MEEI follow up-questions...

[inmaine724]

So I had my follow up with Dr Nadol at MEEI yesterday in Boston.  He said the 'watch and wait' phase is over, and that the options now are surgery to remove it, or the radiation.  He proceeded to give me all the risks and benefits of each.  The surgery, for me, is not even a remote option.  But as I say that, he did tell me that there is a possibility that the radiation may not work, and if it doesn't and I then need surgery, that the radiation will have 'oblierated' (his word) the surgical path, thus making surgery much more complicated.
Can anyone advise about this?  I thought radiation was really the only way to go, but I don't want to make things more difficult down the road.  Oh, and what is this thing about radiation possibly making the thing mailgnant? Can that really happen?  Yikes...
The doctors he referred me to are Loeffler(radiation) and Martuza (surgery).  Does anyone know these guys?

The tumor measures 5x11x6mm  Small, but it's affecting my facial nerve/balance and of course, the hearing loss...

Thanks all!!

...Danielle

[leapyrtwins]

Danielle -

with an acoustic neuroma of your size, radiation isn't "really the only way to go".  Radiation is one option; surgery is another option.

That said, it's a personal choice.  What's right for one isn't necessary right for another.

I had the choice and picked surgery, which was a marvelous choice for me - but others have picked radiation and it was the best choice for them.

If you choose radiation, yes, there is a chance that the tumor won't die or that it will regrow.  And generally no necrosis (death) or regrowth after radiation does mean surgery. 

Nothing in life is 100% guaranteed.

Even those of us who had surgery and were told our AN was removed "entirely" have a 1-2% chance of regrowth.

You have to educate yourself, weigh the pros and cons of each treatment, and decide what you feel comfortable with and what you think is best for you.

If you haven't already, ask the ANA for their informational brochures.  They are free and the information in them might help you make your decision.

I also suggest consulting with a doctor who does both surgery and radiaton - not a doctor who only does one.  Docs who do radiation tend to recommend radiation; docs who do surgery tend to recommend surgery.

And radiation will not make a benign tumor (99.9% of ANs are benign) malignant.  That is a wives' tale.

Good luck,

Jan

[inmaine724]

Hey Jan. 

I hope I didn't make it sound like radiation was the only way to go and that's how it should be for everyone!  I was referring to all the spine surgeries I have had in the last few years, so for me, surgery wasn't even something I would consider unless they told me there was no other option available.  I've just had enough of surgery and hospitals and the whole thing.  It is a very personal decision for everyone.  I should have made that more clear!

Sorry!!  Danielle :-)

[epc1970]

Dr Loeffler is excellent. He is the Chief of Neuro-Oncology at MGH. I have not had treatment with him as I had surgery but had a consult and he was very knowledgeable and had I had radiation, I would have gone with him. There are others on the forum who have had treatment with Dr Loeffler and will hopefully chime in.  My surgeon was on the West Coast and knew of Dr Loeffler and his excellent reputation.  Have not met with the surgeon you  mention but did consult with the team of Dr Barker/Dr McKenna. Dr McKenna is House trained and I see him for my clinical follow up here on the East Coast. Many on the forum have had surgery with Drs Barker/McKenna.I'm not familiar with a Dr Martuza but hopefully someone else is! Good luck making your decision.

Erin

[leapyrtwins]

Not a problem, Danielle. 

Just thought from your post that you had been told that radiation was your ONLY choice.

You've probably posted on other threads that surgery was out of the question for you, but with so many Forumites considering treatment these days I sometimes lose track of what story belongs to who 

Guess mind "glitches" like that come with age.

Jan (going to be 49 on Saturday  )

[Sheryl]

Hi Danielle - I may be coming to the end of my wait and watch which has lasted for almost 9 years.  Some strange, subtle new symptoms and instead of waiting until December for my next MRI, I will be going to Boston on 9/29, to a brain stem tumor specialist at the Brigham to have the MRI earlier.  I met him (Dr. Ian Dunn) in July and was quite impressed with his knowledge, personality, and confidence.  He trained under Dr. Ossama Al-Mefty who is also at the Brigham and is world reknowned (check the posts under "physicians").  I was adamantly against surgery until then but now am reconsidering my options.  He also said that I could have radiation but if it was not successful and the tumor continued to grow through it (as did my husband's meningioma), the surgery would be more difficult as the tumor would get "sticky".  If you read the posts on the Cyberknife forum board, the docs there say that it is not a more difficult surgery. 

It was also recommended that I see a neurosurgeon who does both radiation and surgery.  I was checking out Cyberknife and in Boston that would be the Beth Israel and Boston Medical Center.  I called both and they have neurosurgeons on staff who wouldn't be biased.  I have not followed up on that yet. 

Please keep us updated and good luck.  I know how stressful this all can be.
Sheryl

[lholl36233]

Danielle,

I really wish you could see Dr. McKenna.  He made the decision for me to have Proton Radiation with Dr. Loeffler because surgery would, "guarantee damage to the facial nerve".  I would have had surgery if he told me it was the best option.  I didn't know what was best for me.  I needed someone who knew to tell me and Dr. McKenna did that for me.

I would strongly advise you to see Dr. Loeffler before you decide what to do.  Keep us posted.

Laura

[Lynn Mc]

Danielle,

I agree with Laura.  If you could see Dr. McKenna it would be really helpful to you.  I  had no clue about what I should do and he offered me some great advice.   I had surgery with Dr's McKenna/Barker.   He is great about the options.
Good luck on your journey.

[krbonner]

I had a consult with Loeffler when I was deciding what to do.  Even Loeffler, who is strictly a radiation guy, told me that surgery was the best choice *for me* at the time.  He was great and very knowledgeable and experienced.  Martuza is one of the surgeons at MGH.  Also very experienced.  I had surgery with Barker, but I know there are others around here who had surgery with Martuza. 

The reviewed studies all say that radiation treatment will NOT make a benign tumor become malignant.  McKenna also adamantly stated that radiated tumors are not actually more difficult to remove, if needed down the line, than non-radiated tumors. 

If you need to consult with more doctors to feel comfortable with your decision-making, do it.  Go on as many consults as you need to.  Good luck!

Katie