ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: LilShell on March 27, 2010, 10:07:52 pm
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Hi there!
I have just become a member...and I hope you allow Aussies! LOL. I am 29 & have been watching my AN for 6 years now (& trying to come to terms with it..), and have now come to the point where i really need to consider what to do. I have a little girl and we'd love to have another, but want to get this out of the way so we can get on with our life.
So I, like many others on here, have the dilemma of choosing radiation or surgery. We were certainly leaning toward surgery before going to see the 'Radiation Guy'. He was sooooo lovely and we walked out of there REALLY surprised at how great it seems. Seems to be the same risks as surgery but MUCH less invasive and no recovery time! I'd like it gone, but if this works, man wouldn't you choose radiation?? I am young too, so i am also unsure about the long term effects...Does anyone know much about this??
Anyhoo, I'm pleased to have joined you and I do hope this helps us to come to a decision....because we're really quite stuck. We are currently just trying to research and pray that one day we'll wake up and know just what to do.
:)
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We are currently just trying to research and pray that one day we'll wake up and know just what to do.
G'day, Lil Shell! Okay, that's all the Australian I know. ;)
What you said above is pretty much how it works. You do some research, you post on the forum, you get confused, you got bogged down, you go for a walk, you take a fresh look, and then one day you just know what you are going to do. It comes from the gut as much as the mind. It can take a little while to reach that point, though.
Radiation is certainly easier to go through as a treatment. You often have some radiation induced effects down the line, at 3 months or 6 months or whatever, and it is somehow less convincing as a treatment, so you are often nervous until some post-treatment MRIs start coming in. But there are lots of us on the forum who have done it and are happy with the results. The long term risk of cancer from this particular kind of radiation treatment is really too low to spend any time worrying about it.
So come on, how big is it, what kind of symptoms do you have, give us the scoop. And is it getting cold in Australia yet?
Welcome to the forum.
Steve
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Lilshell: Let me tell you, surgery is no walk in the park - & with a child to care for... Seems like you've been given a gift of a wonderful dr. who does radiation,
need I say more ? Go with your gut. Always good thoughts, Nancy
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oooo, we LOVE Aussies!! Sorry you had to join us, but welcome. Have had many Aussies on here. Well, several anyway. Hope it all works out for you okay.
G'day from me, too!!
Sue in Vancouver, USA
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G'day back to you all!
Well Thank you so much for your kind reception! You guys do make me laugh! And thanks for the encouraging words. :-*
So Steve, you want some goss huh! lol
Well, I think the tumour is now about 1.5 X 2.5 cm. It is on my left side and I think I'm almost completely deaf in that ear now. It came & went a couple of times in the first couple of years, but now you "have to speak up...and into the good ear!" I'm blessed to have no dizziness anymore as this affected me a bit in the first few years too. The ENT specialist i see is great and a couple of weeks ago he sent me to see both the neurosurgeon that he operates with, and also the Radiologist (if that's what he's called). They pretty much say there is no right or wrong way, it's just a personal choice. But the Radiologist seems very educated in his profession and definitely thinks radiation is the way to go!
So there you have it in a nutshell. You've probably heard it all before, but it's actually really nice to be able to talk about it, and hear encouraging words from those going through or who've been through the same dilemma.
Steve, the weather here is cooling down a bit, but still warm enough to have a fan on. Although my hubby still wants the darn thing on even in Winter! lol
What's it like over there this time of year? Oh, & I love all your accents by the way!
;D
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By the way, how can I put a photo up??
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Hi Lil and welcome. Glad to see you are finding info you seek......... :)
well, Let me introduce you to Larry (Laz)..... one of our favorite Aussies around here (and he's been here for quite a LONG time... we luffs him!)
Larry had his initial AN treatment... surgery... in Sydney. Unfortunately, he had a regrowth, then opted for radiation on the regrowth. He describes some of it in this thread:
http://anausa.org/forum/index.php?topic=9813.msg111847#msg111847
It may be worth taking a peek.... as it notes a "local" having endured both... and within the Aussie medical culture. He pops on here from time to time, so it may be worth sending him a "PM" (email on this site) to get a local's perspective for AN surgery and radiation options.
Hope this helps... and again, welcome.
Phyl
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By the way, how can I put a photo up??
instructions here:
1. Post a picture of yourself on a website such as Photobucket, KodakGallery, Frappr, etc.
2. Once the picture is posted completely on one of these site, take your mouse and "right click" directly over the picture.
3. Slide the mouse to "Properties"
4. In the pop up window, highlight the entire line showing the picture location, then do a "copy" command (you can hold down the control button on your keyboard, then hit the letter "C")
5. Log on to the forums and go to your profile.
6. Once in your profile, down the left side, choose "forum profile information"
7. Once in "forum profile Information", chose the field that says (at the top) that you have your own picture.
8. "Paste" (Control button and the letter "V") the properties link you copied in step 4.
9. Once pasted, go to bottom of page and "save" your changes.
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They pretty much say there is no right or wrong way, it's just a personal choice. But the Radiologist seems very educated in his profession and definitely thinks radiation is the way to go!
