GK info needed pls...

[tatianne]

just had my annual MRI and the "thing" has grown...

from 9.5mm to 15 mm in just one year...

Im going to be pushing my doc to send me for a GK consultation.

Does GK work just as well on fast growing tumour ??

Any info in regards to statistics and your personal stories and outcomes would be greatly appreciated.
Thanks

[Sheryl]

Tatianne - so sorry to hear about the increase.  As a fellow "wait and watcher", I can appreciate  how you are feeling.  I don't really have an answer to your question but am writing to mention the cyberknife board where doctors will actually answer your posted question rather quickly.  It is:  www.cyberknifesupport.org.  They also will answer questions about GK.
Good luck,
Sheryl

[Lorenzo]

Hi Tatianne,

Sorry to hear about your rapid growth rate.

ANs are active, more or less so, erratic and can speed up and slow down for no reason but their own. I can't imagine that fact has much to do with the success rate of a treatment. They'll treat whatever tumour cells are present at the time, killing them. Their growth rate seems irrelevant to me. But then, I'm not an expert and don't have the answer to your question. It's more of a personal view on it. I have never seen anything mentioned in respect of growth rate v. success rate, but I could have missed it!

The link Sheryl gave you is an excellent one, and they will respond very quickly any questions you may have. Check it out, you'll get experts answers there.

All the best, Lorenzo

[sgerrard]

I would ask the docs at the cyberknife board, they are good.

I think they will say that if anything, it will work faster on a fast growing tumor. The intented radiation damage interferes most with cell division, so a fast growing tumor should fall apart that much quicker. It's a bit like penicillin, which only kills off growing bacteria, not dormant ones. They might even suggest a follow MRI in 3 or 4 months instead of 6, so you can catch the tumor in its death throes.

15 mm is still small, and at that rate, you won't reach 20mm for another year, so you still have some time to plan your next move.

Hoping for the best.

Steve

[1golfnut]

To aid you in your research, I would suggest that you consult this video, http://www.neurosurgery.pitt.edu/imageguided/acoustic_treatment.html which gives you a detailed analysis of how GK works. You will need ReaL Player to view this. If you look to the side of the page in blue, you will see what looks like a video. That is what you will click on.

Although I have chosen Dr. Georg Noren out of Rhode Island to preform my GK in April because of his proximity to where I live, I found that Dr. Douglas Kondziolka out of the University of Piittsburgh  has done numerous AN treatments. If you have a DVD copy of your MRI, send him one for analysis, and he will guide you. also, there is the House Ear Clinic, http://www.houseearclinic.com/index.htm that can help you.

If you highlight each of these web pages and ctrl +c  on your keyboard (at the same time)  which will copy the address and then ctrl +v to paste it in the address bar, it will take you to each individual web site.

Good luck to you, but do not wait too much longer. In my humble opinion, radiation is much better thamn having your head opened.

Rich Bialeck

[GM]

Just a quick note on the mesurement...if your MRI was taken at a different hospital...even if a different Radiologist read the MRI...it could be off by a few millimeters. 

AN's seem to march at their own pace when it comes to growth, some people report some growth...where others report none at all.

I'm not sure how many MRI's that you've had so far...but GK's only limitation that I know of, is on large tumors.  But from my last contact with Dr. Steiner at the University of Virginia, they had treated a few large tumors and had a good success rate...so that theory might be changing as well.

Hope this helps.

Gary

[Sheryl]

Gary - you are right (don't you love when people tell you that)!!  In regards to the measurements on the MRI's - even if you use the same machine in the same hospital or outpatient facility, it could be a different technician or imagine your head just 1 mm different on the table than last time.  I've read that 1 or 2 mm difference is called a "technical difference" and not counted as "growth".  But, then again, don't we all dwell constantly on those numbers 
Sheryl

[Sheryl]

P.S. to my post above - just re-read Tatianne's measurements and they are more than the 1 or 2 mm "technical difference".

