Growth after 6 mos.

[tsl]

My first 6-month MRI showed a growth of my AN.  My first MRI gave its size as 7 x 5 mm.

In the report of the 2d MRI the AN size was given as 9 x 6  x 4 mm; when it referred to the AN size of the first MRI it gave a different size of 6 x 4 x 3 mm rather than the 7 x 5 mm.

Because of the growth my neurotologist is recommending that I treat the AN now.  I've been only Watching and Waiting since my original diagnosis in Dec 2006. 

Since all this happened yesterday I'm trying not to get too bummed out.  I had been hoping to be Watching and Waiting for a lot longer time.  My plans are to see the radiation oncologist he recommended just to talk.  I live in Massachusetts so I'll also be heading to Boston for a second opinion.

As a possible radiation treatment for my AN, my neurotologist recommended a new machine recently acquired at the hospital with which he is affiliated:  BrainLab M3 System that uses a Linear Accelerator.

When I made my decision not to have surgery, I began researching Cyberknife, Gammaknife, and Proton Beam.  My Dr. said that the BrainLab etc. was first used in Europe.

Is anyone familiar with this type of stereotactice surgery?

Also, at this time no AN patient has been treated with this new machine by the team that was recently trained.  Am I being unfair feeling uncomfortable with these factors?

[Derek]

Hi Theresa...

If you do a search on this forum under 'BrainLabm3 stereotactic radiosurgery' you will see that I raised this very subject in August 2006 and undertook relevant research the result of which is now readily available to you.

In a 'nutshell'...if going down the radiosurgery route my personal advice would be to stick with either CK or GK whereby they both (particularly GK) have a long history of successful outcome in the region of 97%.

However, the ultimate choice is of course for you to decide following your own research but whatever treatment option you decide upon I wish you all the very best for a successful result.

Derek

[krbonner]

You're right - it doesn't hurt to talk to the doctor you've been referred to.

Do you have the names of the AN and radiation oncologists in Boston?  I don't remember if we've gone through them with you before.  There are a lot of radiation options in the Boston area (CK, GK, Proton, etc.).  I'm not intimately familiar with them, having had surgery myself, but there are many here who are. 

And, as Phyl mentionned, please join us for brunch on Aug 5th!

Katie

[tsl]

You're right - it doesn't hurt to talk to the doctor you've been referred to.

Do you have the names of the AN and radiation oncologists in Boston?  I don't remember if we've gone through them with you before.  There are a lot of radiation options in the Boston area (CK, GK, Proton, etc.).  I'm not intimately familiar with them, having had surgery myself, but there are many here who are. 

And, as Phyl mentionned, please join us for brunch on Aug 5th!

Katie

Hi Katie,
I can't begin to tell you how confused and overwhelmed I feel.  (I'm embarrassed by this because I know that there are many people here who are dealing with much more serious issues--before and after their treatments. )

My plan is to see the radiation oncologist my neurotologist recommended in Springfield.  I figure it can't hurt to talk.  I plan on making an appt with Dr. McKenna for his opinion on my situation.  I remember from what you had told me earlier that you thought that Dr. McKenna for radiation may only work with Dr. Loeffler with Proton Beam.  My neurotologist only recommendation for a radiation oncologist other than the Springfield guy is Dr. Loeffler.

I'd very much like to go to the brunch in August. 

Thank you,
Theresa

[tsl]

Derek,
Thank you for your information.  I had also posted the question about the BrainLab m3 system on the Cyberknife Support Group site and rec'd a reply from Dr. Medbery that I want to share.

The link is:  http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=13269

I was also able to locate the full text of the article.  If anyone is interested, I can also post it.

-Theresa

[krbonner]

Theresa,

Interesting reply from Dr. Medberry.  One of the authors on the study Medberry quotes happens to be a neighbor of mine.  I may ask him what he thinks about this discussion.

In any case, there are lots of options for radiation in the Boston area.  Loeffler is at MGH, (and McKenna is affiliated at MEEI) and so will only recommend what MGH has to offer, I presume.  Beth Israel offers CK, and GK is offered by Dr. Noren in Providence, RI and (I believe) at Tufts/New England Medical Center.  I never got to the point of asking McKenna about radiation at the other places, but it'd be interesting to see what he says about it (knowing he's affiliated with MGH).  Both Loeffler and McKenna have extensive AN experience, but I have no idea how they'd approach being asked to defend MGH's radiation protocol against GK and CK at other hospitals.

