ANA Discussion Forum
General Category => AN Issues => Topic started by: wendysig on May 10, 2008, 03:19:15 pm
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I really haven't had anything new to ask or add to help anyone lately, except keeping track of how Debbi is doing. I have been reading al lot ofwhat everyone else has had to say and I have a question. Once you become one of the "Lucky" few to get an AN is it something that is with you and has to be checked for the rest of your lfe or are you every really "cured"? I realize having had it, it changes things in your life, but can you ever be certian it is really gone?
Thanks,
Wendy
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Hi, Wendy:
The answer to your question may seem a bit ambiguous because there are no guarantees.
AN's, if surgically removed, are physically gone but you'll need an MRI every so often (usually annually, then every 2 to 5 years) to be sure it hasn't reconstituted and begun growing, which can happen if even one cell remains. With radiation, you'll also have MRI tests for some years following treatment to insure the AN is dying or at least, not growing. Of course, should you experience any AN-like symptoms at any time following surgery or radiation, no matter how long afterward, you'll want an MRI to find out if your AN is back. Unfortunately, this can happen...sometimes years later. If radiation does 'kill' the AN, eventually, much of it will be absorbed into the body and it will disappear from MRI scans as it shrinks and dissolves, but this can take years.
The good news is that an acoustic neuroma is not malignant and will not 'migrate' to or 'infect' some other part of your body. It is treatable and unless never addressed, not life-threatening. Usually, surgery and/or radiation resolves the AN problem for most patients. I trust that you'll be one of those. :)
Jim
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Hi Wendy,
I'm with Jim... no guarantees.......
I've been told about having head MRI"s the rest of my life, not just because I opted for radio-treatment, but... AN's on occassion (although rare) may form new ones or regrowths. My just-about-dead AN will be monitored down the road, but the dr's will also have to keep an eye for any potential new or regrowths that could happen.
Very broad question you ask... but hoping our responses help.
Phyl
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Jim and Phyl,
Thanks for your replies. Yes, your amswers do help and are pretty much what I expected. They are most likely gone once removed surgically or destroyed with radiation. That is pretty much what I thought from everything I've learned. I guess in theory, ANs, like diamonds, are (at least kind of) foreever.
Wendy
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Wendy -
I agree with Jim and Phyl - no guarantees. When an AN is removed surgically or the growth is stopped with radiation, it is possible for them to grow again. My AN was completely removed through surgery, but I've been told by my doctor that the chances of recurrence are 1-2%. I also know that my doctor has performed AN surgery on patients who had regrowth after radiaton. I don't know the statistics on regrowth after radiation, but I'm sure they aren't too great.
The solution is monitoring through MRI. From what I recall my doc telling me, the MRIs are usually annual for a period of time, then at some point if no growth is evident, you can have them less frequently.
Jan
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Hi Wendy
That's a great question. IF it does grow back ,I wonder if it would be in the same area or switch to the other ear that's not AN now? I know it might sound a bit of a stretch but, actually, I have been thinking about that as well as a slue of other prospects. My professors in college always told me I think to much. Well, I'm glad I do because that is how I've been able to research all of what I have too with treatment options.
Have a great evening
Claire
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If you read Carrie's posts (she is cmp), you'll see that she had regrowth of an AN after 20 years. It isn't very common, but it can happen.
Besides that, I think AN's are also forever because everyone seems to keep some little memento of their AN experience. For many, that is the tinnitus - the imaginary sounds we hear to remind us that we had an AN. For others, it may be more significant symptoms.
Still, I think for many, the AN and its issues fade into the background, and they are able to go on living pretty normal lives. It seems to me that most people I know who have been around a while have had at least one significant medical event in their lives, so it is really not that unusual to have had something. We just happen to have had ANs.
Steve
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Hi Wendy-
Good question - and one that has been on my mind as well. My docs have arleady said that they will want to monitor me annualy for the next 5 years. I think that I will want to continue some sort of regular monitoring for the rest of my life - I think I would just feel safer knowing for sure that nothing is there (well, other than my brain and that glob of belly fat, of course!)
I expect to also have a close relationship with my regular ENT from this point on, too - I am so aware that I only have one hear left with hearing now, so I am really concerned with taking extra good care of it.
Happy Mother's Day!
Debbi
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Thanks to all of you who have responded to my question. I see I am not the only one who wondered about whether ANs are potentially a lifelong problem. With all the information I have gotten through this forum, the Cyberknife Forum and personal research on the internet, I think a final decision for treatment is very close. I promised my brother I would see his radiation oncologist (he just finished treatment for lung cancer a week or two ago and his doctor said I should check out Cyberkniife. I have an appointment with him for a consultation on 5/16) The neurotologist I saw recommended surgery but said if I wanted a stereotactic procedure, Gamma Knife is the only stereotactic procedure he'd recommend. I went to a GK facility and to tell the truth, I didn't like the way it sounded when he told me about it, when I read about it and going there didn't change my mind. Plus, in my case the doctor there said I had about a 50% (he didn't actually say or less, but I got that feeling) chance of keeping what's left of my hearing, so I'm not sure that 50% was an entirely truthful assessment. I know many of you have had CK but I'm not so sure. It hasn't been around that long and I don't know if I want to try it. In any case, I would not have any radiation treatment more than once, for many reasons. Now discovering that this could be a lifelong problem, although I am not keen on surgery, it doesn't really scare me any more than radiation does. It suddenly sounds like it might be the best option for me. My niece also told me a close friend of hers works for a world reknowned neurosurgeon, Chandranath Sen, who is the Director of Neurosurgery at St. Lukes Roosevelt Hospital in NYC (does anyone know him? I Googled him and checked him out on the St. Lukes Roosevelt website. He sounds great on paper. She can't say enough good things about him professionally or personally. He seems to be as good a person as he is a doctor. I also have an appointment with him for a consultation in a little over a week. After that, I think my plan is to look at all the information I have, make a decision and go for it. Someone I respect very much gave me that advice and I think I will follow it.
