Rapid Growth?

[Richard_T]

I am a brand spanking new member of this forum.   Let me first say that I very much appreciate this forum's existence and to have peers going through or having gone throught the same difiiculties to relate to.  I can only imagine that trying to go through this process without anyone that can relate to it would make this infinitely more difficult.  So, thank you in advance for being there and for adopting me.

I have been newly diagnosed with a 21-22mm AN on the right side.  Hearing is almost gone and has been determined to be unworthy of preserving for treatment option purposes.  As mentioned by others, I am going through some of the same stresses and emotions.  I am also on a bit of an information overload.  I am at the point in which I have had discussions with my local Otologist/Neurotologist and telephone consult with an Otologist/Neurotologist at the House Clinic.  As expected among experts, there is disagreement with waiting and seeing, but a general consensus in favor of surgery over radiation.  I have also consulted with a local Oncologist with a cyberknife organization.  I have appointments with another cyberknife organization and a neurosurgeon. 

My concerns are similar to others, i.e. legion.  I will continue to address them with appropriate physicians.  However, one specific question I have that I could benefit from your advice about is this:  Whether periodic MRIs as part of a wait and see or after radiotherapy, is it possible for a tumor as large as mine to rapidly grow in the interim period of MRIs to impinge the facial nerve or brain stem.  In other words, one of my chief concerns in deciding between surgery and other options is that with surgery, if none of the other risks of surgery are realized, at least the tumor is gone or so miniscule that its regrowth (if at all) would be easy to monitor before problems could re-develop.  With wait and see and radiatherapy, if the tumor decided to double in a year by rapidly growing, it could conceivably impinge the facial nerve, the brain stem or other important areas before being detected and removed.  I am sure many of you have either given this thought or may have experienced this scenario of further harm before opting for surgery.  Any thoughts are genuinely appreciated.

[CHD63]

Hi Richard_T and welcome to this forum .....

My AN was almost exactly the size of yours at diagnosis, in February, 2008.

In addition to size, consideration must be given to the specific location or direction it is growing.  With the preface that I am not a doctor, if your tumor is still entirely within the IAC, it is probably safe to wait for a period of time to do another MRI to check for continued growth.  To my knowledge, yes, there is always a chance that the growing tumor will begin impinging on the facial nerve.  However in most cases you would have facial or taste symptoms to alert you to this.

In my case, I had had an MRI (but without contrast) 14 months before (November, 2006) and there was no shadow or sign of any acoustic neuroma.  Therefore, my original neurosurgeon felt I had a rapidly growing AN (which is very unusual).  In fact three weeks after my diagnosing MRI, my AN was surgically removed and measured at 2.6 cm.  My tumor had already grown out of the IAC and towards the brainstem before surgery.  I still had 80% of my hearing so my surgeon removed it via the retrosigmoid (suboccipital) approach to save some hearing ..... which he did save 20%, which was boosted nicely with a hearing aid.  However, three years later, my tumor had grown back to 1.3 cm and was removed a second time at House Ear Clinic via translab.  This resulted in my being SSD, but I had the Ponto Pro abutment implanted at the same time and I am very happy with my bone-anchored hearing device.

So, to answer your question ..... yes, ANs can suddenly begin to grow rapidly but it is very unusual.  If you choose to watch and wait, I would carefully monitor any changes in my symptoms and report them immediately to my physician.

Best thoughts.

Clarice

[Richard_T]

Thank you very much for your information and for sharing, Clarice.

[leapyrtwins]

Richard -

anything's possible, but rapid growth is the exception rather than the norm.

I had rapid growth - my AN went from 1.5cm at diagnosis to almost 3 cm by my surgery date (approximately 6 weeks later) but no one knows why.  Guess I'm just special 

Most AN patients can watch & wait at least for a few months; and most AN docs will recommend periodic MRIs if that's what you decide to do.  However, if your symptoms get worse - or you start experiencing new ones - you may want to seek treatment sooner rather than later.

Am wondering why there is a general consensus for surgery over radiation?  The size of your AN definitely falls into the acceptable range for radiation.  Keep in mind, when gathering your information, that docs who do surgery tend to recommend surgery and docs who do radiation tend to recommend radiation. 

I'm not "pushing" radiation here, just want to make sure you are aware of this as you are making your treatment decision.

Best,

Jan

[Richard_T]

Jan,

Thank you also for your response. 

Excellent question as to why the general opinions about surgery over radiation.  The best I could get out of the docs was my relative youth (44 - I don't think I'm relatively young), which means that I have to live with this thing in my head for possibly many years and the possibilty of re-growth and related problems.  So, better to get rid of it now than to potentially deal with it later.  When pressed about whether the age issue was more related to handling surgery and anesthesia, etc., I was told that the age issue was related only logically to the issue of length of time left to lifespan to develop later complications.  However, we know that new ANs or re-growth from Schwannoma cells left on the various nerves happen.  Why would it be better automatically to remove it before radiation?  Anyway, I assume it is the statistical data re:  re-growth/other problems leaving it in for (knock on wood) 40 more years vs. re-growth/other problems from having it removed now.

I am not only aware of the radiation issue, which I seriously appreciate you raising, but I am leaning toward it as my option.  I have a few more appointments for consults left and then intend to make a decision.

It would very much help me and perhaps others to learn why you went with surgery believing your AN to be 1.5 cm and why you appear to (possibly) now be leaning a bit toward radition.  Can you share those thoughts either in this thread or via a PM? 

