Surgery vs Radiation

[meb]

Hi Everyone - I am new to this forum, however was diagnosed with a 1.5-1.8 cm AN in December 2005.  Although I haven't written yet, I have found great support through reading and researching on this site - Thank you Thank you . . . Was wondering if there are females in the 40 yr old category who may have gone through proton beam at MASS General and what your experiences may have been.  Seem to be leaning that way as I just can't get past surgery at this point.  They are telling me I am good candidate for proton, although still a bit young for it.  Any input would be wonderful.  Tks so much

[jamie]

Age should not be a factor in any way, shape or form. In fact, I believe the younger you are, the more reason you have to avoid invasive surgery. Personally, I certainly would have gone crazy in the downtime.

[jamie]

The first acoustic neuroma was treated by Gamma Knife in 1969. That's 37 years. There are actually more long-term studies in existence for radiosurgery, than there are for resection. My radiation oncologist, who has a PhD in tumor biology explained the biological process to me and I feel extremely comfortable about the longterm. Given the effects of the radiation on the biology of schwann cell tumors, it is extremely rare for treatment to fail after five years. What happens is the radiation alters the DNA of the tumor, causing the cells to die when they attempt to divide, the center of the tumor becomes "bruised" (necrotic) and the cells die. Over time, the body scavenges the dead cells, and the tumor implodes. Since the cells divide slowly however, they die slowly and the process can take time. After successful treatment, and enough time has passed, there are no more living tumor cells left, on some occasions, the body absorbs the entire tumor, if not then only the fibrous capsule remains as dead scar tissue. To think that in 30 years, the scar tissue is going to suddenly spring back to life really has no basis in scientific reality, and is purely speculative. But for the sake of argument, if it were to do so after 30 years, and we haven't all perished due to the unfortunately violent and uncertain state of the world right now (nuclear Iran, etc.), I would think medical advances in even 10 years using nanotechnology, and who knows what else, would likely make the removal of an AN reccurence an outpatient procedure like getting a tooth filled. Invasive surgery's days are numbered.      

[meb]

Thank you so much for your replies - I am hearing a lot about Gamma Knife and not too much about FSR or proton beam.  Because the proton beam only has 10-15 year data the Doctor is not comfortable recommending for long term because I am relatively young.  However, it seems many in my age bracket have gone this route with great success.  I have only lost 15% of hearing, have ringing and  tinnitus and balance issues already.  My greatess concern is the balance issues will worsen after radiation right now it is ok - I can function, just usually feel off a bit.

Wondered if anyone could comment on their experiences with radiation and long term after effects if any. Again, my AN is 1.5-1.8.  Also, my protocol would be 6 weeks of 5 days per week 10 minutes sessions.  Has anyone done that protocol.  Hospital is Mass General. Thanks again for any input.

[Mark]

meb

FSR is simply a term for delivering the radiation does in fractions over several days. Here is a link that further describes it

http://www.cksociety.org/PatientInfo/staged_radiosurgery.asp

The vast majority of those getting radiosurgery treatments use either cobalt based ( GK) or Linear accelerator, aka LINAC ( CK, Novalis) generated radiation. The proton beam has very limited experience with only 2 facilities ( Loma Linda and Mass General) to my knowledge using it. I have not seen any studies with Proton beam success with AN's and only aware of a handful of people that used it and half of those did not have good outcomes. I would certainly do more research on proton as a treatment modality. Also, any treatment given over 6 weeks is radiotherapy, not radiosurgery. The difference is essentially accuracy. Radiosurgery machines such as GK and CK deliver the radiation with 1 mm accuracy which allows nearby healthy structures to not receive the high radiation dose. Radiotherapy machines are not accurate , hence small doses are given over weeks to accomplish the same goal without hurting the critical nerves and structures. Here is a link which discusses different systems, note it does not include Proton beam

http://www.cksociety.org/PatientInfo/radiosurgery_stereotactic_technology_comparisons.asp

Hope that helps

Mark

[jcinma]

