Proton Beam Therapy MA

[AMSAlbany]

Hi, my name is Alecia and I was recently diagnosed with an acoustic neuroma (6/13/14--Friday the 13th).  I was all set to receive GK in Pittsburgh with Dr. Lunsford until I spoke with my sons ophthalmologist who is in Boston.  He recommended that I see a Dr. Michael McKenna at Massachusetts Eye and Ear Infirmary in Boston because he feels that proton beam therapy is the best treatment.  A little bit of history...my son has glaucoma which was diagnosed at birth.  He has had numerous surgeries and I LOVE his ophthalmologist, which is why I am researching the proton beam therapy now.  I don't think he would recommend Dr. McKenna to me if he did not think Dr. McKenna was a stellar physician.  Anyway, my concern with proton therapy is that there is not a lot of published research available with the stats and results for ANs (at least not that I have seen).  I should note here that my tumor is 10x5x5 mm.  My question to all of you is .... does anyone have any experience with Dr. Michael McKenna?  I know some have posted about their proton beam experience and I will contact those who have said it's ok. Are there any others out there with any input on proton beam therapy?

Thanks in advance,

Alecia

[PaulW]

Have a good read about range uncertainty with Proton Therapy.
Your AN is quite small, and range uncertainty has more consequences for small tumours.
Also with proton therapy it treats to the 120% isodose line which has consequences for good tissue immediately surrounding the tumour. This has more consequences for AN's than other tumours.
Proton therapy sounds good in theory, but like all forms of radiation and machines its better at some things and not others.
I don't think very small targets are its strength.
So talk with your gamma knife and proton therapy doctors about this.

http://ptcog.ch/archive/conference_p&t&v/PTCOG52/PresentationsEW/E-10-Palta.pdf

Dr McKenna is on the ANA Medical Advisory Board, He is a surgeon. I think he will talk to you about surgery or Watch and Wait rather than Proton Therapy

[AMSAlbany]

PaulW,

Thanks for this information.  I've read that about proton beam therapy.  There just doesn't seem to be enough research (at least that I can find) about its use with acoustic neuromas. In theory it sounds great though, I agree.  I am meeting with Dr. McKenna tomorrow and am assuming that he is going to tell me to watch and wait, which I'm just not comfortable with giving that I am already experiencing symptoms from my AN.  Thanks again, Alecia

[KeepSmiling]

We are almost at the one year mark, and my husband has had no side effects or problems from Proton Therapy, although sadly he never did regain his hearing in his left ear, which was lost completely only 37 months after a hearing deficit was noted.  It is a relief that we are in the home stretch and soon he'll know the results of the MRI.

For all of you who are considering Proton Therapy, there are (recent) resources to consider:

Here is a youtube video  which features Dr. Jay Loeffler, who headed the team of doctors for my husband's care.
http://www.youtube.com/watch?v=8Of8FmaDqT8 

Here are some links to scientific reports and clinical studies regarding Proton Therapy:

http://www.ncbi.nlm.nih.gov/pubmed?term=%28proton%20beam%29%20AND%20loredo

http://www.ncbi.nlm.nih.gov/pubmed/12943574

http://www.ncbi.nlm.nih.gov/pubmed/24725695

http://www.ncbi.nlm.nih.gov/pubmed/21353158

Keep in mind that there are a few patients here at ANA who also had Proton Therapy. To find them, do a search of all the posts for the words "Proton Beam" or Proton Therapy".  Obviously, ALWAYS ask lots of questions- questions are good.  Keep smiling!

[KeepSmiling]

We are pleased to report an outstanding outcome with Proton Therapy for the treatment of his vestibular schwannoma, also known as an acoustic neuroma. He just had his first annual MRI on Aug 20, almost exactly one year after his 6 week Proton Therapy treatments ended at Massachusetts General Hospital at the MGH Francis H. Burr Proton Therapy Center.  We met with Dr. Jay Loeffler at MGH and the good doc said that on the MRI it now appears that the acoustic neuroma has NOT changed in size. The MRI shows there is a darkened area on the inside of the tumor, indicating that the blood supply to the tumor is reduced. He will get another MRI  again next year and we will update you then. 
PS (You may want to watch this video: http://www.youtube.com/watch?v=8Of8FmaDqT8  )