Tumour size

[kiwi]

Hi

Just wondered how big is a big tumour.....I have not seen my new specialist yet so I am scared.  I have a 4cm tumour in my left ear, and a lot of people on here have smaller ones.  I am really starting to panic now.  What will be my side affects of surgery?  Has anyone had bigger or same size??

[mssophy]

It's okay to panic. I certainly did.
While your tumor is considered large, there are many people who have had such and are doing fine.
Request the general information from the ANA. It helped me so much!

[kiwi]

I read something in my research that says tumours grow at 1.5mm per year...not sure how true that is but I worked it out and mine could be 26 years old!  Im only 38.  I wonder how true this is

[Louise UK]

Hi Kiwi, Im 27 and my AN was over 4cm, which is a biggie! I came out of surgery SSD, still had tinnitus, which I expected. But I didnt have any facial probs, this was due to the fact that some of my AN was left behind to preserve the facial nerve. Ive recently had the remaining bit treated with GK. There are a few people on here that have had their AN treated in the same was as this, maybe this two treatment approach would be suitable for you.

Louise. x

[texsooner]

Kiwi, my AN (3.5 cm) was close to your size and I came out of surgery in pretty good shape. Others will chime in with AN's as big (and bigger) as yours, and many have had good outcomes. While 4 cm is a large AN, no need to panic....it should be treatable. At your age (and assuming you're otherwise healthy), your odds are very good that you'll recover well after it's treated. You'll get plenty of advice, but meeting with doctors that are very experienced in AN surgeries is key.

Patrick

[epc1970]

Kiwi
My tumor was 3.8 cm and I am doing just fine. I totally understand how upsetting it is to hear that you have such a big tumor-it's bad enough to learn you even have a tumor but then to hear it is so big....the biggest thing is that the larger AN's limit your treatment options to unsually surgery or surgery/with radiation after most of the tumor has been surgically removed. Take care to find a surgeon who is expirenced with AN treatment.
Erin

[Jackie]

Hello Kiwi,

I just wanted to welcome you and to let you know that your tumor is not the largest one recorded as somebody on the forum had an 8CM AN removed surgically! While yours is not considered small, it is absolutely necessary to be treated by only very very experienced Doctors. That is probably the best advice you could heed. Depending on where you are, you may be near some that are tops in their field, that is what research is all about! There is a wealth of knowledge here on this forum so just ask your questions. Wishing you the very best
Jackie

[Pooter]

Kiwi,

Welcome to the forum.  It's okay to be scared.  Even someone who's told they have a really small one is scared at first because it's the unknown for most of us.  Mine was 3cm which was considered "large" also.  In just about every way, I had a stellar outcome.  Sure, there were some bumps in the road, but overall I've had a great outcome.

As others have alluded, I think a two-stage treatment where the tumor is "debulked" and then the remainder is radiated would be a possible option to explore with your doctor.  Many people with "large" tumors have reported that their doctor used this two-stage approach and have had great success in both removing the tumor (and then stunting the growth of the remainder) and having minimal to no negative after affects.

As Jackie said, there are some others with the same size and larger tumors.  You will be okay.  You will learn to adapt to whatever side affects (if any) you have after the surgery.  And, we'll all be here to help you.

Regards,
Brian

[Jim Scott]

Just wondered how big is a big tumour.....I have not seen my new specialist yet so I am scared.  I have a 4 cm tumour in my left ear, and a lot of people on here have smaller ones.  I am really starting to panic now.  What will be my side affects of surgery?  Has anyone had bigger or same size?

Kiwi ~

I'm sorry you've been diagnosed with an acoustic neuroma but this is a treatable condition and most AN patients do O.K.  I don't know if there a 'standared' but as I recall, a "small" AN is less than 1.5 cm, a "medium" AN is 1.5 - 3 cm, and a "large" AN is 3 cm or greater, so, yes, you have a big tumor.

