Author Topic: Radio is not for young people???  (Read 16166 times)

novagirl

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Radio is not for young people???
« on: August 12, 2009, 02:38:06 pm »
Hello everyone,

I've just recently been diagnosed with an AN (right-side, approx 12mm x 4mm x 5mm, mostly located outside of the IAC). Have been looking at my options and have definitely visited this site quite a bit (already received my informational packet from ANA and have gotten in touch with the local support group).  First of all, you are guys are great! Thank you so much for being around and posting on here. As many before me, I would like to express my gratitude for helping me through the first several days after being diagnosed. Even know I personally wasn't posting anything, I WAS READING A LOT!!! And it has been a tremendous help.

So now, on to my question. My ENT and the neurosurgeon he works with are both recommending surgery. When I asked about radio, they both said NO and cited my young age as the determining factor (I just turned 33). They said since there is no way we can tell what the long-term side-effects/complications could be, they strongly recommend AGAINST radiosurgery. I do have an appointment next week with the CK team in Georgetown (I live in Northern Virginia), but I was wondering if any of you had similar/totally opposite responses from your doctors. I was leaning more towards radio for a couple of reasons: (1) I am a single mother with a very active 5 year old who is starting kindergarten this year, and I really didn't want to be dealing with post-op issues if I could avoid it; (2) quality of life - I still have all of my hearing and no symptoms other than occasional (very rare) vertigo. I've also read posts on www.cyberknife.com, which looked very encouraging.

Anyway, this is my "coming out" post :). And looking forward to reading whatever you have to share.
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 #1 on: August 12, 2009, 02:48:29 pm »
Hello and welcome Novagirl!  Thanks for joining us (although I wish you didn't have a reason to do so - an acoustic neuroma diagnosis).  

I'm pleased to learn that this website/forums have been helpful to you.  Unfortunately, many neurosurgeons and ENT's still cling to the concept that irradiation treatment for for an acoustic neuroma is not recommended if you're much under 50 - or 60 or even 70, depending on the doctor.  Although this may have made sense at some point, it has been shown to be inaccurate.  I'll let others offer the details as to why.  So, your doctors reaction to radiation was drearily predictable.  However, as you've already seen, not every neurosurgeon or ENT holds this outmoded view.  Definitely check out CyberKnife treatment.  

Jim
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.

Kaybo

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Re: Radio is not for young people???
« Reply #2 on: August 12, 2009, 03:33:44 pm »
WELCOME Nova Girl!!

I can't really add to the debate, but just wanted to welcome you!!  I'd be more than happy to chat with you though if you have any questions or concerns or just need an ear.  I am 39 and had surgery when i was 25 so I have kind of been at this a while!  Just PM me your number if you'd like!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Vivian B.

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Re: Radio is not for young people???
« Reply #3 on: August 13, 2009, 05:05:22 pm »
Hi Novagirl,

Welcome! When I saw my surgeon, I automatically assumed that a surgery date would be scheduled. Instead he told me not to make any hasty decisions and to see a colleague of his a Neurosurgeon specializing in radiation. When I saw his referral letter to the Neurosurgeon it said to consider me for radiation assessment. The surgeon explained that there were a lot of risks involved with surgery and why go through it if I had an option that had small risks if any. Also regrowth could happen with both radiation and surgery. When I saw the Neurosurgeon he had a radiation specialist with him who explained the radiation risks factors and they both recommended W and W and indicatedli that from now on I would be followed by their office. I am 46.

Hope this helps.

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

Tumbleweed

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Re: Radio is not for young people???
« Reply #4 on: August 14, 2009, 12:31:44 am »
Hi, Novagirl:

More and more doctors are recommending radiation instead of surgery regardless of age, as there are less risks (especially to the hearing and facial nerves) and far less recovery time with radiation. That said, the choice of treatment is a very personal matter.

The best  course of action is for you to get opinions from three or more doctors who (collectively) practice neurosurgery, GK, CK and "regular" FSR. They'll all have their biases, but you might discover a prevailing, if not unanimous, opinion in their responses. Listen to what each has to say. Weigh the risks vs benefits of each approach. By the time you've received three or four (or more) qualified opinions, you will probably have a strong gut feeling on which type of treatment you want. I got six opinions! A lot, yes, but by the time I got the 6th one, I was already crystal-clear about what treatment I wanted. That peace of mind was invaluable to me.

Several doctors offer free review of your MRI and other tests and a consultation (either written response or via a personal phone call to you):

Dr. Steven Chang (my doctor) at Stanford Univ Medical Center (the facility with the most experience with CK)  is both a neurosurgeon and a CyberKnife practitioner. He will review your case for free. His email address is: sdchang@stanford.edu.

Dr. Derald Brackmann at House Ear Clinic (California) will also give you a free consultation. Many people see House Ear as biased toward neurosurgery, yet Dr. Brackmann recommended I get radiation (specifically GK, but I chose CK instead) once I stressed to him that hearing preservation was vitally important to me. Make sure you explain your goals and concerns thoroughly with every doctor you consult with, as that may influence their recommendation.

