatment they would choose if they had to seek treatment for an AN. The overwhelming majority said they'd choose radiation. Age didn't make a difference -- young and old doctors alike chose radiation.

Best wishes,
TW

L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

DR

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Re: Radio is not for young people???
« Reply #17 on: August 19, 2009, 09:59:03 am »
Welcome to another newbie.  Please let us know how your meeting goes today.
AN right side 12mm x 9mm x 9mm
Middle fossa surgery 11/4/09 at House (Dr. Brackmann/Dr. Schwartz)
Tumor removed, no facial issues, hearing intact!
http://denvstumor.blogspot.com/

"The greatest trick the devil ever pulled was convincing the world he did not exist."

novagirl

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Re: Radio is not for young people???
« Reply #18 on: August 19, 2009, 02:02:26 pm »
Well, here is an update. I met with the CK team at Georgetown: a neurosurgeon and a radiation ongologist. They basically said I could choose any of the three options available: w&w, surgery or radiosurgery. I asked the neuro point blank what he'd do if he were me, he said he'd have surgery because he's had surgeries before and he'd want the thing out of his head (I didn't press him whether he's had BRAIN surgery before!). The radiation guy stepped out of the office when I asked that question so he didn't weigh in. But the neuro sais as a rule, the tendency is to recommend surgery for younger people because the recovery (as a rule) would be easier.

They laid out all the risks and possible side-effects and basically left it up to me to make a decision. Both agreed that radio surgery has very good tumor control rates. Also, possible side-effects of surgery are definitely more serious.  Hearing preservation is better with radio. The only concern about radio that the neuro raised was that they cannot tell me for certain that the irriadiated AN will not start growing 20-30 years from now (even though GK has been around for decades, it apparently from what I understood, wasn't used specifically for treatment of ANs). At Georgetown they haven't seen any patients who needed surgery after CK. They also said if I am not ready to make a decision right away to just go back and have an MRI done in October-November (my last one was in July). So that was pretty much it. They didn't tell me anything I didn't know going into the meeting. Nor did they try to steer me towards a particular treatment. So it's all up to me!

This about sums it up.
Right AN 10 x 10 x 7 mm - dx 7/28/09; w&w for three years
CK at Stanford October 2012 - Dr. Chang and Dr. Soltys
Oct'12: 15 x 14 x 10 mm
Oct'14: 12 x 6 x 5 mm

ppearl214

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Re: Radio is not for young people???
« Reply #19 on: August 19, 2009, 02:05:24 pm »
actually, the appt sounds pretty decent. I, personally, would challenge one or 2 of the comments but overall, the info that was shared sounds reasonable.  They are definately right... you are in line for all 3 options... and that it is solely up to you and your personal situation.  Maybe do another MRI in 6 mos and see just how active (or not) the AN is and take the time to continue your research?

Just my 2 cents... but heck, in today's economy, worth less than that! :)

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

novagirl

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Re: Radio is not for young people???
« Reply #20 on: August 19, 2009, 02:12:12 pm »
Thank you Phyl - and it's very nice to virtually meet you. Congratulations on the award.
Just curious - which comments would you challenge?
Personally, I must say I am leaning more and more towards CK, so couldn't understand WHY the neuro thought surgery was a better option when clearly there are known side-effects, and he said hearing preservation is 50/50 (my hearing is 100% on the AN side right now)
Right AN 10 x 10 x 7 mm - dx 7/28/09; w&w for three years
CK at Stanford October 2012 - Dr. Chang and Dr. Soltys
Oct'12: 15 x 14 x 10 mm
Oct'14: 12 x 6 x 5 mm

Jim Scott

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Re: Radio is not for young people???
« Reply #21 on: August 19, 2009, 02:22:59 pm »
Novagirl ~

I'll concur with  my fellow moderator, the award-winning Phyl, that the Georgetown doctors seem to have been honest with you and weren't acting as partisans for any one treatment approach.  I also agree that waiting until the fall to have another MRI scan and see if the AN has grown would be a logical approach.  In the meantime, seriously consider a treatment option, should the MRI present bad news (growth).  We always state that AN treatment is a very personal decision and no one here will try to tell you (or anyone) what to do.  It's clear that both AN surgery and radiation each have pluses and minuses.  There is no totally 'right' or 'wrong' choice, only your choice, based on your research and 'gut' feelings (intuition) about what you believe is right for you.   Other people's experiences, while beneficial as research, cannot guarantee your outcome, no matter which approach you choose.  That being the case, we stand ready to offer whatever we can to help you make a decision, should one be necessary.

