ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: a.m. on March 13, 2010, 07:25:19 pm
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the original tumor was a 3cm acoustic neuroma.
my 6 month mri showed another tumor, 2.5 cm.
they took another mri 3 months later to see if it was growing and it wasn't. now i'm making surgery arrangements.
not sure what's going on. i've heard all kinds of opinions at this point- mostly folks who think they didn't take the whole thing out or folks who think i have a meningioma. another doctor wants to test me for nf2.
i'm kind of sick of hearing opinions. has anyone else had a tumor that appeared so quickly?
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I kinda went thru the same thing.
first dx tumor was 1.4cm
surgery wa April 7/09..where the operatvie reports the two small strands were left on facial nerve and puts it at 2cm
first post op MRI comes in at 1.6cm...huh I say...bigger then first dx
second post op MRI puts it at 1.3cm
Now considered stable and backin wait and watch
JO
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I haven't heard of one appearing that quickly. It seems more like something left behind, but then again, stranger things have happened, so who knows.
I would suggest, though, they once an AN case gets complicated, it really is time to consult with the best experts you can. McKenna in Boston, or Brackmann at House in LA, or somebody who has been at it long enough to have seen everything.
On the bright side, I am happy to welcome you to the forum.
Steve
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hey guys, thanks for writing back!
tenai98, maybe it will shrink completely and you will never have to worry again! i think i'm gonna start a thread on home remedies.
sgerrard, i'm gonna stay in new york for this one since there's five great teams to choose from. nice to have the doctors nearby in case it turns into a long-term thing!
i checked out your knit hats and they are indeed very nice. have you considered making a summer hat? i really wanted one last year to cover up that scar, LOL!
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Is this "new" tumor in the same spot as the original one? Is it on the same side?
Rob
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yep, same spot same side.
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a.m
Something's very fishy here. There are a number of potential issues that you should explore before making any remedial decision.
Firstly, my high level experience. i had a growth removed via middle fossa. i was told that it was all removed. Then 6 mthly MRI's until 3 years later, the xray didn't look right to me so i queried the surgeon who said , it won't be the AN, but i persiisted and he said he'd query it with his colleagues. Some weeks later, no real news so i went to a different specialist and he said in 2 seconds - yep its there all right. I then challenged the original surgeon who told me yeah, its probably re-growth, its possible because he left the "shell of the tumor" in my head. I said - You told me that you got it all out. he said nothing so i sacked him and have been tempted to sue but don't have the menatl strength to take on the medical fraternity.
The lesson - get second opinions and get a copy of your original surgical notes not your file notes but the surgical notes.
These things can grow very quickly over night the same as they can be dormant for a long period so the growth is possible but that much that quickly - unlikely. More is the possibility that your surgeon didn't get it all out (or much of it in fact)
Laz
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Hi, a.m. - and welcome, although I'm sorry to learn about this somewhat suspicious AN re-growth that has appeared in so short a time.
I have to agree with Laz (Larry) that something doesn't seem quite right about this. I concur with his assessment that, for whatever reason, the surgeon may have left a lot of tumor behind. I also agree with Laz that you might wish to investigate further, as he suggested, before scheduling more surgery, or you might wish to explore the feasibility of non-invasive radiation treatment to destroy the remaining (or re-grown) tumor's DNA and by doing so, permanently stop it's growth. Of course, the final decision is yours alone, these are simply suggestions. I hope this works out O.K. for you.
Jim
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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.
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.
Now, as far as NF2 goes: my understanding is that NF2 is indicated only when the two tumors occur on opposite sides. Since your tumor (if it is indeed a second tumor they're seeing) is on the same side as the first one, you don't have NF2.
Laz's unfortunate experience points out all too well that people who choose surgery to get their AN completely removed from their head (instead of leaving a dead, irradiated AN in their head) should consider the very real possibility, however small, that the entire AN will not be removed. Sometimes the neurosurgeon will choose not to remove the entire thing in order to preserve delicate cranial nerves the darn thing is adhering to; and they may not be able to see that's the case until they're deep into the surgery. Even a small amount of residual tumor can regrow. And with radiation, even a small amount of tumor that survives the radiation can regrow. It's all a big crapshoot.