LilShell - welcome to the Forum. We have lots of Aussies here.
Treatment decision is a personal choice. You need to decide what is best for you.
I had the choice and chose surgery but one of my main goals was to just have the darn thing out of my head. It was a great choice for me and I've never regretted it. But that said, it was MY choice, it's not everyone's. You want your choice to be your decision - you don't want to second guess yourself after your treatment is done.
Just to make you aware, most "radiation guys" will recommend radiation because it's what they do and what they believe in. Most "surgery guys" will recommend surgery for the same reasons. I was lucky enough to have a doctor who does both and he gave me a very fair picture of each - with all the potential side-effects - and let me decide. If you haven't seen a "surgery guy" or a doctor who does both radiation and surgery you may want to, just to get another opinion.
Best,
Jan
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Hi Lil
Send me a message or email and I can give you the drum on the local scene. Which city are you based in?
cheers
Laz
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Thanks so much for the directions Phyl! Although stretched out & not real nice, I managed to get a photo on! lol
Hi Larry, I am in Brisbane. The ENT Specialist that i see is Andrew Lomas. I saw him initially 6 years ago a couple of times when first diagnosed and again recently. He's done many AN surgeries along with neurosurgeon Frank Tomlinson (who has done about 500 of the things i think). I also went to discuss surgery with Frank a couple of weeks ago, who took me through what happens. The Radiologist I went to see is David Schlect. He was just lovely and very caring. Still not sure which way i want to go. Where abouts are you...Sydney? and what r your thoughts?
Kind regards
Shelley
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Hi Shelley & WELCOME from TEXAS!!
I had surgery when I was 25 - my tumor was very large ("huge" was the medical term) and nothing was said to me about radiation. It was too big and it was 14 years ago so wasn't around much then. I wanted to reassure you that I was able to go on & have 3 beautiful girlies (you can see my blog if you click the world icon on left) AFTER my surgery. I have quite a few "residual" things but please don't be freaked out about that - medicine has come a LONG way in 14 years!! ;) If I found out I had a tumor today and was a candidate for radiation, I would think long & hard about it - it seems like a good way to go! I am a big believer in that our "gut" is really a little nudge from above and when you find the right thing, you'll have that feeling!
Feel free to ask anything!
K ;D
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G'day Shelly, and welcome from a half-Aussie..... mom was a war bride in '44 .... also from Brisbane ..... Kedron and Sandgate .... I love the entire area ..... from Tweed Heads and Coolagatta to the Sunshine Coast!
I chose surgery 6 yrs ago to, as Jan mentioned, get the thing outta there. Also SSD, but no regrets whatsoever.
Glad that your balance issues have subsided, but will return (only for a short while) if you choose surgery. For many, several sessions of vestibular therapy soon after surgery helped get us back to normalcy in that regard. Back to riding coasters within a year.
Well, "good on ya!" for joining in this forum ... a real nice place to visit! And best to you in your decision-making.
Greg
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Hello - and welcome, Shelley ~
My only connection to Australia is watching Paul Hogan in 'Crocodile Dundee' back in the 80's and thinking his incongruous, unflappable persona was amusing. "You call that a knife? Now, this is a knife!" Loved his accent, too.
However, I have to agree with my fellow posters that treatment should be based on your research, lifestyle and whatever factors matter to you, but mostly on your own good instincts (sometimes referred to here as 'your gut'). I underwent both surgery and radiation for a large AN, quite successfully. It's true that radiation is less of an imposition but it carries it's own set of risks and inconveniences, as you'll inevitably learn. Radiation may well be your best choice but whatever treatment you chose, we'll be here to support you.
Jim
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Accent? What accent? ;) ;)
Sue in Vancouver, USA
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Hi Shelly,
Firstly Ms Sue us Ozzies don't have an accent - everyone else does! you should know that by now, actually
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OOPS,
Hit the wrong button, anyway as i was saying,
I am in Sydney. I saw Dr Smee for my radiation treatment. I thought he was great - no nonsense, gave a very detailed analysis on the process and the goal and I left having confidence in the man and further more, there is no out of pocket costs whatsoever - totally covered by medicare. that includes all MRI's and all follow up MRI's.
I don't know the brisbane docs names but i am currently emailing another Brisbane lady who is in the same boat as you. I'll get her to have a look at your post and see if she wants to reply to you. The best parts of radiation by Smee is that he has a 100% record of stopping the AN growth and a 100% record of no collaterall damage (facial nerves etc).
You could do worse than send him your scans on CD to get his view. I can email his details if you like.
laz
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Welcome, love Aussies :)
Hubby is two weeks post op from his Gamma Knife surgery and he can't understand why anyone would NOT pick this option. It was a piece of cake from start to finish, including having the head frame attached, he even did that without the happy pill they offer you. He didn't want to feel drunk all day, LOL. We were in the place just under 3 hours and aside from a killer headache for the 6 days he was taking the steroids he has had no lasting effects. From a caregiver's prospective I would highly recommend gamma knife, especially with a small child to care for. We have some posts of his whole experience if you want to check them out. I wish you well in whatever you decide :)