60% of AN's have no growth

[cont1592]

I am In the W&W mode with a 14mm AN.  My doctor's advice is to check for growth with yearly MRI's.   My first MRI was back in February and I will have another in December.  He' s indicated that 60% of AN's have no growth.  And since the tumor is attached to the nerve, both surgery and radiation have a chance of damaging your hearing nerves and causing total hearing loss.  My hearing is now at 60 to 70% in my AN ear and the ringing is steadily increasing.  My doctor has indicated these symptoms do not necessarily mean the tumor is growing.  He firmly believes that W&W is the best approach with the best outcome being the AN never grows.  I am new to all this and that seems to be a daunting solution, to W&W.

I am an engineer, and my personality is to identify the problem, plan a solution, and execute.  So it is hard for me to imagine sitting and waiting for years.  I guess if it does grow, then I won't have a choice, I will have to do something about it.

Is anyone else out there in a similar situation?  How are you doing? And dealing with this?

[Echo]

Welcome to the sometimes difficult world of living with an AN! 

It's not uncommon to wait up to one year after initial diagnosis for a second MRI to determine if your AN has any growth.  Take this time to do as much research as you are comfortable doing.  Learn about the different treatments and consider how you feel about each one.  Keep in mind that AN's can grow and that they do not always grow slowly.  I was diagnosed with a 1.8cm AN and within 10 months it had reached 2.4cm.  Thankfully I had done plenty of research during those 10 months, so with increased symptoms and signs of growth I was ready to move forward and I knew which treatment I wanted.  My choice was Gamma Knife.

AN symptoms can change without the AN growing or the AN can grow without you experiencing any change to your symptoms.  As your AN grows and becomes larger, your percentage of risk for complications tied to your treatment can also increase.

Do yourself a favor, and keep researching, line up a few more consults to compare notes, and follow your gut feeling.  I suspect as an Engineer and your post below, that you will want to do something sooner than later.  While W&W is a great option, not everyone has the personality to manage the W&W approach.   Even within treatment options, personalities form a big part of the decision.  Some folks just want the darn thing out of their heads, others like me prefer a less invasive approach and opt for radiation.  It's a personal choice and not an easy one to make.

One last tip - make sure whomever you choose to take care of you is very experienced in dealing with AN's.  These can be complicated little aliens that are best treated by specialists with lots of experience.

Best of luck,
Cathie

[john1455]

Be aware that W&W is a double edged sword because according to Dr Steven Chang at Stanford, there is no correlation between symptoms and tumor size and/or whether there is tumor growth or not. Since pre-treatment symptoms are likely to remain after treatment of the AN, whether it be surgery or radiosurgery, there is a certain amount of risk in waiting because one never knows what symptoms will pop up and when. I unknowingly placed myself on W&W for over 15 years because I ignored the classic symptoms of an AN (tinnitus, single sided hearing loss) thinking they were the result of an occupational hazard (I'm a retired dentist). I also had perfect health until I was suddenly hit hard with severe disequilibrium and 3 days of dizziness that kept me bedridden when my AN (aka tommy tumah) decided to make its presence known in January 2013. By the time I was diagnosed, 70% of the hearing in my right ear was gone. I do not expect any of my hearing to return or improve. My biggest problem is the minor balance issues I am still learning to cope with.

I was actually glad that I was diagnosed with an AN because now my problem had a name. Now that I knew what it was I could address the problem. The first step was to find out as much as possible of all the treatment options available and what the side effects were and which ones I was willing to live with at 64 (65 now). W&W is a viable option but all those who choose to do so need to realize that no growth does not necessarily mean all will be well. I see it as a ticking time bomb.