Best wishes,
TW
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In the "for what it's worth" column, 3cm of the original 4.7cm of my AN was purposely left behind during my Translab Surgery last July because of its proximity to the Brain Stem and the nerves it involves. I've since had CK in hopes of killing off the remaining Tumor whereby stopping any further growth. I'll know in Jun '10 after a scheduled MRI if CK was a success or not...I'm very optimistic. Until than, like many others, I'm in hurry up and wait mode...good at that we are!
Wishing you the best!
Take Care!
;)
Doc
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Hi Doc.... good to hear you are doing ok.
Please keep in mind (and trust me on this one... I've done the wait) that CK and other radio results really don't show end results until 12-24 mos post treatment. Yes, certain indicators may show up earlier..... but, for 6 mos, please keep in mind, based on timing of the MRI and how the radio is doing its trick, that it may take longer to show end results. I just don't want you to be heartbroken if you all don't see anything of significant changes at 6 mos, as it does take time for things to happen and make the stinker die its fugly death.
But, you know this *coff* Dr wishes you, Doc, continued wellness... and hang tough..........
"Dr" Phyl
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Hanging Tough as the good *cough* Doctor has Ordered!
Take Care!
;)
Doc
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Hanging Tough as the good *cough* Doctor has Ordered!
Take Care!
;)
Doc
Fred belly rubs will help the waiting game for radio results. ;D
I can share that on my post CK MRI's, at first, we saw a little darkening to start... then, down the road, we saw the edges of the growth become not as smooth, then black splotches showing up within the growth. Now, Mark (now 8+ yrs post CK) reminded me a year or so ago, that timing of the MRI is also key. Dr. Chang at Stanford (I believe it was Chang) had shared with him that timing of the MRI is critical as well. We could have an MRI done and it could be too early/too soon/too late to see the ultimate of its fugly death.
Now, I just had my 4 yr post CK MRI done (see my thread in "Post Treatment" forum.... "I did a no-no" thread).... and when I peeked at the MRI before the docs (yeah, I'm guilty), I saw certain characteristics at almost 4 yrs that I didn't see in earlier MRI's, which my back up NS confirmed with me when I saw her last week. So, here I am, just 2 wks shy of my 4 yr post-AN-CK anniversary and things are still changing......
So, for you... for your 1st post-AN-CK MRI (too many acronyms! ::) ), sending wishes that it will start to show indicators of the ultimate goal! :)
the waiting game stinks, but with mental strength, the good *coff* drs orders and support from all of us here, you'll be fine :)
"Dr" Phyl :)
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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'.
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
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oh but i am too young for radiosurgery. i am glad you guys have had success though!
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uh?
a.m.
Can you explain what you mean by 'to young for radiation'
Joann
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uh?
a.m.
Can you explain what you mean by 'to young for radiation'
Joann
Yes, please do tell?
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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
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guys- thanks for your opinions, but i already have a treatment plan.
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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
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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
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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
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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
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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'.
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
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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
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... 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'.
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
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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
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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
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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
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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
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Hey guys,
Second surgery went great! I was out of the hospital in 3.5 days, have no headaches six months later, recovered from slight facial weakness in a week, and am on the same MRI-Forever plan as everyone else. Due to losing the balance in the first surgery, there were no further problems with vertigo, etc. The morning after the surgery I was even had breakfast like a normal human being and the nurse was totally nervous about that!
I just turned 30 and am looking forward to dating, maybe even getting a better job- I was afraid to before, because I needed the health insurance!
If it comes back at any point the plan is to get gamma knife.
For the record, I'm in love with the team at NYU.
-a
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A. ~
Congratulations on a successful AN surgery and what seems to be a splendid recovery! Thanks for sharing your good news.
Jim
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I was so glad to read your story - especially the success of your second surgery! As agreed pre-surgery, my doctors debulked my large tumor, but left the shell. Everyone expected that the "hollowed out" tumor would collapse in on itself, leaving a smaller, more manageable tumor - more options, less risk.
My 10 week follow-up MRI showed that, not only did the tumor not collapse as expected, it had almost completely filled back in and the overall size of the tumor was almost the same as pre-surgery! There has been some disagreement among the experts I've seen as to whether the tumor is regrowing very rapidly, or if the existing tumor cells are shifting to fill in the open space. Either way, I have too much tumor to leave and so am scheduled for my second translab surgery at House - hopefully to remove the whole thing this time!
The doctors seem very surprised by my outcome, and I haven't seen any similar stories. In addition to wondering what exactly I'm dealing with, I've been wondering how similar or different the recovery will be the second time around. Thanks for sharing your story!