All the information is definitely overwhelming - that's nothing to be ashamed of!  It's really hard to process it all and make a decision that feels right for you.  Take as much time as you need to get there.

Katie

[ausprim]

tsl

I was diagnosed with a small AN 12 mm x 10 mm over 10 years ago.  I had three MRIs within the first six months and two of the MRI's were slightly different measurements.  One radiologist said it had "grown" slightly, but then when I had a second opinion on the reading, the doctor and radiologist actually checked the size of the first MRI, the second and the third and they were all the same size, no change.  I was told it was different radiologists reading these MRIs.  The AN measurements are so tiny when you talk about the difference between 9 mm and 7 mm it is so miniscule a measurement it could barely be called "growth" even if there had really been any growth.  I would have another radiologist or another neurotologist check your MRIs and confirm that you may not have any growth, and if you do, it is minimal.  These tumors are extremely slow-growing, unless you have NF-2, and if not the growth in rarely rapid.  Your AN is very small, years ago would not have been even diagnosed because the technology was not detailed enough to see it.  Now they are discovering tiny ANs which are not causing problems, are not malignant and can be left with minimal side effects from the actual tumor.  Removal of such a smal benign tumor makes no sense, even radiation at this point is not necessary.

My AN has not changed in 10 years, it is still 12 mm x 10 mm.  I have the same hearing I had 10 years ago, and surgery and radiosurgery will rarely stop any hearing loss which may be occurring.  Some are lucky to still have good hearing, and others may lose some or all.  Hearing loss is not relevant to size of the tumor, some with tiny ones can have hearing damage, and others with large ones have not much hearing loss.

I hope I am not offending anyone in the wait and watch area or those considering treatment, but 10 years ago when I refused treatment to "wait and watch" it was a new concept.  Now my neurotologist has over 45 patients with ANs who are waiting and watching, and not many having any growth.   In 1997 those of us who stood our ground to do nothing have created a whole new group  of wait and watchers, and many have needed no treatment.

Good luck with your decision, but please do not panic over the "growth" concept as quite often it can be the reading of the MRI that is a little "off."  Wait another six months, have another MRI and have the same radiologist read them all and tell you if there really is any growth.

Best wishes
Lynne Shewmaker
Diagnosed 8/97 (at age 48)
Ten years since diagnosis
AN is 12 mm x 10 mm
88% hearing retention

[Jackie]

Hi tsl,

Thank-you for the inspiration!! In all of this age is indeed a factor. I am in the "wait and watch" mode also, but much newer than you at it! I am so glad that you posted today. It's great to know someone out there actually has been waiting for 10 years with no growth! Good for you!! I hope all of us could be that fortunate! May your "no growth" continue!!
Jackie

[Jackie]

Oops!! I addressed my last post incorrectly! It's supposed to be to Ausprim!! Sorry!

[beancounter]

I want to address this to ausprim, who has made my day.  I'm still so new to this that I am really not sure where they'll put me, but expect to be in "watch and wait" because my little critter was found incidentally and I have no discernable hearing loss (tests are coming up at the end of the month for hearing, nerves and balance issues).  Whether it is prudent or not I don't know, but I am allowing myself room to consider that it just might be possible to have a tumor that grows very slowly or not at all.  Time will tell.  I guess it's time to learn that patience is a virtue (one I've never acquired).

[lori67]

If you figure out that "patience" thing - let me know.  I don't seem to have acquired any of that either!

And Theresa, don't feel bad for being overwhelmed and confused.  I don't think anyone can get the news they have an AN and NOT be overwhelmed and confused.  It will get less confusing and before long, you'll be helping someone else who is feeling that way.

Lori 

[otispie]

personally, i was told not to have anyone treat you that has not performed treatment on at least over 100 patients but preferably a lot more than that.  it makes sense.

[GRACE1]

Personally I would be hesitant to be either the first or the first of 100 people treated on a new machine at a faciility.

When I decided on GK in late 2006, the doctor/hospital 60 miles from my home had performed several hundred GK treatments over a period of 5-6 years, but they had only treated 13 or 14 ANs.  I decided to travel 6 hours to Wake Forest in NC to get my GK because they have done so many over the years.  S 

From the ANA website:  "The ANA recommends treatment from a medical team with substantial acoustic neuroma experience.  This statement was adopted by the Acoustic Neuroma Associations Board of Directors in October 2001 and demonstrates its belief that treatment of acoustic neuroma by a medical team with extensive experience is critical to your best chance for a successful outcome."

Good luck on any deciision that you make.

Grace