Two websites that helped me tremendously in deciding on a treatment option were http://www.myacoustic.org/
and https://www.youtube.com/watch?v=ZbS4K9ENMAg. Check them out if you haven't already. Also read as many posts on this forum as possible, especially those that describe post treatment side effects and what the poster went through as a result of their treatment choice. This will guide you on your AN journey. I am about 2 months post CyberKnife (aka CK) and feel the same as before treatment. I had zero recovery period and no disruption in my daily activities. You should be aware that the major goal of radiosurgery is stopping tumor growth and if you get AN necrosis, then that's an added bonus. However, that does not happen right away so there is no such thing as immediate gratification. It may take up to a couple of years to see definitive results. Radiation also causes tumors to swell and that is normal. I have been told that swelling usually happens around 2 months post treatment but so far I have not experienced any symptoms that indicate I have swelling but time will tell. In your case, the ideal situation would be to monitor your AN with regular MRIs and catch any growth before any symptoms appear (like hearing loss, tinnitus, and balance problems). Keep in mind that AN treatment is not like most medical treatment in that symptoms you have before being treated will not likely go away and may be permanent. However, there are cases where the patient has had an AN with no growth and no symptoms and that is the ideal situation but I have only come across very few such cases in my AN research.

[Tod]

It is quite an interesting statement, "60% of AN's have no growth."  Okay, from what point? Clearly they grew to the point of diagnosis. Did diagnosis or something else cause them to stop growing at that point? I would like to believe that MRIs cause them to stop growing, but anecodotally, that does not seem to be the case for me as mine started growing again after surgery and eight MRIs.

I'm not sure this is a statement I would bank on, especially as my tumor got to be about the size of a golf ball.

Wait and watch can be a good alternative for many people, but for others not so much.

-Tod

[sandyinwisconsin]

I'm 44 with a 1 cm tumor, and I had it radiated to HOPEFULLY stop the growth.

If tumors grow 1 mm a year, yours could have been growing 14 years.  If you plan to have radiation,
I think the smaller the better. 

Dr. Dave Andrews, who does fractionated radiation to help preserve hearing, said early intervention
is the best for fractionated radiation. 

Sandy

[rupert]

At 14mm watch and wait is an option but, might not be the best. Just my opinion.  Of course you don't have to rush.  Use the time to research treatment options. Get several consultations.  More than likely your hearing will get worse no matter what you do.  That's just the nature of these things.  14mm is not small and would be considered medium. I think if you look through the forums you won't find anyone who says they wouldn't have liked to find out sooner,   meaning smaller.   Again, I give the watch and wait crowd a lot of credit but, very few go on for long without treatment.   Treating AN's when smaller with  surgery or radiation  will generally involve less complications. 

[arizonajack]

My AN was 9mm x 4 mm x 3mm when I had my first MRI in April of 2012. 90% of my hearing in that ear was already gone. My next MRI was October of 2012. The AN had grown to 11mm x 4mm x 4mm, a growth of 20% in 6 months and my hearing in that ear was 100% gone. I opted for radiation and had Gamma Knife in January of 2013. Since then (other than the forever single sided deafness and very mild tinnitus) I've been relatively symptom free.

Based on my experience my prediction is that you are likely to experience greater loss of hearing by December along with other exacerbated symptoms.

I suggest another MRI in June or July along with another audiogram to monitor the hearing loss. You might be destined for single sided deafness one way or the other but there's a lot of other things that can go wrong thanks to these "benign" invaders.

[cont1592]

Thank you all for your responses.  I have put together a fact sheet of the history of my condition and have presented it to another medical center for consultation.  My current doctor is an expert in this field and highly recommends observation - but I would like to see what other specialists have to say about it.  For me, to just sit back and hope for the best while the ringing gets louder and my hearing gets weaker is difficult.

Has anyone in W+W been prescribed a steroid?  This past weekend I had a sudden increase in ringing and decrease in hearing.  My doctor's response was to take a steroid to "help reduce inflammation on the nerve".  I am not sure what to expect if anything.

[PaulW]

There are studies beginning to appear indicating that proactive treatment with Gamma Knife may provide better hearing preservation than Watch and Wait. There also some papers on pubmed showing AN's that are growing outside the IAC like yours are more likely to grow.