Univ of Pittsburgh also gives free consultations; they are the most experienced facility for GK in the US.

Good luck and remember: you are the boss. It's your body, your decision. Take your time. Research your options thoroughly. Then follow your gut instinct. You'll come through just fine, with no regrets.

Best wishes,
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

novagirl

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Re: Radio is not for young people???
« Reply #5 on: August 14, 2009, 06:47:04 am »
Thank you for everyone for welcoming and for your comments. One thing that I definitely realized by now is that I should take my time and get several opinions. The first doctor I saw pretty much said: you need surgery and soon, and that's it. So it's definitely nice to know that there are other options and that this is not an emergency (in my case). I'll let you know what the folks at Georgetown will tell me, but I am also thinking of contacting HEI and possibly Stanford (thank you Tumbleweed for the contact details!) 
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

mk

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Re: Radio is not for young people???
« Reply #6 on: August 14, 2009, 07:48:44 am »
Hi Novagirl,

1.2 cm is still small, and you certainly don't need to rush into anything. Like everyone else said you have plenty of time to consult and reach an informed decision. The cyberknife forum can also be very helpful, and the doctors will answer any questions you have.

It is true that many doctors recommend surgery for younger patients and there are many valid arguments for this. The counterargument is that some young patients lead very busy lives, and may have to care for very young children. I can certainly sympathize with this, that's why I chose to have GK, because I was afraid of the potential side effects of surgery affecting my capability to care for my kids. Others chose to W&W, to try to get through the difficult period of child rearing and take care of this afterwards.

In any case, you have plenty of time for research. In the meantime also make sure to request a follow up MRI (usually 6 months is recommended) to get an idea about what is the growth pattern. Feel free to PM me if you have any questions.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

novagirl

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Re: Radio is not for young people???
« Reply #7 on: August 14, 2009, 08:05:51 am »
Quick update:

I did post the same question on the cyberknife forum and got a response from Dr. Medbery (in record time I might add!!!!). For those of you who are considering the pros and cons of CK, it will probably be interesting to see it.

http://www.cyberknife.com/Forum.aspx?g=posts&t=2070

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 #8 on: August 14, 2009, 09:35:11 am »
Novagirl ~

I'm glad you checked out the CyberKnife forum and received a rapid response from Dr. Medbery.  He stated about what I expected but coming from a licensed physician that deals with AN patients, his words are a lot more compelling and should definitely give you something to think about in the weeks to come as you research options. 

Jim
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.

Melissa778

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Re: Radio is not for young people???
« Reply #9 on: August 14, 2009, 10:47:07 am »
Novagirl,

I recently chose to have translab to remove my AN.  Radio was an option my doc went over with me, but because of location and other factors I chose surgery, and then ended up needing a bit of Gamma Knife anyway.  The decision between surgery and radio is very personal and not always easy.

I am 31 and had Gamma Knife last fall and I feel terrific.  I won't lie, surgery for me even at a young age and being overall fairly heathly was rough.  My gamma knife was a breeze.  I did worry abotu some of the "myths" that are currretly out there about radio and age being a factor, but I'm living for the now.  And if radio now deals me issues later in life, I'll deal with that later in life. :)  One problem at a time :)

Surgery was also very rough on my children.  My son was 5 and my daughter 2 at the time of my surgery, i was 2 hours from home for 6 days.  Seeing mom laid up like that was rough on them.  We went over alot with them prior to and they were a great help after.  But they did go through rough spots themselves.  And recovery varies for everyone, btu it did take me awhile to get back to normal activities.  And some days I'm still not "normal".  Although I find most people aren't anyways :)

Feel free to PM if you care to chat or have any questions.

Melissa
1.6cm X 1.6cm diagnosed Jan 30 2008
Translab Surgery scheduled for May 15th with Surgery went well, got ALMOST all of it.
GK to zap the rest on 10/22/08
2010 MRI showed no new growth tumor measuring at that time at 1.1 x .4
2011 Holding steady
2012 new growth 1.7 x .7 :( :(

novagirl

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Re: Radio is not for young people???
« Reply #10 on: August 14, 2009, 01:26:26 pm »
Thank you for your posts, everyone.
Jim - yes, I was very glad to hear from Dr. Medbery and you are absolutely right, getting an opinion from a licensed physician who treats AN patients for a living definitely carries a lot of weight for me!

Melissa - thank you SO much for your message!!!! Actually, after I read it, I realized something: my ENT (who was so strongly opposed to radiosurgery) did say that if he "doesn't get it all, radiation could be used to treat whatever is left of the tumor." Hmmmmm. Guess that means radio isn't as bad as he painted.... Anyway, I realize there are no guarantees with ANY treatment and there are risks associated with surgery and radiosurgery (and W&W!). So we just have to look at our individual circumstances and figure out what is best for us, as you said, in the "now." And then if necessary just deal with whatever comes our way down the road.

I also really appreciate what you shared about children. I am sorry they had a rough time. I am glad to hear you are doing well now, I am sure that makes them very happy.  One thing that I have really come to realize more than ever before is that my child and her well-being is my top priority, bar none. She needs a healthy and happy mother, and that is my goal.