Jim
« Last Edit: August 20, 2009, 01:03:17 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

ppearl214

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Re: Radio is not for young people???
« Reply #22 on: August 19, 2009, 02:28:43 pm »
*smiles*

thank you for the congrats and "virtually" nice to meet you as well :)

Only my 2 cents and others here may note differently, which I totally respect (unless they disagree with me ;)  jk) :)


Dr noted to you about being younger and ability to recuperate from surgery quicker. Now, we know that is commonly true with any ailment or surgery... but, with radio... honestly, there is no recuperation.  I took the week off from work for my radio treatment... each of my treatment days (5), I had my CK, went to lunch, got online with here and my work emails (I'm set up to work from home)..... walked my dog, etc etc etc.  I reported back to work the following week.  So, I respect what the doc noted about surgical treatment and younger folks recuperating faster.... with radio, there is no recupe period.

dr is commenting about not being sure if an irratiated AN would grow back in 20-30 years... well, heck... I don't know where I'll be in 20-30 yrs (could be 6' below, ya know?)  I could be hit by lightening or the oldest woman living that becomes pregnant (ok, don't go wishing that one on me!).  Bottom line.... life is filled with risks.  Surgical risks... radio risks... 20-30 yrs from now... I can't think that far forward, so, for me... you do what is best for you and your situation (overall.. ie: financial, facility location, experience of the team, your day to day living situation, your employment, etc).

Only from my own experience... like you, I had high level of serviceable hearing (over 90% at time of treatment).... 3.5 yrs later, I still have over 90% serviceable hearing.  I know of those that lost more hearing after treatment (both, surgical and radio) and some that remained the same. To me, its a Craps Game as "individual results may vary".

There are 2, to date, that I personally know, that had failed CK and went into surgery (they both participated here on these forums).  Success rates for radio, overall, is very high, so for anyone to see an AN radio failure is VERY rare.

Heck, I've been married 2 times now.. that is risk enough for me! :)

so, enough from me... welcome again to the site... disregard the man behind the curtain... but most of all... glad you found us! :)

Phyl

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

ppearl214

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Re: Radio is not for young people???
« Reply #23 on: August 19, 2009, 02:45:59 pm »
sidenote: BTW, there was a girl at the symposium this past weekend that she and her mom have been on these forums for a while. Taylor and TaylorsMom.... Taylor has been through utter heck with her AN journey (you can do a search on "Taylor" on the home page at the top/Search option). Taylor is now 21 and everyone that met her will tell you what a spitfire she is... now she has a small AN regrowth and had CK performed  last week.  So, in keeping with this topics title:  Radio is not for young people?.......young is just fine. Phyl
« Last Edit: August 19, 2009, 02:48:44 pm by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

novagirl

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Re: Radio is not for young people???
« Reply #24 on: August 19, 2009, 05:12:18 pm »
Jim/Phyl - thank you so much for writing back so quickly! And Phyl - the sidenote was really helpful, I really appreciate it! I am really greatful ANs are treatable and am greatful to have options! So will probably wait till the next MRI and at that point make a decision. Right now, it looks like CK would be the best course of action for me (just given my individual circumstances and based on what I learned so far). Clearly, there are no guarantees with any treatment, but I think I'd like to minimize side-effects and try to preserve hearing. Quality of life after treatment is also important to me (a busy working mom talking). I also agree that we just have to take it one day at a time and not obsess with what MIGHT possibly happen down the road. Lots of things might happen (lots of things totally UNrelated to AN!) We can just pray that whatever comes our way will be only good!