Have a read of these links.
http://www.ncbi.nlm.nih.gov/pubmed/21121792
http://www.ncbi.nlm.nih.gov/pubmed/22682708
http://www.ncbi.nlm.nih.gov/pubmed/22937934

One of my Local doctors had a very strong opinion on W&W as the preferred management option.
In the last 6 months he has changed and his patients are now increasingly being proactively treated with Gamma knife to preserve hearing.

www.pubmed.com is a wealth of information, although it can be scientific and full of statistics which need to be interpreted.

There are quite a few papers showing that hearing preservation is strongly related to Cochlear Dose, far more so than fractionation.
Therefore choosing the most accurate equipment and experienced operators is very important to reduce cochlear dose.


As for fractionation there appears to be some very slight advantage in hearing preservation however it comes at a cost, and probably applies more to larger tumours more than smaller ones and has yet to be definitively proven.

There is a thing called the alpha/beta ratio.
Its how tumour and healthy tissues behave after radiation.
With Acoustic Neuromas the alpha/beta ratio is such, that fractionation is not as effective as other tumours in preserving healthy tissue.

There is also diminishing returns with each fraction for preservation of good tissue.
So if fractionation helps..... and that is still debatable with AN's, going beyond 3-5 fractions may provide negligible benefit while exposing the patient to increasing amounts of radiation.

Each fraction means your total exposure to radiation increases. there is also radiation leakage from the equipment and scattering of radiation from your head, the equipment and the room.

This is why radiation oncologists try to reduce treatment times to reduce radiation exposure to the rest of the body.
These doses are significant and do add to your lifetime cancer risk

Single session radiosurgery is typically provided in a single dose of 13Gy while 25 sessions of Radiotherapy is typically 50Gy

Its been nearly 4 years since I was treated with Cyberknife and I still have my hearing and life goes on like normal..

I chose to have radiation done proactively to preserve my hearing, my second choice would have been W&W.
If I was deaf I probably would have chosen W&W until significant growth was detected, then radiosurgery

The amount of radiation you receive is proportional to the volume of your tumour also, another reason to have the tumour treated sooner rather than later.

Please do your own research, the above is my personal opinion, I am not a medical professional.

[Sheryl]

I have a tumor on my 9th cranial nerve although was told that things are so close in there that it could be affecting my 8th (acoustic) cranial nerve.  I have no symptoms from either nerve - the 9th would cause swallowing problems and hoarseness.  In November of 2001, the tumor was found incidentally when I had a bad headache (blood pressure was the culprit).  I have been a knowing W&Wer since then with about 4 to 5 mm of growth in almost 13 years.  Some opinions say the 9 mm found on the original MRI should have read a bit larger.  My yearly MRI's are done religiously. 

W&W is not for everyone.  I have been able to put this out of my mind and get on with my life. 

Good luck in your decision making -
Keep us posted,
Sheryl

[cpchri1]

