Author Topic: Under 40?  (Read 14442 times)

ms444

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Re: Under 40?
« Reply #30 on: October 13, 2015, 01:11:58 pm »


Hi everyone....

just thought i would see if any other folks wanted to share their stories?  i see that there have been a lot of views to this thread, so i am guessing that there are lots of patients under 40 that are out there...i am still unsure about what treatment route i'm going to do....i had my most recent MRI a couple of weeks ago that demonstrates that my AN is essentially stable (between 1.7-1.8 ish). it has been almost a year since my diagnosis.

i'd like to get it done this calendar year since i've already paid my deductible, etc.....and am still leaning towards radiation....

i would love to hear more stories from other patients in this age range - thank you!


mcrue

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Re: Under 40?
« Reply #31 on: October 13, 2015, 01:49:13 pm »
everyone is certainly entitled to their opinion, however repeating one provider's perspective is hardly equivalent to evaluating the data and making an informed decision.  it is obvious that 'bad things can happen'.  but to leave it at that is to simplify a very complex issue.

It's not "one provider's opinion".  It is common knowledge, and proven through research, that radiation treatment can, and sometimes does, lead to malignancies.  I simplified the horror of dying from a brain malignancy because I didn't think it needed to be described in detail. 

There are simply too many posts in this forum, not thread but forum, that act as though the worst thing that can happen from radiation is dry eye, tinnitus, etc that most of us are effected by anyway.  That is not the whole truth.  The whole truth is that there is the possibility of a malignancy caused by the radio treatment that is not sufficiently described as "terminal".  To simply call it "terminal" is inaccurate. 

How much should the risk of a malignancy factor into the decision?  That is up to the individual getting the treatment.  The older they are, the less of a factor it should be.  Should it make or break their decision?  The answer is different for a 30 yo than a 70 yo.  At 47, I would not get radiation.  If I make it to 60 and I need treatment, I may very well get radiation because I probably wouldn't live long enough to get a malignancy.  By the time I turn 60, the radio treatments might be perfect in which case getting it would be a no-brainer.

I'm not telling anyone not to get radio treatment.  I am simply telling, since there are some who seem to think I am making this up, that there is a VERY BAD thing that CAN happen and that the younger you are, the more you should consider it.

ANGuy,

You're scaring me, but I like to be informed. Thanks for sharing.

A member of my local Acoustic Neuroma support group who has had CK says his surgeon claims there is roughly a 1 in 500 chance of dying on the operating table compared to a 1 in 20,000 chance of getting cancer from radiation treatment.
« Last Edit: October 13, 2015, 02:05:27 pm by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Doc

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Re: Under 40?
« Reply #32 on: October 13, 2015, 02:35:24 pm »
Reading your story makes me glad my AN was monster size when it was discovered when I was 50. My only choice was surgery...a literal no brainer...pardon the pun (not really). This is one of those times when you need to follow the best medical advice available to you. It’s a deeply personal decision you should make with family.

Take Care ;)

Doc
« Last Edit: October 15, 2015, 05:33:03 pm by Doc B. »
Jul 2009: Left Translab to debulk a 5cm x 5cm AN. Jan 2010: CyberKnife Radio Surgery to combat remaining AN; approximately 3cm.  MRI Jan 12: Good progress. Last MRI Jan 13: All Good! My life got much better when I received my Scleral Lens.

sandyinwisconsin

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Re: Under 40?
« Reply #33 on: October 14, 2015, 06:19:34 pm »
I was 44 when I had 26 treatments of radiation. I'm just fine now.  (2 years later)
Yes, I was against radiation for the first 3 months after my diagnosis,
but after research and research, I became more confident with radiation.  I was very
concerned about my age.

Then I met with my doctor who has a PhD in radiation, and he really calmed
me down.  I also listened to the symposium speakers from 2013.  Their presentations
are on this website. I watched a lot of you tube videos and talked to anyone and everyone who
was willing to listen to me and also tell me their outcomes.

Sandy
1 cm AN deep in the boney canal.  Treated with 26 treatments of radiation in December, 2013.  Please pray with me that this worked.

Mlamb

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Re: Under 40?
« Reply #34 on: October 17, 2015, 07:14:22 am »
I was 38 when I was diagnosed (March 2014) and almost all the doctors I met with recommended surgery other than Dr. Kondziolka who said I could do gamma knife- but that is all he does now and is very good at it. My tumor was 3cm and I felt too big for radiation plus I was young and in great health so I opted for surgery.  I was also terrified of what might happen with radiation down the line. Yours is smaller. I would send my scans to Dr. Schwartz at HOUSE to get a really objective and good opinion on the risks and benefits of both treatments- he does both. I didn't use him but I wish I did. My surgery wasn't that successful. My surgeon, who is also worl renown, left half my tumor behind and now I'm looking at having to do gamma knife in the same year as my surgery.  I was trying to avoid radiation and now I have to do both. send your scans to the best doctors with the most experience and see what they think and how you feel.  Dr. Chang at Stanford -cyber knife. Dr. Schwartz -House. Dr. Golfinos -NYU he does both. Dr. Kondziolka NYU- gamma knife
Good luck-m

Jet747

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Re: Under 40?
« Reply #35 on: November 21, 2015, 10:57:17 pm »
ms444,

I was 37, male, when I found out I had an AN.  I'm now 38.

My AN was a monster (6.3cm x 3.2cm x 4.4cm) with a few cyst surrounding the tumor, I chose a plan of both surgery and radiation in Chicago.

I had the "debulking" RS surgery May 2015.  Gamma Knife, Radiation followed in October 2015.

Having done both, I can honestly say I'm not a fan of GK but so far I have kept my 90% of my hearing and my balance is back to mostly normal.  Recovery from radiation was rough for me, not saying surgery was easy at all (quite the opposite) but radiation recovery was hard, albeit faster than surgery.  Perhaps the GK recovery was harder because I thought it would be "easy" so my expectations were wrong.

I feel very good about the path I took because I made the choice, nobody else. 

Regardless of which path you take, once you decide you should feel confident you have chosen what is best for you, that will make all the difference in your recovery.

Good luck in your decision and feel free to reach out to me if you wish to chat!

Stay positive & best regards,
Jet
RS Surgery May 2015

GK Radiation October 2015

https://www.anausa.org/smf/index.php?topic=21969.0

 


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