Tumor debulking rather than removal?

[ColoradoGal]

Thanks, everyone who has welcomed me to the group and shared their experiences.  Can anyone fill me in on their experience with debulking rather than removal?  Did you have to do radiation afterwards?   How has it worked for you?  Thanks for all your help and insights!

[marymomof3]

Hi Coloradogal.  I had surgery in March of this year and had the entire tumor removed.  But I had done some research in advance of the surgery in case the doctors were unable to remove the whole thing.  I believe that if they 'debulk' you will need to follow up with radiation to stop the growth of the tumor - to basically kill it.

Mary

[leapyrtwins]

My AN was completely removed via retrosigmoid, but my hearing wasn't able to be saved.

I know that debulking is routinely used these days for large tumors, but I'm not so sure that 2.5 cm is considered large.  I'm sure there is no reason a 2.5 cm AN couldn't be debulked in order to save hearing, but is there a reason the doctors aren't just recommending radiation period?  Instead of surgery to debulk and radiation to "kill" the remaining tumor?

Jan

[Mark]

ColoradoGal,

I would also agree with Jan. It is very curious that the doctors you saw would not present radiation as a primary treatment for a 2.5 cm AN. Anyone who has had a debulking procedure typically always has follow up radiosurgery on the residual tumor unless the surgeon feels they were effective at devascularizing it.

Barrows is a top notch place, but that doesn't mean every doc is an AN expert either. I think you might want to get some second opinions. Certainly in terms of the radiation option you might want to try Dr. Kresl who several folks here have used for CK treatment

Mark

http://www.azoncology.com/Default.aspx?tabid=173

http://www.thebarrow.org/About_Barrow/Bios/Group_1/Kresl_John_J._MD/index.htm

[Jim Scott]

ColoradoGal:

As you may know, I had a 4.5 cm AN and my neurosurgeon devised a plan to save my facial and other vital nerves by debulking the tumor (from 4.5 to 2.8 cm).  Then, after a 90-day healing period, I underwent 26 FSR treatments intended to kill the AN's DNA.  So far, so good.  I came through the surgery (retro) just fine - no complications - and the FSR was totally uneventful but successful.  My last MRI (12/07) showed shrinkage and necrosis.  This type of approach is determined by many factors.  My AN was large and pressing on my brainstem.  I was 63 at the time I received the radiation treatments so that was probably a factor, too. 

The short answer to your question - "how did it work for you?"  is: just great! 

Of course, we're all unique individuals.  Doctors are not all equal and my experience may not be yours.  I can only offer what I know.  I hope it helps.

Jim

[Jim Scott]

ColoradoGal:

This is strictly your decision to make, of course, but I would recommend debulking/radiation.  Here's why:  'Complete removal' isn't always 'complete', no matter what they tell you afterward ("we got it all").  I've seen (too) many posts from folks with re-growth that say their surgeons originally stated they 'got it all' the first time.  Unfortunately, sometimes the surgeon leaves a tumor cell (or two) behind - which is very easy to do - and the patient has to undergo another surgery or radiation down the road after assuming he or she was AN-free.  This is difficult to deal with.

My neurosurgeon teamed up with a radiation oncologist and they very carefully planned my tumor resection and subsequent FSR.  It's a practical approach that, in my (non-physicians) opinion, utilizes the best of the two competing modalities for AN treatment. 

Again, just an opinion from an ordinary AN patient - one who has greatly benefited from the debulking/radiation approach.  It's still up to you.  We'll support whatever choice you make, of course.  Our advice is free...taking it is optional. 

Jim

[MAlegant]

Hi Coloradogal,
My AN is a little larger than yours and I received the same advice from the doctors at the Cleveland Clinic and at University Hospitals.  Because of my age (48, the doctors consider this young!) and the fact that I am in good health, combined with the fact that tumor shows necrosis or something weird in the middle, surgery is the best best.  If they could have used the GK on me I'm sure they would have. It's a pretty cool 5 million dollar toy.  Also, in order to preserve the facial nerve and hearing (I have no hearing loss), the conservative approach is considered my best bet.  They would then follow that with GK if necessary.  The doc at UH said that many times debulking one of these sometimes results in no tumor growth. That's my story.  Stay tuned for more after surgery on Tuesday. And good luck and best wishes.
Marci

[leapyrtwins]

Colorado -

I've heard that the docs at Barrows are excellent; you're in good hands.

As far as your options go, I don't know what I'd choose in your situation.  I can tell you that I chose retrosigmoid in the hopes of saving my hearing and it didn't pan out.  But I subsequently had BAHA surgery and I'm happy with the outcome.   It's a tough call, but I can say without reservation that you should do what is best for you.  It's your personal decision.

Regarding complete removal of ANs, as Jim said, there are cases where the doctors removed the entire tumor and then the patient had regrowth.  As Jim also said, it's very easy to think the entire tumor is removed and then one or two cells crop up.  However, Jim did not say that the chances of regrowth after complete tumor removal are very small.  My doctors said my AN was completely removed, but also said my chances of regrowth are 1-2%.  That's a statistic I feel very comfortable with.

As with most things "AN", you have to feel comfortable with the statistics involved with the course of action you ultimately choose.

Jan 

[sgerrard]

Hi ColoradoGal,

In your situation, you might consider leaving the final decision to the surgeons, after they have opened you up. Until then, they won't really know what they are up against, and whether debulking will offer a good chance of hearing preservation. You could tell them something like "if leaving a bit seems like it would preserve hearing, then do that, but otherwise take it all." However that still leaves open the possibility that they debulk the tumor and you lose hearing anyway. How good is your hearing now?

Steve

[leapyrtwins]

In your situation, you might consider leaving the final decision to the surgeons, after they have opened you up. Until then, they won't really know what they are up against, and whether debulking will offer a good chance of hearing preservation.

Good point, Steve.  MRIs are one thing, but the docs really don't  know what they are getting into entirely until they open up your head.  At that point, they sometimes have to change the game plan.

Jan

[JulieW4]

I also agree with leaving the decision with the surgeons.  One reason I chose surgery over radiation was becasue every doctor I talked to said that the growth pattern was different then what is typically seen with an AN.  There was also a chance that it was a facial schwanoma and so the doctor had told me that they would debulk the tumor if this was the case.  It turned out that I had a cochlea schwanoma which was only the second time that my neurosurgeon had seen it.  It is true that they can only tell so much from the MRI and it's not until they go in there that they truely know what is going on.  So they may make a decision to debulk or remove based on what they see.

Good luck.  You will be in my thoughts and prayers.

Julie

[ColoradoGal]

I like your suggestion, Steve, about letting the doctors decide once they see what they are up against.  Perhaps I will print out what you wrote and take it with me so I can just read it to the doctors.   

Thanks again, everyone, for your ideas and advise.  This really helps a lot.

[leapyrtwins]

Perhaps I will print out what you wrote and take it to Phoenix with me so I can just read it to the doctors.   

Careful with that idea.  Steve might charge you a consultation fee 

Jan