I was diagnosed with a 4.5 cm AN (in 2006, when I was 63) and subsequently underwent surgery, with no complications, and three months later, FSR (radiation), again, with no problems.  My symptoms (dizziness, fatigue, loss of taste sensation, stabbing pain at the AN site) all disappeared following the surgery and I was driving again within 2 weeks.  My overall recovery was excellent.   I consider myself blessed - but my case is far from unusual.  Many of our members have a similar story. 

Although no one can guarantee the exact result of any individual's AN removal surgery, the chances of a good outcome these days are excellent.  Frankly, I suspect that patients with bigger tumors sometime do better than patients with very small tumors, in terms of effects from surgery/radiation.  However, that is just supposition on my part, not a guarantee. 

Please try not to panic.  We're here to inform and support you, so feel free to use the forums as a resource.  Our members are friendly, compassionate and eager to help another AN patient. 

Jim

[kiwi]

Thankyou to those that have replied....I feel some sense of calm now.  I am hoping that my balance problems will disappear asap after surgery as I am quite sporty and I am finding it hard to watch everyone else carry on life as usual while I am left sitting on the sideline not even being able to walk without my partner or my sister to guide me in a straight line!!  Once again thanks for setting my mind at ease somewhat...

Jacqui

[Nickittynic]

Just wanted to add myself in as one with a "large" tumor who actually had the whole thing removed surgically. At least, this is what I'm told as I haven't seen the post-op MRI myself. So it is possible!

[leapyrtwins]

Kiwi -

as others have mentioned 4 cms and greater is considered large.

We have a lot of forumites who had 4 cms or larger.  The largest so far is Satman who had an 8 cm AN.

Jan

[kiwi]

My main reason for asking about size is because I just wanted to know what side effects are to be expected when AN's are considered large.

[Pooter]

The possible side affects are just as they are for any surgery patient.

They include balance issues, facial weakness or parallysis, eye problems (mainly dry eye due to facial weakness/parallysis), headaches, loss of taste / changed taste, single-sided deafness, meningitis, stroke, etc..

But, I doubt that any of them are significantly higher rate of risk than someone who has a small AN. 

Personally, I think you should be mindful of the possible side affects, but don't be consumed by them because you may or may not experience them after surgery.  Many side affects are short lived and will pass within a relatively short amount of time.

Like you, before my surgery I wanted to know everything that COULD go wrong with surgery and the outcomes... How long would I be out of work?  How quickly could I drive again?  Etc...  You'll drive yourself absolutely NUTS with the possibilites and the likelihood that you'll experience any or all of them are relatively low (except maybe SSD which is pretty high possibility).  You'll learn after surgery that you take things as they come, you take them slow and you learn to adapt or work through them.  The recovery time for after surgery is PAINFULLY slow at times; at least it was for me.

Try to remain relaxed and confident going into treatment.

Regards,
Brian

[notnowkato]

Hi kiwi - are you in New Zealand or is that just your screenname?

I have not had my surgery yet so cannot yet tell you what my outcomes will be, but my understanding is that you can't expect things too much as every single case is different. As I have read around this forum I have realised that there are some people with large AN's who had fantastic outcomes and others who had small AN's who have had more to cope with post-treatment. I think it is important to find a surgeon experienced in treating AN who can help achieve the best outcomes possible for you, and after that it is just down to what the tumor is like which they often can't tell in advance.

Having said that, I think that tumor size has more influence over some outcomes than others. For instance I believe it is a determinant of whether hearing preservation is attempted and it has some correlation to the likelihood of good facial nerve outcomes, but for things like the generic risks associated with major surgery, size makes no difference. Other people who have been members of this forum for longer may want to correct me if I have got this wrong. Your specialist should be able to tell you what their outcomes have been in previous patients who had AN's a similar size to yours and underwent the type of treatment they are recommending for you.

I think Brian's post is great - I am going to try taking his advice myself! I wanted to know about all the possible outcomes but keep telling myself that some of them really are uncommon (irrespective of the size of the AN) and I am unlikely to end up with absolutely everything on that list. In other words it's never going to be as bad as my overactive imagination.

Good luck with meeting your doctor and take lots of questions,
Kate