ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: allegro17 on February 12, 2009, 05:20:03 pm
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I am exhausted from two straight days of all doctors, all day :)
I was really leaning toward radiation, but got pretty freaked out about it from one doc in particular that I saw. Turns out I might be mosaic for NF2, and it was indicated to me that under no circumstances if this is the case should I choose radiation, especially since I am a "perfect" candidate for surgery. This is from someone who performs both on about a 60/40 basis, but inidcated a major preference for surgery in my case even before NF2 came up.
None of the other docs indicated that this should be influential in my decision to do radiation or not. Though virtually all indicated a slight preference for surgery in my case.
One doctor who does both did indicate a slight preference for GK, one doctor who does both (as stated above) indicated a massive preference for surgery, the other 5 kind of said probably surgery if it were up to them, but it's really up to me.
I feel so confused all over again! After the one consultation where NF2 came up, I felt competely scared away from radiation and flipped completely around to the surgery side. now that I have sat on it and done some more research I am back to considering it, but still feel a lot more reservations now than I did previously.
What to do??????? I still don't really want to have surgery but is it the best option for me? I just don't know :( I feel so much like I want to feel as comfortable about radiation as I did before these consults but don't want to make a decision based on wishful thinking as opposed to facts.
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the nf2 is a different wrinkle for me --- i do not know about it. i wish that i could help ...
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I am sorry about all this confusion with your consultations.
I was wondering, what is the reason for suspecting NF2? What does "mosaic for NF2 mean"?
Also I don't understand what "perfect candidate" for surgery means. Perfect for whom?
It is true that radiation has a higher probability of failure with NF2. In fact many of the "failure" cases in the published literature refer to NF2 patients. So if NF2 is suspected this should be a serious consideration. But also, assuming that NF2 may affect both ears, the possibility of complete hearing loss after surgery is also an issue.
You may want to consult with the doctors at the Cyberknife forum, their insight is usually very useful.
Marianna
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I was curious about this one too. I looked up mosaic. In this context, it means that the NF2 mutation was not inherited, but occurred during development at some point. So some of the schwann cells have it, some do not, and nerves have a "mosaic" of the two types.
I think it is a great subject to discuss with Dr. Medbery et.al. on the CK forum: http://www.cyberknife.com/Forum.aspx. I am not aware that "under no circumstances" would apply to such a case, even though NF2 tumors are tougher.
I am still curious what "might be" mosaic for NF2 means. Why might be? Is there some symptom or test result that indicates this? Your description of the doctor showing a major preference for surgery even before NF2 came up, and saying perfect for surgery, suggest to me their opinion is not entirely objective.
Steve
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Ok, I THINK being mosaic means that I have a form of NF2 where some cells have the mutation and some are totllly normal. It is not hereditary rather than a spontaneous mutation that occurs after conception but before birth. In mosaics, symptoms are typically milder, hence the possible occurrence of unilateral AN instead of bilateral (at least so far, knock on wood!!!) and are often times limited to one side or segment o the body, as only a specific population of cells are affected.
This is my understanding of it so far, and so I wonder if the indications for treatment would be the same. Most doctors have told me that even if NF2 was present it would not change their opinion that radiation is a viable option for me.
On a (sort of) separate note, it was brought to my attention by this same doctor that the effectiveness of radiation sort of decreases over time - that the control rates at 10 years are slightly less good than at 5, at 15 less good than 10, etc. and that this should be a consideration considering my age of 29 and having another 60 years for the likelihood of regrowth to continue increasing. This also freaked me out as I thought that a dead tumor was a dead tumor and you usually know this within 3-5 years of the radiation. Anyone know anything else about this?
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The reason he suspects it is that I had a neurofibroma that was surgically removed from my neck as a young child, also on the same side as my AN. I have a potentially funky lump in my left lower leg, too, which I have been told by massage therapists is probably a calcification, but given my AN diagnosis, medical history, and the fact that this bump is sensitive to the touch, it seems logical that this may be another nerve based issue.
I think the only real way to test for mosaicism is to test the actual tumor tissue, since not all the cells have it like in typical NF2. So it is not guaranteed to show up in a blood test. Otherwise I think it is just based on the clinical indications, which I have.
The interesting thing is that this doctor does both GK and microsurgery, and is very well respected. But it did seem to me that he was the most "biased" of anyone I talked to, including neurosurgeons. At the same time, he caught on to a lot of stuff with me that the others didn't, so I am prone to take what he says to heart. This includes also picking up on what looks like it may be a tiny cochlear neuroma in addition to the AN. Not sure if it is or not, and it's only the size of the speck, but it looks suspicious and he found it when no one else did.