Wendy
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AN is forever. The chances of regrowth never end, not to mention the developement of NFII. My regrowth was found 8 years post-op and now at 18 years post op I'm being scanned to check for AN on the otherside. I had gone for 8 years with routine MRI's and I haven't had one since the regrowth was removed a few years ago so I have had some years without "extreme worry" about it. When the regrowth was being "watched" I had yearly MRI's.
AN's are supposed to be slow growing, and one may get away without MRI's for a while,but with taking the chance that there's something there and "getting outta hand". That being said when they found my orginal tumor the comment was "we don't know how this got so big in someone so young". Apparently with what was known about "usual" growth of AN's a 23 year old shouldn't have had one so big!........I excell at something apparently
Kathleen
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Kathleen-
Thanks for your post. I'm so sorry to hear about your regrowth after all that time. You prove my point exactly though. ANs are (or can be) foreever. The treat of them is always hiding around the next corner so to speak. In one of my earlier posts I said something like ANs, like diamonds, are forever . I also meant to say I'd much rather have the diamonds. Don't you just hate if when you excell at something you'd rather not even know about? Nothing good can be said of ANs except maybe the people here. Good luck in your treatment. Let me know how you are doing.
Wendy
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From what I understand, you can't develop NF2. It's a genetic abnormality with one of the tumor suppressor genes, so if it's defective, you would have been born that way. It just may not have manifested itself until later and certainly, no one would have thought to check for it if you're not having symptoms.
The "run-of'-the-mill" AN's are not considered genetically determined (although I have some doubts about that) and do not tend to happen on both sides. It's when people develop them on both sides and usually have some other tumors elsewhere that they find out they have NF2. If the doctor thinks you might have NF2, they should be ordering an MRI of the entire spine to see if you have any other tumors.
I had my one year follow up MRI in February and was told I do not need to have another one until I hit the 5 year post-op point.
I guess some parts of AN are forever - the SSD of course...but I don't think I'll walk around on pins and needles every day worrying that my AN will come back. It happens, and I'll be the first one to say that would really stink, but it's rare. I think driving on the interstate around here probably runs a higher risk of turning out badly than having my AN come back for a second visit. I certainly would never say that I'm glad I had to have brain surgery, but there were many positive things that have come out of it for me - and I guess that's one good thing that can be said of AN's.
Wendy and Kathleen - good luck to you both!
Lori
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AN's as i understand them need to be checked once a year via the MRI route.
My surgeons told me they got all my tumor unless of course some is microscopically there. But the 1 time a year MRI isn't too bad a deal to find out peace of mind.
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There is NF2 which shows up up on many younger people with multiple symptoms besides the various types of brain and spinal tumors. One can have a hereditary version of it but now more of it is showing up as a genetic mutation. I am an older adult onset type of NF2 with no other family member with it. My first AN was in 2001 and no sign of any NF2. The tumor then on the other side showed up in 2003. I then went to have a facial nerve tumor on the same side as the first surgery in 2006 so more surgery and the nerve graft. I did have one spinal MRI with no tumors seen. I hate the thought of not knowing what may happen in the future. Only 5% of AN's end up being NF2 so the odds are one will not end up with it.
Cheryl R
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correct... NF2 is an inherited genetic disorder...
http://ghr.nlm.nih.gov/gene=nf2
hope this helps.
Phyl
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After having translab surgery in June, 2002 and having a 5 year MRI in June, 2007, my surgeon at the House Ear Clinic told me that I was considered 'cured' and that there was no need for additional follow-up MRIs. He also indicated that had I had a re-growth, I would have been the first patient at House with a tumor under 3 cm undergoing translab surgery to have a re-growth.
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Route 66 -
Very interesting.
I'm definitely no doctor, but I've always heard that you should have annual MRIs for the first 5 years and then "periodically" thereafter. I don't know what "periodically" translates to when dealing with ANs; but I've never heard that you should just stop getting MRIs completely. Maybe the doctors I've spoken to are just overly conservative?
As others have said, regrowth is not common but it does happen. I'm with Lori - I'm not going to live in fear that my AN may regrow, but I think a periodic MRI would do me good :)
Jan
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Following my surgery and radiation in 2006, my brilliant but cautious neurosurgeon has kept me on a schedule of semi-annual MRI scans. After my next MRI (in June) I'll move to having an MRI on an annual basis for five years. Then, I'll likely have an MRI every two years, possibly five. I don't expect to ever just stop having MRI scans anytime in the near future. They're painless, (I'm not claustrophobic) don't involve radiation and can spot a re-growth early, which is, unfortunately, a small but still-valid possibility AN patients have to live with if they're going to be realistic. I'm another AN patient that doesn't lose any sleep worrying about a re-growth (especially since I've seen signs of AN necrosis on my MRI scans). Still, I prefer to be realistic and that means having MRI scans on some sort of schedule, even if that becomes twice per decade. It's worth it to me for 'peace of mind'.
Jim
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Lori: No to can't develope NFII, you either have it or you don't but until you die without developing another tumor they never will completely rule it out. There is a blood test to determine if you have the gene but there has been false negatives with that. MOST people with NFII are able to find a family member who has it or developes skin changes indicating it etc. but there are some people who don't and it's just with the developement of another AN that the diagnoses is made.