Thanks,
Richard

[leapyrtwins]

Richard -

surgery vs radiation is a very personal choice.  And you must do what you feel is right for you - after educating yourself on ANs, talking to as many docs as you feel you need to, looking at the pros & cons of each type of treatment, etc.

I was lucky enough to have a neurotologist who does both radiation and surgery, and in my case I was a candidate for either.  I asked my doc to make the decision for me, but he flat out refused.  Pissed me off at first, but ultimate I greatly appreciated this.  After weighing both my options, I decided that surgery was my best choice - although originally I told my doc that there was "no way I was having surgery".  Never say never 

I chose surgery because I just wanted the tumor out of my head.  I wanted to know it was gone (surgically removed) not just hopefully dying (from radiation).  I wanted to get on with my life; I wanted less follow-up after the procedure.  My doc has surgical patients get an annual MRI, whereas his radiation patients usually get more than that - especially until it's obvious that the tumor is dying.

I'm a certified control freak and I'm also a worrier.  I knew if I left the tumor inside my head that I'd attribute every headache, ear twinge, etc. to a growing tumor - whether that was a reality or not. 

I also like to meet things head on and decided that I wanted to know what side-effects I'd end up with ASAP so that I could deal with them.  My doc told me that with radiation I might not experience side-effects for 12-18 months post treatment.  I knew with surgery I'd know much sooner what I'd be facing.

I honestly probably also gave some consideration to the fact that the woman in the waiting room who had the appointment after me was there because she had tumor regrowth after radiation (with a different doc, not mine - although it can happen to anyone regardless of doctor).

I'm also probably strange in the fact that I couldn't fathom having a metal frame screwed into my skull with just local anesthestic for the GK treatment, yet I had no issue having a "window" surgically cut into my skull and then replaced because I'd be asleep.  I remember my doc laughing at that logic. 

Nine months later I went on to have a titanium rod implanted into my skull (for a BAHA) while wide-awake with local sedation.  Same doc.  I'm sure he appreciated the logic in this also 

Surgery was a great choice for me - and even more so when I woke up and my doc told me my tumor ended up being too large to radiate (his threshold is 3 cms) - but it's not for everyone.  Those who have chosen radiation are generally just as happy with their choice - so I wouldn't say I'm "leaning a bit toward radiation".

I'm actually leaning towards whatever is right for you and I just want to make sure that you cover all your bases.

As for your age I don't think it's a factor - I was 45 1/2 at the time of my diagnosis and I was given the option of radiation.  Lots of docs who don't do radiation don't understand everything about it and often don't really know who is a candidate; lots of misconceptions from the "old" days before radiation was more widely used.

That said, usually size and location are the 2 factors that decide if radiation is a good idea for an AN or not.

Regrowth can happen with radiation or surgery.  I don't know the statistics on radiation growth, but regrowth after surgery where it's believed the entire tumor has been removed is 1-2%.  I say "where it's believed" because AN surgery is done through a microscope (looking through that "window" I mentioned earlier) and the tumor is peeled away layer by layer.  Docs do their best, but even one cell left behind has the potential of regrowth.

Sorry for the long response,

Jan

[Richard_T]

Thank you very much, Jan for sharing.  Your experiences are invaluable to me.  I thank you all for the excellent advice you have given me thus far.

[lrobie]

I would like to add that I was seen by a radiation oncologist at the Cleveland Clinic recently who said he would not recommend radiation for me at the age of 45.  He said that there isn't enough research to know whether you will end up with a malignancy from having radiation.  I believe someone pointed out in an earlier post that there isn't any evidence of this now.  However, we don't know what the future will hold and whether we will begin seeing patients, who've had the radiation, diagnosed with brain cancer.  I lost my father-in-law from brain cancer last year and it's very scary.  I'm not trying to scare anyone into not having radiation.  If I were to decide on radiation, the possibility of malignancy would always be in the back of my mind.

I'm still in the midst of research before making a decision.  I sent my MRI's to House this week and have a follow-up appointment at UPMC on February 7th.  Ugh!!   

Lisa

[Jim Scott]

I would like to add that I was seen by a radiation oncologist at the Cleveland Clinic recently who said he would not recommend radiation for me at the age of 45.  He said that there isn't enough research to know whether you will end up with a malignancy from having radiation.  I believe someone pointed out in an earlier post that there isn't any evidence of this now.  However, we don't know what the future will hold and whether we will begin seeing patients, who've had the radiation, diagnosed with brain cancer.  I lost my father-in-law from brain cancer last year and it's very scary.  I'm not trying to scare anyone into not having radiation.  If I were to decide on radiation, the possibility of malignancy would always be in the back of my mind.

Lisa ~

This is an oft-repeated claim by doctors that has dubious value, in my opinion.  Gamma Knife has been used since 1988 and there is no evidence that GK patients have developed brain cancer due to the use of this technology.  I underwent FSR and have no concerns about developing brain cancer.  However, your family experience with brain cancer is - understandably - affecting your views on radiation.  Frankly, if you have concerns that deep about radiation, I certainly wouldn't advise you to consider it because you have to have full confidence in both your doctor(s) and your method of addressing your AN.  Being fearful that the treatment will eventually give you brain cancer isn't going to give you that confidence.  Just know that many of the claims about radiation are based on outdated information and, in some cases, doctors prejudices, which just proves they're human.

Jim

[leapyrtwins]

I agree with Jim.

Radiation gets a bad rap sometimes and I don't think it's deserved.  Lots of outdated information and prejudices out there.

Jan