This forum is absolutely amazing! Thank you everyone, God bless!
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 #11 on: August 14, 2009, 10:55:41 pm »
Novagirl, I'll add a couple more things:

1. Marianna raises a very good point about followup MRIs. Until you've had at least one followup, you don't even know if the tumor is growing. Dr. Brackmann told me he has observed some ANs that didn't grow at all over the course of 20 years! As your tumor is small, "watch and wait" is another viable option for you.

2. When you consult with doctors who do radiation treatments, ask them how long they've been practicing that form of treatment (whether CK, GK, or standard FSR) and then ask them if they've ever seen malignancy arise after treatment (in the irradiated area). I doubt any ever have. Dr. Chang told me a year ago when I was treated that he had not seen a single case of malignancy in post-CK patients, and he had treated over 700 for, if I'm not mistaken, over a decade. Now a decade isn't very long. But GK (which is very similar to CK) has been around for around 40 years now, and I don't think there are any firmly documented cases of malignancy as a result of treatment. I believe I once read about one case -- out of many thousands -- but it arose years ago when doses were much higher and the possibility of coincidence could not be ruled out. Research shows that the chances of malignancy developing are the same as the risk to the general population of developing cancer.

For me, I had to ask myself what was I more worried about: immediate damage from surgery or theoretical damage from radiation decades later in life. I'm obviously over-simplifying my decision-making process here, of course (radiation also obviously causes damage, or it wouldn't kill the tumor) these decisions are not that simple and there's a lot to consider. But hopefully I've given you yet another perspective to consider in making your very personal decision.

Best wishes,
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

eab

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Re: Radio is not for young people???
« Reply #12 on: August 16, 2009, 09:07:18 pm »
Welcome to the club... sorry about the AN, but as you've already said, you've found a great resource in the website. I continue to be amazed at how polarizing this topic is... there is definitely a surgery vs. GK vs. CK among patients and doctors alike.  So while I would love to be a moderate voice, the truth is, I am pro-radio. 

I am 38 and had GK on July 6.  My AN was about 2cm at it's largest.  In considering my options my decision had a lot to do with being the mom of 3 young kids (a 4 year old and 2 year old twins). Also, I have good hearing that I wanted to hang onto, but more than that I'm vain enough to be seriously concerned about my facial nerve.  I have the slightest loss of feeling in my left cheek and didn't want to find out what the rest of my hopefully long life would be like without that nerve.  I am 6 weeks out and feel completely normal, maybe a little tired, but it's hard to tell what the source of that is with 3 kids and summertime heat.  I know that I have a long way to go before I am out of the woods but for today I can keep up with my kids and know with measured confidence that the AN is not going to continue to be an issue in my life.

If you are interested in a really detailed CK story, check out: http://www.myacoustic.org/
He had a tough couple years recovering which seems fairly uncommon, but compared to many of the surgery recoveries I've read about on this site, it could be much worse. (Yes, I know there are people who had surgery who recovered quickly too.)
Best of luck in making this tricky decision.
Feel free to PM me if you want more GK details or have any questions.
Beth
Left side AN 2.5x1.7x1.5cm, limited hearing loss, limited tin., good balance
GK 7/6/09 Hoag Hospital; MRIs at 2, 6 & 12 months show no change in tumor size - hearing etc. same as before GK.

MaryBKAriz

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Re: Radio is not for young people???
« Reply #13 on: August 16, 2009, 10:43:34 pm »
Hi Novagirl,

I just want to say although I am 60, I do know your AN is small like mine. Small ANs are very often candidates for radiosurgery. As people mention it is a personal decision and all I can recommend is do as much homework on the subject with qualified and EXPERIENCED AN dr's. I consulted many and ended up with a doctor who gave me all options, watch and wait, 2 types of surgery or 2 types of radiosurgery. He gave me lots of information, answered a lot of questions but didn't push me into anything. I am very gald I went CK although I have balance issues (I had it before also and have other health problems contributing to that issue). My husband too me out to eat after the treatment! It has  been more than 14 months now and my life is good!

Hang in there and feel free to PM me if you want to talk.

Mary
 :)

Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

sgerrard

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Re: Radio is not for young people???
« Reply #14 on: August 17, 2009, 05:56:42 pm »
One of the sessions at the symposium last weekend was a panel discussion, with various cases presented to 5 physicians by the moderator Dr. Weit. In some cases they all agreed, but it is important to note that even with 5 distinguished and experienced panelists, in some cases they certainly did not agree. In particular, there were cases where some said "definitely surgery" and others said "definitely radiation."

That is just the way it is, and I don't know if the day will come when the entire medical community agrees about when to treat acoustic neuromas with which treatment. If you are considering radiation, you need to find a physician who routinely suggests radiation treatment as an alternative when it is appropriate. Then you can tell whether your case is a good one for radiation treatment.

You might also take a look at Francesco's story, he had CK at age 34 and is two years post CK now: http://anausa.org/forum/index.php?topic=9777.0. He has a web site detailing the entire experience.

Oh yes, and welcome to the forum. :)

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.

 


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