Author Topic: regrowth- really?  (Read 15281 times)

tenai98

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Re: regrowth- really?
« Reply #15 on: March 17, 2010, 03:05:49 pm »
uh?
a.m.
Can you explain what you mean by 'to young for radiation'
Joann
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

Doc

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Re: regrowth- really?
« Reply #16 on: March 17, 2010, 04:56:35 pm »
uh?
a.m.
Can you explain what you mean by 'to young for radiation'
Joann


Yes, please do tell?
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.

Larry

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Re: regrowth- really?
« Reply #17 on: March 17, 2010, 06:45:50 pm »
a.m - sorry to chime in agian.

When i chose surgery, I was not informed of radiation treatment (no fee for the surgeon) and my only understanding of radiation treatment was for cancer patients and i didn't want that. Like an idiot, I didn't do my research properly. Now i know, I must add that age is not a barrier to this treatment. radiation treatment for AN's is very narrow approach in that the growth is the only thing targetted. You don't go into a room and are completely saturated in gamma rays etc.

I must also add that like surgery, there are riskd with radiation treatment however, based on my obervations of posts on this forum, radiation treatment seems to have a much higher success rate than surgery. By success i mean - the AN stops growing, very little after effects such as headaches or facial nerve injury.

Please do your search on this forum for both surgery and radiation treatments and also explore the NET. Either options will affect your life so make your decision carefully. Oh and the strategy for radiation treatment is to stop it grwing, not necessarily to "kill it". Similar but different.

laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

a.m.

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Re: regrowth- really?
« Reply #18 on: March 18, 2010, 11:36:57 am »
guys- thanks for your opinions, but i already have a treatment plan.
diagnosed feb. 6, 2009

retrolab april 2, 2009
new york eye and ear / st vincent's
dr. linstrom and dr. murali
ssd, no tears

translab may 5, 2010
nyu medical center
dr. lalwani and dr. parker

doing great!

Jim Scott

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Re: regrowth- really?
« Reply #19 on: March 18, 2010, 01:35:41 pm »
guys- thanks for your opinions, but i already have a treatment plan.

Of course we collectively support your decision.  I hope and will pray that your treatment plan is effective.

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.

sues1953

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Re: regrowth- really?
« Reply #20 on: March 20, 2010, 08:59:32 am »
I read this thread twice and I'm a little confused  ??? I may have missed somthing but what is AM's treatment choice?

Sue in Michigan
3.2 cm AN Right side diagnosed 12/4/09
Translab surgery May 2010 with Dr. Jack Kartush and Daniel Pieper at Michigan Ear Institute.
Successful surgery .5mm left on facial nerve.  Full facial movement. SSD, Tinnitis, tongue and lip numbness.  No headaches.  Back to living life.

Jim Scott

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Re: regrowth- really?
« Reply #21 on: March 20, 2010, 11:46:55 am »
I read this thread twice and I'm a little confused  ??? I may have missed somthing but what is AM's treatment choice?

Surgery.

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.

Kathleen_Mc

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Re: regrowth- really?
« Reply #22 on: November 01, 2010, 10:39:27 pm »
AM: I also had regrowth of a previously surgically removed AN, I returned to the same surgeon and although he had told me post-op from the first resection "I got it all" being a medical professional myself I was always aware he could have left a cell or two behind.....when I returned to him with the regrowth he said just that and that he more believed  that is whathad happened rather than my having the bad luck to grown a completely new tumor at the same site.  We must always remember doctors are human and to leave  a cell or two behind at the end of a 16 hour surgery and believe you had "got it all" is completely acceptable.
I hope you have successfully had the sucker removed!
I, myself, also choose to have traditional surgery for the regrowth instead of gamma knife etc.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

pjb

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Re: regrowth- really?
« Reply #23 on: November 02, 2010, 08:59:01 am »
a.m., Jim is so highly respected around here, in part because he really knows his stuff. That said, there is no guarantee -- and I'm sure Jim would agree on this -- that radiation will permanently end a tumor's growth. The possibility of regrowth is about the same with radiation and surgical resection.

