New diagnosis from Sydney Australia

[ANSydney]

Hi everyone,

I’ve just become a member of the exclusive club that nobody wants to be a member of, but everyone is so friendly.

I’ve been diagnosed with an acoustic neuroma that is “approximately 3.75cm in oblique transverse diameter, 2.4cm in oblique AP diameter and 2.1cm in the cranio-caudal height”. I’ve translated that to 2.4x2.1x2.65+1.1 IAC extension.

I’ve got about 33 dB hearing loss in the right ear, but 100% speech discrimination. There's a slight bit of tinnitus which comes and goes. I’ve also got altered taste on the right side of my tongue. Occasional dizziness, but very mild. That’s it for now. I’ll let you know how things progress.

I’ve been doing a lot of research and I’m not rushing into anything.

It looks like, once you’ve been diagnosed, the only way is down:
1)   If you choose to watch and wait you will slowly decline
2)   If you choose microsurgery, there’s an immediate hit and that’s about it
3)   If you choose radiosurgery, nothing happens at first, things get worse about 6 months to 12 months out and then things get better.

It certainly is a good thing to have a good feeling for probabilities.

My main conclusion is that it’s an information minefield.

[v357139]

Hi there sorry you had to join our club, but take heart.  There is a wealth of information here, and we can help you get through this.  Regarding wait and watch.  Some people wait and watch, and never need surgery.  The tumor does not always grow more, and does not always cause more damage.

I can be difficult to navigate the choices and come to a decision.  I myself had a hard time deciding, and I took 9 months to decide.  You've done some good research to start.  I suggest you see a few different doctors and ask their recommendation.  Best to talk to experienced AN doctors with good track records.  Best to talk to doctors that are very experienced in radiosurgery about that approach, and ones that are very experienced in surgery, about that approach.  Different doctors can have different opinions based on what they are good at.

You may also find it helpful to PM a person who has commented on this site.  Many people are willing to talk, and talking to someone who's been through it can help a lot.  Feel free to PM me as well.

[Tumbleweed]

Regarding wait and watch.  Some people wait and watch, and never need surgery.  The tumor does not always grow more, and does not always cause more damage.

The overwhelming majority of ANs do in fact grow more, so I wouldn't count on one that is already substantial in size to suddenly stop growing.

ANSydney, my experience and that of others on this forum is that symptoms typically worsen for the first couple of weeks to as long as a couple months after radiosurgery. Somewhere around the 3- or 4-month mark, it's not unusual for symptoms to worsen again. Typically by the time the radiosurgery patient is 12 months past treatment, things calm down and generally improve (although hearing typically doesn't improve, it can for the lucky few).

I'm guessing your tumor is too large along the oblique transverse axis for radiation treatments, but you should ask doctors anyway before you rule out that option. Dr. Steven D. Chang (highly esteemed Stanford Medical Center doctor) is a great resource: sdchang@stanford.edu. He will review your MRI and give his recommendation for free. Since he performs both CyberKnife and microsurgery, I regard him as unbiased as to the type of treatment he recommends for each patient on a case by case basis.

Good luck!

Best wishes,
TW

[Jet747]

ANSydney,

You list a few options...there is actually another, surgery and radiation.  The surgery is sometimes called debulking surgery.

This is the approach I took.  In a nutshell the surgery is done to drastically reduce but not 100% remove the tumor.  This gives you a good chance of retaining your hearing and minimizing some unpleasant effects if certain cranial nerves are damaged.

Your medical team then follows up in 6-12 months with radiation to kill the remaining tumor.

I'm definitely not a Dr. and don't portend to understand the idiosyncrasies of your case. 

It is just an avenue you can explore with the help of your Dr.'s.

Good luck down under!  Feel free to PM if you have any specific questions.

I have several friends that live in your beautiful country (Adelaide, Australia) and hope to visit them someday!!!

Best,
Jet

http://www.anausa.org/smf/index.php?topic=21969.0

[ANSydney]

Thanks v357139, Tumbleweed and Jet747 for reaching out. It's good to hear from people that are further advanced on this journey.

v357139, like you, I'm not going to rush into a decision.

Tumbleweed, two-thirds of acoustic neuroma tumors  don't grow, so I think it's nice to have a 6-month follow up MRI before committing to a decision. I've heard good things about Dr Chang, but health insurance in Australia won't cover such a procedure, so it is expensive. However, it may come to that...

