SIZE dictates treatment options?

[smallersucker]

Hi I'm a newbie here as I was diagnosed less than a month ago with 4cm AN (mid-sized or large depending on who you talk to) 

The search for the best treatment has proven a bit frustrating  as there are a number of sometimes mutually exclusive options. I strongly believe that most physicians are sincere when they advocate one form of treatment over another. It is just that these newer technologies are developing everyday and it is not easy even for these physicians to keep abreast of the latest developments. Plus, the newer developments still have to pass the test of time.

Patient accounts on the other hand, while undeniably sincere, tend to be written in different eras (therefore with newer technologies in different stages of development) AND MORE IMPORTANTLY, refer to different AN sizes. From what I have learned so far, it appears that size is a big issue in the treatment-choice decision. For instance, a patient who had a 2.5cm AN might speak passionately in favor of GK, perhaps without realizing that going straight into single session radio-surgery is not even an option for patients with larger ANs.

My question is, and any input would be very much appreciated, is FSR a good option for larger ANs such as a 4cm one? Jim, if you're listening, any regrets on having to go through de-bulking micro-surgery before your FSR? With what you know today, do you feel you could have gone straight to FSR? Thanks!

[leapyrtwins]

Hi, newbie 

Welcome to the Forum!

I'm definitely not Jim - heck, I don't even know all the big words he does    but since there are so many posts on the forum lately, and also because I'd like to hear Jim's answer to this, I've taken the liberty of sending him this link in a PM.  Hope you don't mind.  I'm sure he'll be posting a response shortly.

I don't know a lot about radiation beyond the basics, but debulking large ANs and then radiating them is being done more and more each day.

Jan

[CHD63]

Welcome to our exclusive world, "bigsucker" ......   

Sorry you have an AN and Jim is your authority on debulking/radiation, but I do want to add my welcome.  You will find this group very caring and supportive as you walk through your personal journey with an AN ..... so keep posting and asking.

Clarice

[sgerrard]

My impression is that no form of radiation treatment is recommended as the sole treatment for an AN over about 3 cm. FSR has been tried on ANs larger than that, when surgery is not possible, but the results are not encouraging. At that size, the total amount of radiation required is quite large, and the risk of swelling creating a serious problem with the brainstem is very real. "Big suckers," as you so eloquently put it, usually have large blood vessel involvement as well, and surgery is the only way to untangle them. Debulking with surgery, then radiating to polish them off if needed, is the way to go.

Welcome to the forum from me, too.

Steve

[Jim Scott]

Hi, Bigsucker ~

That's an attention-getting screen name. 

To answer your question: no, I have absolutely no regrets about undergoing the de-bulking procedure prior to FSR.  Of course, I had a very experienced, highly skilled neurosurgeon doing the debulking and he was keenly aware of the fact that I did not want to lose facial mobility (my hearing was long since gone in the affected ear).  That's why he recommended de-bulking and radiation....to help spare the facial nerve.  He was completely successful.  I did not lose any facial mobility.  My radiation oncologist was a whiz, too.  Very sharp and a lot of experience with acoustic neuromas.  My neurosurgeon's plan was to de-bulk the tumor to, in his words: "cut off it's blood supply and hollow it out" making it much more amenable to the effects of radiation.  He cut it down from almost 5 cm to approximately 2.5 -2.8 cm (hard to tell, exactly) and as my signature notes, this has worked out quite well.   The neurosurgeon and radiation oncologist worked as a team and claimed they had never seen a re-growth (in 5 years) using this approach.  That sealed it for me.  As others have stated, the de-bulking and radiation model is becoming fairly common for large ANs.  It worked for me.  However, as you seem to realize, any AN patient's experience (including mine) is from their unique perspective and thus, not necessarily objective.   The reality remains that there are no guarantees and you have to go with your 'gut instinct' based on the research you do and the information you're able to accumulate.  I trust this helps answer your question.

Jan ~  Thanks for the PM that alerted me to 'bigsucker's' post

Jim

[leapyrtwins]

My impression is that no form of radiation treatment is recommended as the sole treatment for an AN over about 3 cm.

I'm with Steve on this one.  I've never heard it recommended for an AN over 3 cm either.

Jan

Jim, you're welcome.  Thanks for responding so quickly 

[moe]

Bigsucker,
Sorry you had to use this as your signature, but you can always change it down the road!
Yep, surgery with debulking like Jim said sounds like the way to go.
Now comes the question- which approach, depending on the location (and the doctor and which approach they have the most experience with).
Let us know what your surgeon says. I would guess this sucker is coming out sooner than later??
Lots of good ears/advice here with many different experiences, so ask away
Maureen

[smallersucker]

Thank you all for your prompt and warm responses!!

It is reassuring that the reponses share a common line of thought, which is also consistent with what I have come to believe.

Thanks!!

[Kate B]

Welcome to the forum!  Others have given you great information. 

Have you seen any doctors yet?  What have they shared?

Kate

[smallersucker]

So we'll take the golden AN,
and remove as much as we cAN,
then we shoot what's left with some rays from the doctor mAN...
Afterwards, I hope I can still drive the tAN vAN;
That's the plAN!

 

[CHD63]

So we'll take the golden AN,
and remove as much as we cAN,
then we shoot what's left with some rays from the doctor mAN...
Afterwards, I hope I can still drive the tAN vAN;
That's the plAN!

 

Love it!  How clever and informative at the same time!  Thanks.

Clarice

[Sheryl]

Hey Bigsucker - glad to see you still have your sense of humor - definitely needed through this journey 
Sheryl

[smallersucker]

9 days after surgery to debulk, I feel the operation went beautifully and I have no losses whatsoever.

But I do have a maddening case of the hiccups. Am at my wit's end. The aspired-for stoicism is crumbling. Can someone end this thing?

[grega]

Hi bigsucker .... although I don't see in previous posts how this evolved from "smallersucker".  No matter.

Your humor .... very good 

Your maddening case of hiccups ..... not so 

Try this .... have a friend or relative, or even a fellow poster, hide from you in a dark room, preferably in the same house as you are in (works better that way).  When you walk into that room, have that person yell "boo" at the top of their lungs as close to you as possible.  This might relieve your hiccups.  Or it might not.  Just to be on the safe side, you might want to consider all those disclaimers that accompany tv medical ads, as some might apply in this case.

Greg

[HeadCase2]

  Radiation treatment is based on tumor volume rather than the longest dimension.  For example, a  3.5x2.5x2.5cm tumor would obviously have a larger volume than a 3.5x1x1cm tumor, so any potential radiation plan would be much different.  But both of these tumors might be referred to as a 3.5 cm tumor. I have seen in the medical literature radiation treatment for tumors longer than 3 cm.  So I would encourage anyone considering Radiation therapy for their AN to consult with an expert in this field, rather than automatically assume that the largest dimension of their tumor would exclude this treatment option for them.   The size of their tumor may or may not exclude radiation therapy.  And the tumor's location also is important (intracanalicular vs. extracanalicular), or how close the tumor is to the brainstem.  Find find out from an expert how the latest guidlines for radaition treatment would apply to your particular tumor and it's location.  
Regards,
  Rob