Hi Meb-
I had 30 treatments at Mass General back in April/May 2005.  I am a 53 year old female that had retrosigmoid surgery back in 1996 and a second surgery in Feb. 2005 to debulk a 3 cm. recurrence.  The FSR was to halt the growth of what was left to preserve my facial nerve.  Aside from a short period of time that I was a little tired I have had no side effects.  The treatments did not bother my facial nerve ( which the tumor is still adhered to).  My facial function is near perfect, just occasional dryness in the left eye and a slight numbness of the tongue, but I had all that before I had the second surgery.  As I didn't have a balance nerve on that side( a result of the first surgery) I didn't have any additional balance issues from the treatments.  Who is your Dr. at Mass General? Dr. Loeffler was mine and he was most informative and caring.  I found the entire series of treatments very easy, the staff at the hospital could not have been better on all levels. My MRI in Dec. showed no growth, so far so good.
Jane

[meb]

Thank you to everyone who has replied to my questions about proton beam.  There is a hospital in Boston that does Cyberknife and now I am wondering if that is a better route to go.  I remain to be confused.  Just when I think I have sorted things out I become more educated  - although not a bad problem to have. 

My surgeon says watch and wait, but I feel I want to be proactive and move forward before more damage is done - just still wondering what radation path to follow.  Any input would be great.  Thanks so much

[jamie]

I'm partial to the CyberKnife, personal bias I guess, I love that robot. However I will not speak negatively of proton beam, because I don't know enough about it.  

[ppearl214]

meb,

welcome!

Met with my surgeon at Beth Israel today... the first time in my life I heard a surgeon say "nope, you are not for surgery but for radiosurgery!" 

She is VERY well versed and has experience in Gamma Knife (local at Tufts and RI, her training at Yale and she is assoc professor of brain/neurosurgery at Harvard, the hand picked protege of Dr. Peter Black), Proton (Martuza at MGH, who she knows and spoke VERY highly!), Cyberknife at Beth Israel and Novalis, which they have at Brigham Woman's (they also have a new "machine" there and will find out what exactly it is... waiting for the radiation oncologist to call to set up my appt for consult).

You and I (and many here) are fortunate to live in a medical mecca... I have confirmed that Dr. Peter Black at Brigham/Woman's does, on average, 50 AN's per year (microsurgery) with the ENT.  She felt the number for AN surgeries at  House Clinic (LA) was slightly inflated due to the fact that only approx 6% of those with brain tumors are AN's and based on the USA (and Canada) poplulation, their number of approx 500/yr was not true to count. 

More than happy to discuss my conversation with you offline (email) if you want... from a local perspective, am researching my options VERY carefully now as it is decision time... just which to go with, well... I'm working on it.  BTW, same age group as you... turned 45 (UGH!) last week.

Phyllis

[ppearl214]

Beth Israel is the one with the Cyberknife, confirmed.. only one in New England. Terry Barden is the girl in Radiation Oncology that handles inquires like your's and mine.. she's great to work with.. .they have my MRI CD en route for evaluation.

Thank you to everyone who has replied to my questions about proton beam.  There is a hospital in Boston that does Cyberknife and now I am wondering if that is a better route to go.  I remain to be confused.  Just when I think I have sorted things out I become more educated  - although not a bad problem to have. 

My surgeon says watch and wait, but I feel I want to be proactive and move forward before more damage is done - just still wondering what radation path to follow.  Any input would be great.  Thanks so much

[flagger]

Yes, in 2000 I had 28 treatments weekdays for a 2.1 CM.  This was at wills eye in Philadelphia, Dr David Andrews.  No adverse effects (a few mean headaches that became less frequent (1 a week to 1 a mo) and were gone within 6 months.  I still have 40% of my hearing (an side) and just have kept up with life.  (No facial or eye problems, no total hearing loss, no balance issues) I wish you a similar outcome.  I was 54 at the time and female.  Annual MRIs have showed continued shrinkage through 4 1/2 years. The decision is the hardest part.  Good luck! K

[meb]

thanks to everyone who has responded with such in depth information about radiosurgery/radiotherapy.  I am still trying to decide, however am leaning towards proton at mass general.

Will keep you posted and continue to gain insight through everyone's experiences.  This site is such a blessing as are all who contribute.  Thank you thank and happy Thursday.

[meb]

ppearl

You are an inspiration with all of your education and sense of humor.  Just wanted to take a minute to send you a personal note to hope you are coming closer to a decision.  You and others have given me so much to think about.  Being in the Boston area is great, however, we have so many choices it becomes a bit daunting.  I have not looked into CK because I am so impressed with Dr. Loeffler's credentials, however will continue to be interested in your path.  Hope you got some more answers today.