Jet747, surgery + radiosurgery certainly has its place, however if the radiosurgeons thinks he can safely treat it, I'd rather go for one (or the other). Your 6.3 cm cystic AN would have been a good candidate for surgery followed by radiosurgery. My CPA diameter is only 2.65 cm, which still has room to grow before radiosurgeons get reluctant.

I'll fill you in on my progress, particularly my 6-month MRI which should happen at the end of February 2017.

[Tumbleweed]

ANSydney, you obviously have access to different research from what I've seen, as it's been my impression over many years that the vast majority of ANs do grow. However, I'm happy to know that you've seen contradictory -- and more hopeful -- research findings (and in fact, my hypoglossal tumor has not grown for 8 years, which lends some support to your findings, as it's also a schwannoma). As for your assertion that your tumor has room to grow before radiosurgery is not an option, my impression over the many years I've been on this forum is that CK and GK are ruled out by most doctors once the tumor exceeds 3 cm in measurement along the transverse oblique axis. If you wish to keep either of those treatments as an option, I recommend you do not wait to decide on a treatment course and get a deadline for treatment from your chosen doctor. Speaking from personal experience, ANs can have unanticipated growth spurts. (Mine suddenly grew at 5x the normal rate over a span of five months.) If you wait too long before choosing a treatment plan, your options may become limited much quicker than you think. I'm not trying to scare or debate you; just trying to help.

Just my two cents,
TW

[Tumbleweed]

ANSydney, there are two more points I think you should carefully consider. First, your AN measures 3.75 cm along the oblique transverse axis. The average growth rate for ANs is around 2 mm per year. So, your AN has likely been growing for very many years. Not to discourage you but rather to encourage you to look at your situation with eyes wide open, that your AN might suddenly stop growing when it's apparently been growing for so long is statistically not the most likely outcome. Also consider your age; I don't know how old you are, but tumors generally grow slower or stop growing in older people (whose cells don't regenerate as fast as in people who are young). I'm trying not to be pushy or indelicate here, but I really think you should accelerate your consideration of options now, before your cranial nerve functions are further compromised.

I apologize in advance if you feel I'm being too assertive here, and I realize these important decisions are yours alone to make. I waited longer than I should have to seek treatment, and I suffered irreversible hearing loss as a result. I don't want to see you have similar regrets.

Best wishes,
TW

[ANSydney]

Tumbelweed,

Thank you for your concern. I'm certainly looking at all my options, but I will not act until I know the result of my 6 month MRI. I've seen and heard of some terrible outcomes.

The main driving medical quote for me is from a paper entitled "What intervention is best practice for vestibular schwannomas? A systematic review of controlled studies" from BMJ Open dated 4 February 2103, The conclusion is:

"The available evidence indicates radiosurgery to be best practice for solitary vestibular schwannomas up to 30 mm in cisternal diameter."

My cisternal diameter is about 2.6 cm, so I've got 4 mm up my sleeve. It's a gamble, but only a small gamble. By the way, once you've been diagnosed with an acoustic neuroma, all paths are a gamble; some of them quiet scary.

I'll be checking my interpretation of cisternal diameter by consulting the Gamma Knife unit here in Sydney.

What can happen in 6 months?
1) It could grow >4 mm. This would be sad as then I may be pushed to surgery which is scary.
2) It could grow >2 mm. This would be to proceed with my preferred intervention, which is currently radiosurgery
3) It could grow <2 mm. This would buy me another 6 months to increase my knowledge base
4) It could not grow at all. More years to increase my knowledge base, but more importantly, medicine's knowledge base (eg. pharmacological solution)
5) It could shrink. If this continues, no treatment would be required.

I don't know the probability of each, but I suspect the closer to the middle of the five, the more likely they are. My 6 months MRI will tell me what is happening.

By the way, I'm monitoring my symptoms all the time including monthly formal hearing tests and daily informal hearing tests (relative measure only) using http://newt.phys.unsw.edu.au/jw/hearing.html . Any significant degradation would be cause to accelerate the decision making process. I'm also taking a quarter of aspirin a day since it may help and is well tolerated (and has other benefits).