TW ~

Yes, I certainly would agree that radiation treatment cannot be guaranteed to halt a tumor's growth and I regret any misunderstanding my unequivocal statement regarding the efficacy of radiation treatment on ANs may have caused 'a.m'.

Quote
That said (again), I am a huge believer in radiation treatment and I think if surgery has already failed you once, you should consider a different type of treatment the second time around.

Another statement that I agree with and basically what I stated in my original post.  Thanks for the reiteration. 

Jim


Jim I respect your opinions here on the forum and I too might have regrowth and was advised to possibly have radiation but am afraid of it.. In your opinion aren't you concerned about what radiation does to our bodies in 5, 10 years or so that is what is concerning me now.

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Jim Scott

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Re: regrowth- really?
« Reply #24 on: November 02, 2010, 03:17:52 pm »
Pat ~

I'm flattered to learn that you have respect for my opinions but the fact remains that I'm not a physician and cannot offer scientific, 'medical' advice, nor do I wish to do so.

To answer your question: I had no fear of receiving radiation because it is localized in one specific area and is not spread throughout the body, as some forms of radiation are.  My radiation oncologist and neurosurgeon teamed to 'map' the FSR I received and, because it was not a huge amount of radiation (27 gy) and spread out over 26 sessions, they assured me that I probably wouldn't suffer any ill effects from it.  They were proven correct.  There were no problems at all.  No hair loss, nausea, dizziness or unusual fatigue.  In fact, the daily (weekends off) FSR 'sessions' proved somewhat boring and I drove myself to and from each one, a 60-mile round trip.  I was not too concerned with 'what radiation does to our bodies' in 5 or 10 years', because I seriously doubt that I'll have any problems connected to the radiation I received.  Frankly, even though I was 63 at the time I received the radiation, had I been 20 or 30 years younger, I still would have opted for the FSR to kill the remaining tumor's DNA.  In my opinion, the often-stated fear of radiation somehow 'causing' cells to turn cancerous is mostly conjecture with little scientific evidence to back it up.  Although I had FSR, the Gamma Knife procedure has been around for over 20 years and if it somehow instigated normal cells to turn cancerous, I think we've have heard about it by now.  Frankly, I'm not much of a believer in theories without evidence.  Neither were my AN doctors, which is why we got along so well.  They are brilliant, dedicated medical professionals with years of experience treating AN patients and when they recommended FSR for me, I trusted their judgment. I believe that trust was well placed.  I had a very good surgery and radiation experience (no problems) with a fine recovery.  I wish every AN patient could have a similar experience.       

However, these decisions (surgery or radiation) are very personal and while I'm pleased to share my experience and opinion, I freely defer to the AN patient making that decision and support whatever path they choose.  I always have.

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.

ppearl214

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Re: regrowth- really?
« Reply #25 on: November 02, 2010, 05:41:43 pm »
... and this is why I adore Jim... for his insight, dedication and devotion in sharing knowledge with other AN'ers.....

As one who chose radiation (almost 5- yrs post CK), I'll step aside from this conversation but will note this...... with today's modern medical marvels now available in tumor treatments via radiation (and not just AN's but pancreatic cancers, AVM's, etc).... times have changed... options have changed and hoping everyone does full homework and go with their guts in making final decisions as it pertains to one's own personal situation.  Risks are always there and it's up to us, in doing our homework, to weigh out (for each unique situation) whether or not "risks outweigh the benefits".  In my case, I did weigh risks vs. benefits and for me, benefits won out.....

Phyl

a.m., Jim is so highly respected around here, in part because he really knows his stuff. That said, there is no guarantee -- and I'm sure Jim would agree on this -- that radiation will permanently end a tumor's growth. The possibility of regrowth is about the same with radiation and surgical resection.

TW ~

Yes, I certainly would agree that radiation treatment cannot be guaranteed to halt a tumor's growth and I regret any misunderstanding my unequivocal statement regarding the efficacy of radiation treatment on ANs may have caused 'a.m'.

Quote
That said (again), I am a huge believer in radiation treatment and I think if surgery has already failed you once, you should consider a different type of treatment the second time around.

