ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Larry on December 22, 2008, 10:40:52 pm
-
Hi all,
I have been in watch and wait mode for 3 years now and just saw my ENT man following my MRI that i just had. In 15 months, it almost doubled in size. It was 11mm now its 18mm and a lot wider than it was before. This measurement is taken from the bone so only the part that is protruding into the brain. last year it was just hovering on the brain stem, now its pushed its way in.
I see a Dr Fagan and he suggests that the cut off for watch and wait is 15mm and, well, we know that 25mm is the cut off for radiation.
I won't go near surgery again so looks like its the GK machine for me. The machine we have in Sydney is not the newest so I'll have to check it out first.
I have to say that it's so easy to advise people or suggest what to do and encourage etc but when its "you" the message is hard to receive.
Everything is closed now so I'll have to make an appointment in the new year.
Whats that old saying "Sh.. happens.
Laz
-
Rotten news indeed, Laz. >:(
I think you are already SSD from the surgery, and as far as I know, that would be the only concern regarding how new the GK machine is. If you are at 18 mm, you are well within the comfort range for doing GK. It sounds to me like it is time to just set it up and get it done. Who knows, maybe it will tidy up some of the residual symptoms you have been having.
Maybe not exactly what you had in mind for a New Year's resolution, but what else can you do? You have an AN that is growing, and it needs to get treated. I know you have paid your dues, here is hoping that you can have a successful GK treatment and be done with the thing for good.
Steve
-
Laz,
I agree, there is something to be said when the news relates to you. The tough part will be harnessing the emotional energy. But a new year and a new amount of emotional energy is on its way. Also, on the making lemonade side from lemons, 18mm allows you to consider GK as a form of treatment.
We will be here to support you!
Kate
-
Hi Larry,
So sorry that the news of regrowth is not what you wanted to hear! We, that are wait and watch right along with you feel your anxiety and frustration right along with you! When I read your post I just cringed as it's the news we all hope to avoid! The good news is you have treatment options that aren't as invasive as the surgery you already endured! Just know that we care and our hearts and love go out to you and know that you are in my prayers for this to be final for you! Good luck and keep us informed! Blessings are coming your way,
Jackie
-
Laz,.
I'm so sorry to hear that news. I also agree, that it's really alot harder when it's you.
I agree....surgery is hard, so now you know your option to take. I think it's easier to go and just get it over with. For once
and all.
I DO agree, it's the pitts.
But, I'm sure you will do fine, and just keep looking forward. We'll all be here for you.
Lacey
-
Aww Laz, I'm sorry that darn thing has grown. It's a bummer all right! You are stronger than "it", so hang in there, kiddo. You know you have the power and might of the entire ANA Forum to watch your back.
Huggles,
Sue in Vancouver USA
-
Hi Laz...
Give that little bugger a good zapping and let it know that you are the boss!
You are a very positive guy who has given lots of support to others in our 'family' and now its our turn to support you. You will win this contest...no doubts whatsoever about that and we will be with you in spirit all of the way.
Hope Santa is extra specially good to you this year...hang in there and very best wishes for 2009.
Regards
Derek
-
Laz,
It sounds like you got a lump of coal in your stocking this year. Not fair. Use it to heat the barbeque grill and get that sucker zapped. I'm wearing my pirate sox for ya.
Merry Christmas, Laz, the day is coming when you get a great MRI report.
Hugs,
Brenda
-
Hi Laz,
As the hippies used to say, "Bummer". I agree with your GK plan. If I end up with regrowth, I'll go with GK or CK. We'll be thinking about you and sending good vibs your way.
Regards,
Rob
-
Laz,
Another bump or should I say pothole along the road of your adventurous AN journey. Yeah poop does happen, but I know you, our beloved Laz from the land of down under is as tough as they come. Move over all you Aussie leading men, we have our very own Laz and he is going to kick some serious AN butt.
Thinking of you my friend. Enjoy your family and friends over the Christmas holidays.
Anne Marie oxoxxo
-
Laz:
Not much of a Christmas present but then, you've probably been a bit naughty at times, I'm sure. ;) Seriously, we know that 'watch-and-wait' is usually a temporary position and so, the dreaded re-growth has occurred. So, yeah, fecal matter happens.
You're right about AN treatment advice being easy to dispense but a lot harder to receive when it's your AN. Frankly, I consider all advice, including my own, to be worth about what someone pays for it.
For now, I can only I send you my wishes for a successful GK treatment that resolves some of your long-standing post-op issues. Regrowth is always a depressing state of affairs but you're going to take care of this thing once and for all - and show us how it's done. Stay well and stay positive.
Jim
-
Hi, Laz,
Sorry to hear the news! Whatever you do, I wish you the best of luck. I am not sure what kind of version of GK machine you are looking at but I would think that the skill of the doctor creating the treatment plan is even more important. Please, ask how many ANs the doctor treated. I, for one, would not want an inexperienced oncologist just like I did not want an inexperienced surgeon.
Eve
-
So sorry to hear about your accelerated regrowth, Laz. I know kinda how you feel. When my AN grew about 50% in volume in 5-1/2 months and started pressing against my brainstem (while I was in W&W mode), I knew I had to seek treatment. But I was still shell-shocked.
That said, I can't imagine what it's like to go through surgery, only to have the thing grow back. Sheesh, my heart goes out to you.
FWIW, I think you've made a wise choice to seek GK instead of surgical resection.
Hang in there.
Best wishes,
Tumbleweed
-
Hey everyone,
Thx for your well wishes - they do help, they do perk me up. I couldn't imagine having to go through this thing alone. My family is terrific and very supportive buit they haven't been through the ringer themselves so their advice is listened to but not taken that seriously. Their support is vital but it's you guys that I get the encouragement from coz you know exactly what its like and the words have experience / meaning behind them.
Once again, thx for the support. It does give me fighting power.
Donnalyn, I might take you up on that chicken soup!!!! - couldn't hurt (lol)
-
Hey Laz -- there's nothing I can add to what's been said. But you have a good group of people standing behind you.
-
I'm finding "watch and wait" harder than it seems. Can't keep from wondering if one day I'll wake up without hearing in my AN ear, or whether my face will be numb. It's also hard to hear that these things can regrow so nasty. I wonder if a person ought to do both surgery and GK as routine treatment once hearing is lost. I'm talking to Skull Base Institute in LA next week for a second opinion.
Best wishes to you. I remember feeling stunned when my doc called with my first MRI report and said that she was so sorry. Now I know why.
Steph
-
Steph ('highlife'):
If your doctor concurs, I would recommend having surgery, then radiation as this seems to be a very sensible approach. My neurosurgeon proposed this tactic and it was very successful, in my case. Certainly worth looking into as it is not something revolutionary or experimental. I wish you luck with whatever you choose. :)
Jim
-
Sorry Laz, that sucks, no question about it. I hope this time you can radiate instead. I'm sure you can handle it no matter what, but I'm truly sorry. Regrowth is a big fear for all of us, but so many have had to go through it, and they have done well. I'm sending you good thoughts; if only they didn't have so far to go! ;)
Marci
-
Laz -
I'm with the others, this does truly suck :(
I'm so sorry that you have to go through AN treatment not once, but twice.
I wish there were more I could say or do; please know that we are all here for you.
Jan
-
Hi Larry,
So sorry to hear about your AN growth. Good luck with whatever treatment you decide on. I hope that bleeping thing dies a quiet death! You are in my thoughts and prayers.
Wendy