Good wishes to everyone. I absolutely love this forum!
Right AN 10 x 10 x 7 mm - dx 7/28/09; w&w for three years
CK at Stanford October 2012 - Dr. Chang and Dr. Soltys
Oct'12: 15 x 14 x 10 mm
Oct'14: 12 x 6 x 5 mm

ppearl214

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Re: Radio is not for young people???
« Reply #25 on: August 19, 2009, 06:30:47 pm »
we kinda like it around here as well. :) Keep us updated on how you are doing.... as you can see... we're all here to help :)  Hang tough!

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

Tumbleweed

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Re: Radio is not for young people???
« Reply #26 on: August 20, 2009, 01:15:38 am »
Chiming in on a couple other notes...

Surgeries can "fail," too. There are (rare) cases of surgeries for AN removal where a piece of the tumor was missed by the surgeon, or left in intentionally because it was involved too much with a nerve to remove without endangering the nerve's function, or it just simply grew back years later for no explainable reason. The recurrence rates for ANs are roughly the same for surgery and radio.

Radiosurgery treatments are very well tolerated by most patients. That said, some people react strongly. I'm one of those. I suffered profound fatigue for about a month after getting CK and was pretty wiped out through the second month post-treatment. But my reaction was highly unusual. It may have been due to my tumor reacting very strongly to the treatment (a plus), because I initially had swelling followed by very dramatic shrinkage. In any case, I would do it all over again in a heartbeat if I had to. CK has been a miracle treatment for me. I only mention my initial trouble post-treatment so that Novagirl knows the risks, however small, of having a strong reaction to the treatment. Bottom line: I feel better now (13 months after getting CK) than I did immediately before getting treatment, so the rough ride was totally worth getting to the treasure at the end of the rainbow.

FWIW, my personal path was watch-and-wait for 6 months after diagnosis to see if the tumor was growing or not. When it was determined it was growing (and growing quickly), I already had chosen CK as my fall-back plan and immediately scheduled treatment for several weeks later (when it was most convenient for me to have it).

Novagirl, I think your doctors went about your consultation in a very balanced way. Most doctors will do as yours did and tell you all your options and then respect that it's your decision to make. And your neuro gave his opinion when you asked for it. I'd say it was a good appointment.

As for the whole 20-to-30-years-from-now-uncertainty thing... if it were me (and it was 13 months ago!), I'd choose the treatment that is most likely to succeed and that's the least likely to do damage in the short-term. There are new treatments being developed in the field of medicine all the time, and a superior form of treatment may be available for treating ANs 20-30 years from now. (I recently posted news about high-intensity ultrasound that shows some initial promise for treating brain tumors non-invasively sometime in the future.) The research I've read indicates CK and GK have equal to the best results coupled with the lowest number and severity of side effects (nerve damage). Especially for young people in their prime, I would think a primary goal should make the next 20 years -- their prime years -- the best in their life, not sacrifice their prime years because of some fears over what might happen 20 or 30 years down the road.

Just my opinion, of course. And perhaps I've overstepped my bounds (if so, I apologize). But this forum is all about sharing opinions and knowledge (and support for one another). Take my opinions with as much salt as you care to.

Best wishes,
TW

L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Vivian B.

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Re: Radio is not for young people???
« Reply #27 on: August 20, 2009, 05:27:19 am »
Hi TW,

Well said. I just wanted to ask you where you posted the news about new treatment ultrasound. I would appreciate it.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

novagirl

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Re: Radio is not for young people???
« Reply #28 on: August 20, 2009, 01:17:06 pm »
TW - just wanted to thank you for chiming in. Everything you said makes ALOT of sense to me and is totally reasonable. I agree and am glad that other people reason along the same lines as I do :). Your story is very encouraging, and your thoughts/comments are always sincerely appreciated.

Best wishes
Right AN 10 x 10 x 7 mm - dx 7/28/09; w&w for three years
CK at Stanford October 2012 - Dr. Chang and Dr. Soltys
Oct'12: 15 x 14 x 10 mm
Oct'14: 12 x 6 x 5 mm

Tumbleweed

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Re: Radio is not for young people???
« Reply #29 on: August 21, 2009, 01:37:16 am »
Hi TW.... I just wanted to ask you where you posted the news about new treatment ultrasound.

http://anausa.org/forum/index.php?topic=10175.0

Best wishes to all,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08