Another statement that I agree with and basically what I stated in my original post.  Thanks for the reiteration.  

Jim


Jim I respect your opinions here on the forum and I too might have regrowth and was advised to possibly have radiation but am afraid of it.. In your opinion aren't you concerned about what radiation does to our bodies in 5, 10 years or so that is what is concerning me now.

Best Wishes,

Pat
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

pjb

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Re: regrowth- really?
« Reply #26 on: November 02, 2010, 06:02:39 pm »
Just found out it is 3 mm it is small but isn't it large after having a 1 cm surgical removed a year ago ?? I guess I will be doing research in radiation now ??

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

pjb

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Re: regrowth- really?
« Reply #27 on: November 02, 2010, 06:36:24 pm »
Pat ~

I'm flattered to learn that you have respect for my opinions but the fact remains that I'm not a physician and cannot offer scientific, 'medical' advice, nor do I wish to do so.

To answer your question: I had no fear of receiving radiation because it is localized in one specific area and is not spread throughout the body, as some forms of radiation are.  My radiation oncologist and neurosurgeon teamed to 'map' the FSR I received and, because it was not a huge amount of radiation (27 gy) and spread out over 26 sessions, they assured me that I probably wouldn't suffer any ill effects from it.  They were proven correct.  There were no problems at all.  No hair loss, nausea, dizziness or unusual fatigue.  In fact, the daily (weekends off) FSR 'sessions' proved somewhat boring and I drove myself to and from each one, a 60-mile round trip.  I was not too concerned with 'what radiation does to our bodies' in 5 or 10 years', because I seriously doubt that I'll have any problems connected to the radiation I received.  Frankly, even though I was 63 at the time I received the radiation, had I been 20 or 30 years younger, I still would have opted for the FSR to kill the remaining tumor's DNA.  In my opinion, the often-stated fear of radiation somehow 'causing' cells to turn cancerous is mostly conjecture with little scientific evidence to back it up.  Although I had FSR, the Gamma Knife procedure has been around for over 20 years and if it somehow instigated normal cells to turn cancerous, I think we've have heard about it by now.  Frankly, I'm not much of a believer in theories without evidence.  Neither were my AN doctors, which is why we got along so well.  They are brilliant, dedicated medical professionals with years of experience treating AN patients and when they recommended FSR for me, I trusted their judgment. I believe that trust was well placed.  I had a very good surgery and radiation experience (no problems) with a fine recovery.  I wish every AN patient could have a similar experience.       

However, these decisions (surgery or radiation) are very personal and while I'm pleased to share my experience and opinion, I freely defer to the AN patient making that decision and support whatever path they choose.  I always have.

Jim

Thank you Jim for your reply I know your not a physician but I again respect your input... I replied a little while ago I found out it is 3 mm and I am surprised seeing that it was only 1 cm when it was removed ?? I will do more research but I think I might be swaying towards radiation it is just that my regular doctors were so against radiation I became even more confused... But like you said I rather see actual facts with any problems from radiation in 5 or 10  years...

Thank you,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Tumbleweed

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Re: regrowth- really?
« Reply #28 on: November 02, 2010, 11:48:15 pm »
Although I had FSR, the Gamma Knife procedure has been around for over 20 years and if it somehow instigated normal cells to turn cancerous, I think we've have heard about it by now. 
Jim


Actually, GammaKnife has been around for over 40 years in the U.S. (the University of Pittsburgh Medical Center began using it on patients over 40 years ago). But that only reinforces Jim's point that we would've heard it by now if GammaKnife causes cancer.

Pat, the odds of getting cancer from radiation treatments (GammaKnife, CyberKnife or FSR) is virtually no greater than the risk to the general public of getting cancer ; the difference in risk is a fraction of one percent (essentially statistically insignificant).

Why is the risk so small? With GammaKnife (GK) and CyberKnife (CK) at least (the two types of radiation treatment I can speak most knowledgeably about), the radiation is delivered from many different angles so that the beams all converge on the tumor. Each beam is by itself relatively weak compared to the combined total, and it affects only a very tiny part of the brain. For example, with CK there are between 100 and 140 beams of radiation focused on the tumor. So each beam only presents at most 1% (1/100th to 1/140th) of the total dose to healthy tissue in between the skull and the tumor.

