Decision time-CK vs. Proton

[Brian M]

Hello all, I have been reading this forum for the last several years and it has helped me alot with the decision process I have found myself with.  Like many of you, I went to the Dr. to find out why my left ear kept ringing and what caused the bout of vertigo I had nearly 3 and a half years ago.  I was referred to an ENT, who diagnosed a Vestibular Schwanoma on my left side, very small in size (5mm).  I spoke at length to my ENT about options to treat, and decided to watch and wait.  I did MRI's every 6 months for 3 years.  In March of this year, I was told it had grown (.9x1.3x.7 cm) and was starting to push out.  I was told it was time to think about taking care of the tumor. 
I consulted with my Dr. and two others about TransLab procedure.  I then checked on CK and Proton therapy as well.  I like the idea of completely removing the tumor and not needing yearly MRI's for the rest of my life via the TransLab approach.  However, the risks of surgery have me very concerned.  I looked into radiation, and believe that killing the sucker and then checking it yearly with MRI is an acceptable alternative.  But again, I am now looking at the reported risks associated with CK and Proton therapy.  My father had Proton therapy for cancer and was very pleased with the process.
After speaking to both centers for Proton and CK treatment, I am leaning towards Proton therapy.  CK will be 3 sessions over a week period.  Proton therapy will be 28 sessions over 6 weeks.  Proton treatment is longer in duration than Ck, but everything I have read and heard leads me to believe that Proton therapy is equivalent in effectiveness to other radiation therapies, but has fewer side effects.  I need to make a final decision in the next couple of weeks, and would be open to any input from those who have had either CK or especially Proton Therapy. 
Also, for those reading ahead who are still waiting and watching...here is some things to note I have found.   Lower salt/sodium intake = less ringing in the ear.  Mucinex helps with the "stuffy head" feeling.  Exercise and take the stairs, it will help with the balance issues and in the long run make the transition easier.  Don't stress out about the diagnosis too much, it is what it is, there are ways to treat it, it is not malignant, life will be good again.  Find support - family, friends, church, etc...You may not believe in God, but He believes in you...talk to Him.
Thanks and God Bless.

[BeckyMax]

Brian, I too am interested in Proton therapy.  Barnes Hospital in St. louis just installed a new protein machine and received FDA approval in the past month.  I'm in st. Louis and will be exploring it more if my MRI in August shows growth.  I like the idea of the proton therapy being able to adjust the depth of the beam, thus less exposure to health tissue.  CK is also my choice.  I want to avoid surgery.  I'm not much help, hoping others chime in.

Becky

[MaryjaneW]

My friend,

I found this study somewhat helpful in my decision.  Thought I'd share since you are making decisions within the next few weeks.  See these websites:  http://emedicine.medscape.com/article/857604-overview#a1 and http://www.ncbi.nlm.nih.gov/pubmed?term=proton%20acoustic%20neuroma .

Hope that helps!  I'm looking for a doctor to do low-dose gamma knife in several treatments.  My prayers are with you! 

Regards,
MaryjaneW
2 cm AN in January 2012, up from 1 cm in January 2011; grew back after 1.5 cm AN surgically removed in 1999.

[PaulW]

While Proton Therapy in theory does less damage to surrounding tissue, published outcomes for AN has been a little dissapointing.
Tumour control is good, but hearing, facial, and trigeminal nerve outcomes are not as good..

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

Please note facial and trigeminal nerve outcomes
http://www.ncbi.nlm.nih.gov/pubmed/19054586

[ppearl214]

I'm looking for a doctor to do low-dose gamma knife in several treatments.

There were only 2 locations, to my knowledge, that were doing "fractionated" GK... .I believe Houston and Providence. Dr. Georj Noren in Providence was definately playing around with it but at last check, I believe he has recently retired (hoping someone here can confirm this).

Proton, like many other AN radio treatment options (GK, CK, Trilogy, FSR, etc), is an effective AN treatment option although limited as to locations (ie: not as numerous facilities as the others I noted -- the most active AN Proton treatment centers seem to be Mass General Hospital Boston and Loma Linda/CA).  Also, check with your insurance coverage as Proton can be very expensive.

I know of a number of folks that are here on the forums that had successful and not successful Proton treatment performed on their AN's.... as can happen with any AN treatment option (radiation or surgical) and you have to remember that "individual results may vary..." when it comes to choosing a radiation protocol that will work best for you (ie: your location, travel, health care coverage, lifestyle, caregiving, out of pocket costs, follow up treatments with whom?, etc). 

Hoping this helps.
Phyl

[MaryjaneW]

Thank you, my friend!!!  That helps great deal!!!  Checked Loma Linda but not Mass General for Proton Therapy.  Will be checking Houston and Providence and see if I can find anything about the doctor you mentioned or his colleagues.  You're right, insurance, cost, etc., is important!!

Thank you for caring enough to respond.  Appreciate your help!!!

Regards,
Maryjane

[Ned]

I had FSR in 2003 with a linear accelerator machine, what is the difference compared to the Proton?

[Brian M]

Thanks all for your helpful posts and links.  I have read through everything and it helped in making a decision.  Maryjane W, thanks for the prayers and links.  Ned, I think the only real difference is Proton uses protons to radiate the tumor, and Gamma and CK use Photons.  The only other difference is the way in which the radiation is delivered.  Also, at this point, Proton is very limited in availability and more costly.  However, they are quickly building more and more proton centers, and I had no trouble getting my insurance to approve proton treatment.  I suspect it will become a prevalent treatment option in the future.
Thanks again everyone, decided to go with CK treatment locally.  Started the process, with treatment in about 3 weeks hopefully!
Brian

[pjb]

Brian good luck and I am sure you made the right decision....Just be sure that you have researched it to the fullest and also picked a great team is the most important part. Prayers and thoughts will be with you when you receive your treatment.

Best Wishes,

[akoo]

I was told Proton Therapy is kind of expensive. Anybody has any idea what is the cost of such a treatment?