My spouse was treated in July-Aug 2013 with 28 sessions of fractionated Proton Therapy at the The Massachusetts General Hospital Francis H. Burr Proton Beam Therapy Center in Boston- for a 1.5 cm vestibular schwannoma , also known as a acoustic neuroma. His outcome - very
very good. He did not miss ONE day of work- he worked every day during each treatment (he used the cancer library computer to set up virtual office/participated in teleconferences) The treatment took as long as a lunch hour at work. He had no side effects. NONE. No swelling of the tumor after proton treatment..NONE. He is still well- even now in 2017. Read more about this by looking at my posts under the alias of Keep Smiling.
If you consider proton therapy -
-Usually you send your MRI to a Proton Center and ask for consideration (for us it was free of charge) At a proton therapy center, a team of doctors evaluates and decides (usualy within 2 weeks) whether the patient is ideal for proton treatment and then a consultation is scheduled, if your insurance is able to cover it.
-The team of docs obviously considers many variables. Not all Acoustic neuroma patients are considered to be ideal candidates for proton therapy. Your tumor might be too big for it, but then again only a team of doctors could evaluate this. If you are considering Proton Therapy , given the size of your tumor it would be prudent to quickly send in your MRI's for a case study review. I would suggest that you send the MRI via overnight mail with signature receipt requested and follow up with a phone call.
-Insurance hassles were very tricky. We dealt with lots of struggles but in the end Aetna covered everything. It was no picnic.
Are you trying to research this from all the angles? Give this a try- the pubmed search tool (:
http://www.ncbi.nlm.nih.gov/pubmed/) Learn how to read the studies. Learn the medical lingo. Get help from google about things you don't understand. Try hard to find patients who had bad outcomes from various treatments- send them a private message asking to speak to them.
Be aware that there is a bias towards treatments other than Proton Therapy at this discussion forum. More often than not some of the ANA members will give you advice and warnings about Proton therapy and how it is not exact enough, about how there are margin errors. Ask deep questions...and you will discover how often Proton Therapy is used in children with cancer, whose lives depend on whether the toxic radiation does not contaminate good brain tissue....
Things to ponder-
- The tumor remains stable and doesn’t growth after Proton Therapy. Most people want to get rid of the tumor, however,
is there anything wrong with having the tumor there, inside your head, if it never grows and it doesn't bother you in any way? It is food for thought.
-Theory-More AN patients would probably get proton therapy if there were more Proton Centers. Once Proton Therapy is more convenient and less expensive it might be the gold standard to treat vestibular schwanommas.
-There are many proton therapy centers being built around the world. (see
http://www.proton-cancer-treatment.com/proton-therapy/proton-therapy-around-the-world/clinical-proton-centres-being-built-and-planned-centres/) The construction of these centers requires significant $ investment. If you research, you will find some negative comments about how Proton Therapy has doubtful outcomes for patients with certain problems, such as prostrate issues. Consider how proton therapy could be efficacious for one medical condition and not for another, and also possible biases of the commenters. Research this and try to uncover unbiased statistics and facts. Get on the Internet and research current info with through a critical lens. Obviously I am in favor of Proton Therapy because of my husband's good results. Maybe it makes sense to try to find people who have suffered and had a poor outcome from Proton Therapy. See f you can find any "warts".
-It is likely that the proliferation of new proton centers would threaten the revenue stream of medical providers of cyber knife, gamma knife and neurosurgery. The number of patients who have vestibular schwannomas and who then get Proton Treatment seems to be small. Other treatments seem favored, but it could be wise to ask if this anti-proton therapy bias is because of people suffer with poor outcomes after Proton Therapy or if it is due to other reasons.
- Time slots are highly coveted for proton beam treatment. It seems the teams of doctors who review case studies and decide whether a patient is a good candidate for Proton therapy MAY favor accepting other "needier" patients- for proton therapy, rather than AN patients. For example, Proton Centers are filled with children with cancers. It may well be that the AN patients are shuffled off to other treatments since there are other ways of treating acoustic neuromas are available (Gamma Knife, Cyber knife, etc).
It is conceivable that very soon there could be a newer innovation that is even better than Proton Therapy. Proton Beam Pencil is the latest type of Proton Therapy- and it may soon be developed for use on head/neck issues. Stay on top of the research. Keep reading and investigating.
Immerse yourself in comedy. I suggest that you get Netflix and binge watch the TV Show called "Chuck" . Norm Cousins built a strong case for the healing power of laughter :
https://www.youtube.com/watch?v=mqLAcpXzNks Best of luck!