Hmmmmm.
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I am wondering too as to why you are being called this. I am NF2 and am probably mosiac but my neurologist never told me this. We know I am NF2 as had the AN on one side with surgery then done and 2 years later the one on the other side appeared. We had no clue till this happened.
Some AN surgeons are very against radiation on NF2 pts while others say yes in some situitations. I am very glad I never did as after the first AN on one side then later a facial neuroma showed up on the same side which we were able to sever the nerve and do a nerve graft and have some improvement. If I had radiation then would that nerve been scarred so I could not end up as good as I did. Who knows! I have now had surgery also on that other side with return of hearing after near deafness.
We are all different and have different outcomes.
Cheryl R
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...the effectiveness of radiation sort of decreases over time - that the control rates at 10 years are slightly less good than at 5, at 15 less good than 10, etc. and that this should be a consideration...
The same is fundamentally true of surgery, as some do regrow. Last summer Carrie (CMP) had one regrow 20 years after surgery. So over time, the control rate of any treatment goes down.
This doctor does sound pretty sharp, or at least very observant, which is a good thing. I would still run it by one of the oncologists on the CK forum, I bet they would have a different take on it, and they are also very well respected and pretty sharp themselves. There are certainly some NF2 patients who do one surgery and one radiation, often in the interest of keeping some hearing on at least one side.
It is not a slam dunk case either way by any means. Keep investigating, hopefully the fog will clear...
Steve
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On a (sort of) separate note, it was brought to my attention by this same doctor that the effectiveness of radiation sort of decreases over time - that the control rates at 10 years are slightly less good than at 5, at 15 less good than 10, etc. and that this should be a consideration
A fairly bold claim to make based on the comments of one doctor. I think it's been pretty well documented over the years that many doctors comments are influenced by bias or plain lack of knowledge of the treatment options, more true of radiation than surgery, but can occur in either case. I have never seen a study to support that assertion and I would challenge it unless the doctor can provide a clinical peer reviewed study to support it.
Mark
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Just as an aside, I found this: "Stereotactic radiosurgery, most commonly with the gamma knife, has been offered as an alternative to surgery in select individuals with vestibular schwannoma. However, the outcomes from radiation treatment in individuals with NF2 are not as good as for individuals with sporadic unilateral vestibular schwannoma, with only approximately 60% long-term tumor control [Rowe et al 2003].
I found it in this long document here: http://www.geneclinics.org/profiles/nf2/details.html (http://www.geneclinics.org/profiles/nf2/details.html)
There is lots of laymen gobbly goop, but you can find nuggets of good information..
Just thought I'd chime in with that.. Hope it's helpful.
Regards,
Brian
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Hi Brian!
Thanks for the info. I think I had read that somewhere myself, too. I also read that surgery generally has less favorable outcomes for NF2. Grrrr. Who knows if it even is related, I won't be able to know for sure unless I have the tumor biopsied. Since I don't seem to have a "severe" case of NF2 to begin with (if it is one at all), i am hoping that all of these radiation/surgical complications might not apply as heavily in my case, either. but who knows. I guess it's just my way of easing my own mind about it!
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Hi Allegro17, I think each NF2 patient has to be more indivualized with how their treatment goes than the usual AN patient. It isn't the same and also as I have mentioned each dr has their own views on care. NF tumors are different in that they have nerves going thru them and not just the tumor stuck to a nerve. I have not seen though where surgery has poorer outcomes. I have done fine with mine. There can be poor outcomes with regular AN pts. There is always NF2 sessions at the AN symposiums and Dr Slattery from House has been wonderful with them. He stated that they have a 75-80% rate of saving the hearing when they do mid fossa on smaller ANs.
I was similarly lucky with my last AN of 1.4 cm that my hearing came back. This is at Univ of Iowa.
It can be hard to know what is best to do. Good luck, Cheryl R
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It does seem that NF2 complicates matters. I copy from a review article published in 2006:
Weil, R S. Cohen, J M. Portarena, I. Brada, M.
Title Optimal dose of stereotactic radiosurgery for acoustic neuromas: A systematic review. [Review] [61 refs]
Source British Journal of Neurosurgery. 20(4):195-202, 2006 Aug.
"Comparison between reports is difficult due to considerable heterogeneity in the acoustic neuroma patient population, radiosurgery details and reporting of results.