Also, the doses of radiation have been reduced a lot since it's early use. Doctors have learned that lower doses are effective in controlling an AN's growth and have reduced the total dosage accordingly to minimize side effects and long-term risks.

I have heard of only one case -- out of thousands -- of malignancy growing at the sight of an AN treated with radiation. When the incidence is that low (less than 1%), coincidence cannot be ruled out (in my mind, at least).

Each type of treatment (radiation and surgery) pose their own risks, but malignancy is not one you should concern yourself with. Statistically speaking, there is a far greater risk of facial-nerve damage (in a functional sense, if not anatomically), hearing loss, and chronic headaches with surgery, in general, than there is a risk of malignancy with radiation treatments.

The biggest question, however, is whether the risk of disabilities during the relative prime of your life (from surgery) should be more of a concern than some theoretical risk decades later (from radiation) that may never materialize. Perhaps I'm a fatalist, but I can't say I won't be killed in a car crash sometime in the next thirty years. I'd rather have those be as full (healthy) as possible. I'm more concerned with today. But everyone must weigh their tolerance for different risks for themselves, as no treatment plan is without considerable risk. My advice would be to concern yourself about those risks that are proven to be statistically significant. Malignancy is not one of those risks.

Best wishes,
TW
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

pjb

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Re: regrowth- really?
« Reply #29 on: November 03, 2010, 11:39:07 am »
Although I had FSR, the Gamma Knife procedure has been around for over 20 years and if it somehow instigated normal cells to turn cancerous, I think we've have heard about it by now. 
Jim


Actually, GammaKnife has been around for over 40 years in the U.S. (the University of Pittsburgh Medical Center began using it on patients over 40 years ago). But that only reinforces Jim's point that we would've heard it by now if GammaKnife causes cancer.

Pat, the odds of getting cancer from radiation treatments (GammaKnife, CyberKnife or FSR) is virtually no greater than the risk to the general public of getting cancer ; the difference in risk is a fraction of one percent (essentially statistically insignificant).

Why is the risk so small? With GammaKnife (GK) and CyberKnife (CK) at least (the two types of radiation treatment I can speak most knowledgeably about), the radiation is delivered from many different angles so that the beams all converge on the tumor. Each beam is by itself relatively weak compared to the combined total, and it affects only a very tiny part of the brain. For example, with CK there are between 100 and 140 beams of radiation focused on the tumor. So each beam only presents at most 1% (1/100th to 1/140th) of the total dose to healthy tissue in between the skull and the tumor.

Also, the doses of radiation have been reduced a lot since it's early use. Doctors have learned that lower doses are effective in controlling an AN's growth and have reduced the total dosage accordingly to minimize side effects and long-term risks.

I have heard of only one case -- out of thousands -- of malignancy growing at the sight of an AN treated with radiation. When the incidence is that low (less than 1%), coincidence cannot be ruled out (in my mind, at least).

Each type of treatment (radiation and surgery) pose their own risks, but malignancy is not one you should concern yourself with. Statistically speaking, there is a far greater risk of facial-nerve damage (in a functional sense, if not anatomically), hearing loss, and chronic headaches with surgery, in general, than there is a risk of malignancy with radiation treatments.

The biggest question, however, is whether the risk of disabilities during the relative prime of your life (from surgery) should be more of a concern than some theoretical risk decades later (from radiation) that may never materialize. Perhaps I'm a fatalist, but I can't say I won't be killed in a car crash sometime in the next thirty years. I'd rather have those be as full (healthy) as possible. I'm more concerned with today. But everyone must weigh their tolerance for different risks for themselves, as no treatment plan is without considerable risk. My advice would be to concern yourself about those risks that are proven to be statistically significant. Malignancy is not one of those risks.

Best wishes,
TW

TW thank you so much for your response I think I am feeling more comfortable with the radiation after the shock of regrowth I can try to focus more clearly now with what I have to do.. It is just that I have never had any luck in any decisions I make so I am a little leery in making another bad mistake.

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

 


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