Cont1592 -  I obtained consultation from different doctors in my quest to address my AN.  I had lost 50% of my hearing when I got the diagnoses of the AN at the end of 2013.  I went to different doctors and just like this website, one of the doctors recommended observation, another recommended radiation, and another recommended surgery .  I read a lot of papers and made myself a pro and con paper for each recommendation (for my personal situation).  Each of these options have pros and cons and it all came down to finding a team of doctors who had MY interest at heart, didn't push me into one way or another, and left the decision to me.  I just happened to have an MRI from just a few years before and the tumor was not present (I shared this MRI w/contrast to the doctors).  So I had some indication of it's growth and I was losing my hearing.  I'm also an engineer and I don't like to run systems to failure so I made the decision for surgery so additional nerve damage did not occur on my body.  I ended having surgery, kept my remaining hearing, I don't have facial issues, and the tumor is gone (I am still rehabilitating vestibular balance).  But in the end it's my body, not the doctors and I recommend that you don't stop at one doctor/team but seek consultation from multiple sources.  Many have free phone consultations (USC and House are examples) to start.  Office visits for a consultation are worth it.  I traveled out of my state for two of the consultations.  If you find a doctor who insists on one method of treatment find another.  Look for a doctor who can answer your questions without telling you what to do (recommendations are ok).  I would also ask the physician for the documentation on the 60%.  He/she should be able to provide you with a medical paper to back this up (I've read many medical papers on AN and never have seen this statistic-the actual statistics seem to be all over the map in many situations).  If they don't respond well to your questions (some doctors don't like to have questions) I would seek additional consultation.  It's so empowering to do the research, talk to the medical experts (and especially refreshing to find a providers who are not offended by questions  or responds with 'I will consult my other team members because I don't know').  But in the end make your own decision with family/friend support. W&W may be best for you but be careful on how much time you wait on your next MRI (I don't know if I would wait an entire year for the first follow-up MRI; usually the initial follow up MRI is done in 3 months, then if no growth MRI in 6 months, then a year from initial). I know a W&W friend who has an MRI that went from 1 cm to 2 cm in a year (and while that is not the normal these AN's growths are not all normal!).  I hope these thoughts help you.  It never hurts to get second and third opinions.   Best to you!  Craig

[keithmac]

Cont1592 -  I obtained consultation from different doctors in my quest to address my AN.  I had lost 50% of my hearing when I got the diagnoses of the AN at the end of 2013.  I went to different doctors and just like this website, one of the doctors recommended observation, another recommended radiation, and another recommended surgery .  I read a lot .......itional nerve damage did not occur on my body.  I ended having surgery, kept my remaining hearing, I don't have facial issues, and the tumor is gone (I am still rehabilitating vestibular balance).  But in the end it's my body, not the doctoe rs and I recommend that you don't stop at one doctor/team but seek consultation from multiple sources.  .......ing to find a providers who are not offended by questions  or responds with 'I will consult my other team members because I don't know').  But in the end make your own decision with family/friend support. W&W may be best for you but be careful on how much time you wait on your next MRI (I don't know if I would wait an entire year for the first follow-up MRI; usually the initial follow up MRI is done in 3 months, then if no growth MRI in 6 months, then a year from initial). I know a W&W friend who has an MRI that went from 1 cm to 2 cm in a year (and while that is not the normal these AN's growths are not all normal!).  I hope these thoughts help you.  It never hurts to get second and third opinions.   Best to you!  Craig

I've just joined ANA and I am looking through the info. on this website.  The section in your quoted posting (bold and underlined) rang true for me. 

I'm a Brit and healthcare here comes from our tax-funded NHS.  We're referred to hospital by our GPs and specialists there deal with us.  There's no charge for any of this but we don't get much choice who we see. 

Last summer my AN was detected, a second MRI with Gadolinium in early fall confirmed its size.  My specialist recommended W&W and an anniversary scan in 2014.  I was relieved I didn't need immediate treatment because we spend winter in AZ and our trip could then go ahead as usual.  But during the winter there I began to think the next scan should happen sooner to get a (potential) growth baseline.  Waiting for a year seemed too long even though we're assured that these little monsters usually grow slowly... yeah, right! 

I reasoned that  if there were any significant growth it would still be discernible before a year was up and I requested my scan be brought forward; that way I'd know the worse or the better and plan accordingly.  I'm presently waiting for the report of my May 1 scan - slow, huh?

It's good to 'hear' your thoughts.

ps May 29 - Greatly relieved to hear from radiology that my tumor is unchanged from last fall.  I'm expecting/hoping for a recommendation of 12 more months of W&W and that's fine by me!