In particular, patients with NF2 are likely to represent a sub-group which is particularly difficult to treat. They are at increased risk of complete deafness due to bilateral tumours. Many patients also have other intracranial neoplasms, which may complicate radiosurgical regimens and the concern of malignant transformation is greater. These patients are more likely to suffer cranial nerve damage as well as other complications during radiosurgical treatment, than patients with sporadic AN. Tumour
control rates are also recognized to be lower in all treatment modalities in patients with NF2, with an estimated local tumour control rate of 50% at 5 years. Furthermore, tumour control is often more difficult to define due to increased loss to follow-up and higher mortality in NF2. It may also be difficult to distinguish recurrence of a previously treated tumour from a new lesion. For these reasons, the assessment of radiosurgery for the treatment of acoustic neuroma should best be carried out separately for patients with and without NF2 and studies combining these patient groups may not reflect the true outcome of either of the groups alone."
Marianna
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Something interesting I found out is that apparently NF2 does have many degrees of expression and severity. It seems to be that if I do on fact have some form of this, at least it appears to be a mild one. I don't have bilateral AN's, and hope not to ever in the future, but it does seem that my body may have a somewhat higher propensity than "normal" to form nerve related benign tumors.
You know, it just makes me wonder whether that puts my tumor in the same group as other NF2 tumors. I just don't know (ho could I when I don't even know for sure if the AN is indeed NF2 related in the first place??)
Well, here are two other things I have been wondering, and maybe you all can help me put my mnd to rest about this.
1) the goal of radiosurgery is for actual permanent control right? Like this should, in theory, be a one time is good enough for forever kind of deal, like microsurgery.
2) Is it true that the likelihood of regrowth is higer for an irradiated tumor than for a surgically removed one as time passes by? I know that the statistics seem to be the same for about 15 years of follow up but it has been suggested to me more than once now that the more time that goes by, the higher the chance of tumor regrowth with radiosurgery, as opposed to microsurgery being more of a "cure"
Just hoping for some reassurance?.....
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I would think that the goal of any surgery would be total removal, however keeping in mind that leaving some behind that may need to be irradiated is preferable to permanent damage to the facial nerve.
I hadn't heard that a regrowth is higher with radiation or surgery. I think they're pretty much the same as far as chances go.. 1-2% chance whether you use radiation or surgery. I could be wrong on that.
I read somewhere that 50% of all statistics were made up out of thin air anyhow. ;)
Regards,
Brian
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Hi,
Just read your new worries...I am so sorry to hear that, I just wanted to say Hi and that I wish you lots of luck in figuring it all out.
So I guess after all the appointments in the city you thought you were going to have a better idea on which way to go, now seems like your even more confused....this seems to be the pattern with this condition we all share.
Good luck, PM me if you want to talk
Dawn
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I read somewhere that 50% of all statistics were made up out of thin air anyhow. ;)
Ooh, I like that one. I will be quoting you. :D
1. The goal, and reasonable but not guaranteed expectation, of radiation treatment is indeed lifetime control of growth.
2. The effect of time on regrowth rates is simply that the longer you wait, the more of them will regrow, reducing the percent that are controlled. The principle applies to any form of treatment, including radiation and surgery.
Steve
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Hey Laura,
You have not been confirmed as NF2, right? Possible "mosaic" but no confirmation of add'l growths, correct?
I'm trying to follow along and want to make sure I have my info correct, nothing more....
Hang in there! BTW, you are asking fabulous questions... and hoping everyone's responses are helping.
Phyl
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Hi Phyl,
Correct, I haven't been actually diagnosed with NF2. My AN is unilateral. I had one doctor strongly suspect that I could be somatic mosaic.
Everyone's responses are helping tremendously! I just happen to be the world's worst over-analyzer/decision maker :)
Laura
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I just happen to be the world's worst over-analyzer/decision maker :)
Maybe since the last one, and until the next one comes along. :)
I work with people at work on technical software, and some are prone to over analyze. They drive me crazy some days, but in the end, I like them better than the ones that don't pay any attention to the details. It does pay off, even if it is exasperating half the time.
Along with all the statistics and claims and facts, ANs also come with a big old spoonful of maybe. Once you realize that you will never find a perfectly definitive answer, you will find that you can take into account what you have learned, find a comfort zone and a gut feeling, and come to a decision. Just wait for it.
Some days the fall of 2007 seems like any other fall to me, the usual raking leaves and changing the furnace filter. Other times I think it is just nuts that I went and had my head zapped with x-ray from a giant robot arm. How did I wind up doing that? It is a pretty unusual situation to be in, and a pretty unusual decision to have to make. It should be no surprise that it is not easy.
Steve