[Tumbleweed]

ANSydney, it sounds like you know the risks and are taking them on an informed basis. The only other thing I might ask is, seeing as radiosurgery is your apparent preferred treatment course, have you consulted any radio-surgeons yet and asked them 1. if you are currently a candidate for radiation, and 2. what their cutoff is (in tumor measurements) at which point they would refuse to treat you with radiation? Seems like that would be good to know, so you're not proceeding (delaying treatment for six months) under false assumptions. Every radiation practitioner has a potentially slightly different cutoff for radio treatment, and it typically has more to do with the location of the tumor with respect to the brainstem than with a simple measurement. Some people on this forum were rejected by most radiation specialists because of their tumor size/location but then managed to find one doctor who would agree to treat them with radiation. But the options become narrower (as you already know) as the darn thing grows.

I really do wish you the best. No matter how you slice it, it's a tough row to hoe.

Best wishes,
TW

[v357139]

AN Sydney,
I'll share my experience in case it's of any help.  Mine was 2.7 when I was diagnosed.  I waited 9 months to get my second MRI.  Mine did grow to 3.5 or 3.6 in that time.  It is rare for it to grow that fast, but it does sometimes happen.  There is the 2mm average per year, and then there is also the range from no growth to fast growth (mine).  6 months sounds reasonable to me.  If you are going to wait, always good to discuss that with an experienced AN doctor, to be safe.  Also if you are going to wait, it would be good to consult with all the doctors you plan to see sooner rather than later.  Good to get as much as you can done upfront, just in case it grows fast, you don't want to have to go into hurry up mode.  I had a great surgery result, but I was a bit lucky.  If I had to do it again, I would have tried to decide sooner.

If you are considering radiosurgery vs surgery - I think it helps to talk to experienced radiosurgery experts about radiosurgery, and experienced traditional surgeons about regular surgery.  That is the best way to get the range of expert opinions on the pros and cons, in my opinion.

Let us know how it goes.  All the best.
Rich

[ANSydney]

Thanks Tumbleweed and Rich, the question of how much a tumor will grow before radiosurgeons refuse to treat it is an interesting one.

[caryawilson]

ANSydney,

You are right.. "Information Minefield".  The club is small, and so the sample size is either limited or over too great a duration.  Sounds like you got your hands on it.  I have heard of unique stories where ANs have shrunk, so I guess it may make sense to wait for the follow-up.

However, if your 6 month MRI shows "no growth", don't you still need to seriously consider treatment or else constantly worry that it may start growing anytime?  At this point, I agree no rush in making a decision on the specific treatment, but isn't the only decision to move forward with some type of treatment?   Just curious.....

I was lucky / unlucky.. At 4.5 cm, the only treatment was immediate surgery. 

[ANSydney]

Hi caryawilson,

If my 6 month MRI shows no growth then I would reset the clock. That is, go anther 6 months.

I would continue this until my age was such that it would make surgery or radiosurgery more problematic.

In the mean time my knowledge is increasing and more importantly, a pharmacological solution for slow growing tumors may come along. (What's wrong with very low dose bevacizumab ?)

I may get growth further down the track, but that would not be any different from immediate action. (There are several papers that show an initial watching period does not change outcomes.) Or I get shrinkage. The following is the abstract for "Vestibular Schwannoma: spontaneous tumor involution". Penido Nde O1, Tangerina RP, Kosugi EM, Abreu CE, Vasco MB. 2007.

The natural history of Vestibular Schwannomas (VS) is yet not totally known, but most of them have the tendency to slow growth, sometimes without any kind of symptoms during the individuals entire time. About 69% of diagnosed VS do not grow at all and 16% of these can even regress. Considering tumors that grow, about 70% have grown less than 2mm an year. Advanced radiological diagnosis, especially magnetic resonance imaging with gadolinium helps us diagnose small and less symptomatic tumors. Treatment of choice still is complete tumor resection. Surgical approaches have improved considerably and have helped preserve facial nerve function and hearing. Considering VSs natural history, there is a possibility for conservative treatment for these tumors, because their growth in the first year after diagnosis predicts tumor growth behavior in the next years. Surgery should be done in cases of tumor growth, patients desire or symptoms worsening. Moreover, in terms of postoperative sequelae, there is no difference between patients who underwent surgery immediately after diagnosis and those who underwent initial conservative treatment for these tumors.

[caryawilson]

ANSydney - Thanks for sharing.  Very informative.

[ANSydney]

Please note, "About 69% of diagnosed VS do not grow at all and 16% of these can even regress". It's a poor way to word it, but the regression rate is not 16%, but 69% of 16%, which is 11%. Still, not negligible.