[ppearl214]

Dang, you all are good! Best "well educated patients you can be"

Agreed that for most MRIs, there is a +/- factor of 2mm, which can vary based on different MRI machines, different views and "slices" of the scans when being done.... but usually 2mm is fairly close from my understanding......

Since 15mm is the size, considered "small to medium" size and still sounds good for radio-treatment, if that decision is what is being considered. I know of many (ie: Mark and his AN over 2cm at time of CK treatment comes to mind first) that have their AN "radio'd" and did fabulous post treatment.

tatianne, mine was like your's.  It was growing at a good clip 6 months post-initial diagnosis. For me, that is when I pushed for my decision making process and made the best decision I could, for me, at the time. I have faith in you to do the same. GK and CK are wonderful forms of AN treatment options and I know you will do what is best for you. Hang tough... take a deep breath.. and know huggles coming your way to help bring "calm" to you.

Hang tough!!
Phyl

[pearchica]

Tatiane- good luck with your decision- either way it's radiation. If its of any help, my first MRI post ck treatment showed 4mm in shrinkage. Much better than I expected- that was in September, I now go back in march for another MRI follow up- take care, Annie

[elise]

at this stage on your journey, all things considered , i think you still have plenty of time to THINK carefully about all treatment options including every single one of them. Retrospectively, i believe i should have taken MORE TIME at this stage, paid less attention to hype and listened to myself more. i.e. if the symptoms were not interfering significantly with my life ( which they weren't ), i should have rethought "watch and wait" and surgical options. size, as so many before me have said, is sometimes irrelevant, always subjectively measured. to a great extent; location, location, location is the thing. i had gk treatment which looked really good to me at the time and , truth be told, held my growth down for 6 years...now...i'm taking my time before taking my next step.

[tatianne]

Thanks everyone, Im trying to calm down a little and take a deep breath...

Im having a lot of anxiety issues as well which is not helping right now.

Ive noticed lately that there has been quite a few people on the board that have had GK and then had regrowth ?? Is it just me ?? This worries me a little.

[sgerrard]

There does seem to have been a few of those radiation regrowth posts lately. Some may be swelling, or at least not definite growth, but some are regrowth.

This forum has a tendency to be a magnet for the negative experiences, for both radiation and surgery. It makes sense, I guess. They say no news is good news, and that gets turned into good news is not news. I always appreciate it when people post their good results, but those threads are usually short, and often the good news is just a single post in some other thread. We are just regular people, and people like the drama of bad news. Plus those are the people most in need of support from the rest of us. So don't take the number of posts as a good statistic on the success of either surgery or radiation.

I hope your anxiety calms down as you get accustomed to the situation, and that you find the information you need to make your decisions about what is next.

Best wishes,

Steve

[elise]

Tatianne
I guess I was real lucky...at no stage did I feel as anxious about this whole thing as lots of people do. Too dumb I guess. I am 6 years post GK that maybe some people would call "failed". But I can't say it failed...my doctor had told me at the time it would either stop or limit growth, there were no other promises. So when it started to give me trouble again, I can't say I was shocked...just hoped for more. Now the best advice I can give anyone facng this treatment decision thing is to take their time and weigh the odds...I feel that I may have rushed into the decision ( 3 months after diagnosis 1 cm. + -)
Elise

[ppearl214]

Hey elise 

For me, whether I'm right or wrong...... we should never second guess our decisions as they were the best decisions we could make at the time.... as I'm not sure of the current chemistry makup of your AN, 6 yrs later (ie: non-cystic, etc)..... you did what was best for you at the time....it bothers me to see folks, such as yourself and others, that have to endure regrowth or whatever (jcinma  comes to mind as she had 2 AN surgeries and FSR and I have to say, she looks fabulous!) and my hope is that modern medical technologies will advance (as they have since intial AN microsurgeries and AN radio-treatments) to help prevent these types of situations in the future.

Please hang in there.... I know you are having a rough time... but I got a fresh bowl of popcorn with your name all over it! Bon appetite... and hang tough!

Phyl