[Mickey]

Hi cont1592....  Iv`e been W+W for 7 years now this month 1cm AN "stable". Personally, I think everyone who fits the right guidlines should give it a chance. If that may be your decision, please take a pro active stance to feeling better. We have a "W+W Brigade board here with alot of valuable information to get you started. I`m actually feeling better than when first diognosed and living a pretty normal lifestyle. Wishing you the best, Mickey

[keithmac]

Thank you all for your responses.  I have put together a fact sheet of the history of my condition and have presented it to another medical center for consultation.  My current doctor is an expert in this field and highly recommends observation - but I would like to see what other specialists have to say about it.  For me, to just sit back and hope for the best while the ringing gets louder and my hearing gets weaker is difficult.

Has anyone in W+W been prescribed a steroid?  This past weekend I had a sudden increase in ringing and decrease in hearing.  My doctor's response was to take a steroid to "help reduce inflammation on the nerve".  I am not sure what to expect if anything.

The circumstances you outline in your second paragraph are exactly similar to the ones that sent me to my own doctor.  When I saw a specialist in ENT that he said he would have prescribed a steroid treatment (something I'd later learned about online) had he seen me earlier but by then it was too late for it to be effective.

Prior to the sudden noise and hearing loss last summer the noise from tinnitus in my affected ear had been pretty steady (as best I could judge)  since 2009 and I hadn't noticed any hearing loss.  It's impossible to know now, of course, but I fancy those symptoms were not down to the AN and had I not had them I probably wouldn't have been MRI scanned and diagnosed. 

Now I know I have an AN I'm contented to remain on Watch-and-Wait while nothing is changing for the worse.  With any form of treatment there's a consequent risk of problems which right now I don't have.  As individuals we react in different ways to our shared condition.

[KeepSmiling]

My husband is also an engineer.

Although acoustic neuromas are thought to be slow growing benign tumors, we believe that the growth of his acoustic neuroma may have been more rapid than is usual. His hearing loss happened during a short span of time. He went from minor hearing loss (first noted by an otolaryngologist September 2009) to complete deafness (deafness diagnosis: November 2012.)  For this reason we intensely researched medical solutions for him, since we wanted to prevent more potential damage. We met or talked on the phone with at least a dozen doctors, all of whom had encouraged us to "watch and wait." We repeatedly rejected the "watch and wait" approach. We were very concerned with mitigating risk.

Another subject- maybe off topic---on how we decided on the treatment...We focused on clinical studies. (A great source of info:  http://www.ncbi.nlm.nih.gov/pubmed/ )We scheduled dozens of telephone conversations with the kind and caring ANA Proton Therapy patients at this Acoustic Neuroma forum. (THANK YOU)  After some time passed, Proton Therapy emerged as the best match for us. We considered how it is gentle enough to be used on thousands of children who have cancer and on people with tumors in eye tissue, which is a very delicate area. (You may want to watch this recent video: http://www.youtube.com/watch?v=8Of8FmaDqT8 ) We visited and talked to the doctors at several Proton Therapy Centers and decided on Proton Beam Treatment in California only to hit a wall of repeated insurance denials.  We continued our quest and in late May of 2013, a wonderful staff member who handles Insurance issues at the Francis H. Burr Proton Therapy Center told us the happy news that our insurance for Proton Beam was approved, which we believe indicated that the MGH staff has superior experience in treating vestibular schwannomas. We asked the staff at MGH hard questions about the range uncertainty issues that have been cited here at this discussion forum about Proton Therapy and we were satisfied with the response they gave. My husband has a masters in mechanical engineering and he had a deep appreciation for the physics behind proton therapy.

Again, maybe off topic (I apologize)--my husband's current outcome: Now we are celebrating the fact that my husband's first annual  MRI shows there is a darkened area on the inside of the tumor, indicating that the blood supply to the tumor is significantly reduced. He luckily had no side effects from the Proton Therapy during last year.

This journey has not been easy. The logistics and expense were a risk.  It is good that this group of fine individuals at this discussion forum are here to help each other with these far-reaching decisions. It helps us  to know that we are all in this together.  Whatever you decide, we wish you the very best.  You are not alone.  We are here to help. You are in our thoughts.