Radiation choice

[keithmcgowan]

After months of research, I have have decided on radiation treatment for my acoustic neuroma.  I am still undecided which type (proton, gamma knife or cyberknife).  I would like to hear why each of you chose the type of radiation that you did.  Each doctor I've spoken to states that their method is the best which just makes me more confused  Also, is there a proton center that claims to be the best?

Thanks for all input.  I would like to make a decision very soon.

Keith 

[JoyNJ]

Hi Keith,
I chose the old fashioned low dose, 5 times a week for 5 week radiation for one simple reason.  I already am deaf in my left ear (unrelated to the AN) and needed the best option to save the hearing in my right ear.  When I had the symptoms that finally sent me to an ENT (2 dizzy spells that made me vomit) and went to a local ENT, I am sure he thought I had an AN, especially after I failed the balance test. But since I was "profoundly deaf" in my LEFT ear, as per the hearing test. he was expecting the MRI to show the AN on the left.  Surprise, surprise, surprise...the AN is on the RIGHT.  He sent me directly to Jefferson Hospital in Philadelphia, and the Neurological ENT there said that the best option to save the hearing in my RIGHT ear was FSR (forget the actual spelling of the words, sorry, but it is the old-fashioned, prior to gamma or cyber knife type).  My NeuroENT felt this would give me the longest time before I will need to consider other options, the only one I seem to find being a cochlear implant.  I figure the technological advances that have brought cochlear implants from bulky boxes with long wires from your head to the box 15 years ago to something that looks like an over the ear hearing aide that is attached to an implant under the skin near your ear via a magnet, with much improved sound, will evolve into something wonderful in the next 10 years...and hopefully I will keep "useful hearing" in my right ear until then!

The treatments were short, a total of 10 minutes from on the table to off the table, although I did have a 3 hour round trip to get to Jefferson due to where I live (very southern NJ), The biggest side effect I had at first was extreme exhaustion from about the beginning of the second week until about 10 days after treatment was done.  I did begin to have hearing issues and some facial nerve pain on the right side just as the treatments ended on 12/18/12 and am dealing with that as the dose of steroids did not do away with the inflammation, so I am going to my doctor tomorrow to get more. 

It is a journey, fighting this little tumor hiding on the right side of my brain.  I have received wonderful treatment from everyone involved and cannot say enough good things about Jefferson Neuro and Jefferson radiation oncology at the Bodine Cancer Center in Philadelphia.  ALL have been wonderful.

[robinb]

I was diagnosed in November w/a small 13mm x 7mm AN right side. Moderate hearing loss, mild tinnitus and no vertigo/balance issues.

Fortunately, my insurance allows whatever I choose, wherever I choose and all the main places are In Network.

I ruled out surgery pretty quickly, although for the hell of it I did go to see Dr. Friedman at HEI since I live in CA. Of course, he said surgery was best option, since that's what he does. When he realized I would not have surgery, switched gears and said he would do Gamma Knife. Its not their specialty so I would not have it done with this practice.

I sent my MRI to Dr. Chang at Stanford (Cyberknife) and he responded immediately. Had a good conversation w/him. If I chose CK, this would be the place.

Also sent MRI to UPMC and NYU Langone (GammaKnife), which based on my research, have the most experience and best reputations in dealing w/AN. Both docs came back to me pretty quickly with same opinions.

I have chosen GK, set to go to UPMC w/Dr. Lunsford on January 24th. I only considered GK here or w/Dr. Kondziolka in NYU Langone (he used to be at UPMC). I ruled out NY as their GK equipment was wiped out by Hurricane Sandy and they are doing procedure in NJ or Long Island, at their convenience not mine, plus he is not set up yet to particpate with any insurance, so would have to be out of network.

I spent a lot of time calling people on the Willing to Talk List this group provided. Everyone was very forthcoming about their experiences.

Ultimately, I chose GK over CK due to the statistics available, one day procedure also preferable as I did not see the advantage of more but smaller doses.

I had three more local docs scheduled for consults just so I could get more opinions but I cancelled them since I felt sure in my treatment choice. At some point, it all becomes information overload.

All I can say is do your research, talk to as many people as possible, and then make the decision that is best for you.

Of course, I havent had it yet, so wish me luck. I will post an update when I am back from Pittsburgh!


 

[arizonajack]

I chose radiation over surgery for the following reasons:

1 - Complete loss of hearing on AN side. It's not coming back.
2 - I'm 66 years old. Given a choice, there's no way I would opt for surgery.
3 - Tumor is small - 4mm x 4mm x 11mm

I chose Gamma Knife over Cyber Knife for the following reasons:

1 - Barrow in Phoenix does both and my doctors have done both so I got good intel on both options and learned that GK is accurate down to a fraction of a mm, better for smaller tumors.
2 - In and out in a day and it's done.

I'm having it on January 22 2013.

[PaulW]

I chose single session CK. Hearing preservation was important to me
From the stats available CK appeared to have a slight edge over GK for hearing preservation.
According to my doctor it was unclear at this stage whether Multisession CK, Single Session CK, or GK provided any better hearing preservation results. He had done all methods. Radiation to the cochlear was an important factor. The homogeonous dose of Cyberknife over GK may possibly help, so might fractionation. However fractionation comes with an increased risk of treatment failure.
Although 3 fractions in 3 days this is probably minimal.
There also appears to be differences between the Gamma Knife Perfexion, versus the older Gamma Knife C for hearing preservation, which is clouding the statistics, as well as improvement in all machines over time.

Proton therapy while theoretically causes less harm and may eventually be the best form of radiation, published results were relatively thin, and published results not as good as CK or GK for acoustic neuromas.

I also wasn't really inspired by the headframe. The flexibility of the CK robot to avoid the cochlear and the brain stem as well as deliver a more homogeonous dose to the tumour appealed to me. Gamma knife does create hot spots with the centre of the tumour typically receiving twice as much radiation than the edge.

Why give the middle of your tumour 26Gy versus 15.6Gy when it only needs 13Gy to kill it?

The maximum radiation dose in GK is typically double the dose to the tumour margin, while in CK its typically 25% higher.
This maybe a factor in hearing preservation too, but is yet unproven also.

Despite all of these things, results are surprisingly similar between the best GK centres and the best CK centres

 

[arizonajack]

Gamma knife does create hot spots with the centre of the tumour typically receiving twice as much radiation than the edge.

Why give the middle of your tumour 26Gy versus 15.6Gy when it only needs 13Gy to kill it?

Interesting point. I'm asking my doctors to address the question and I'll report back with the response.

[PamelaD]

Hi All,

This is my first time joining in to the discussion, though I have been reading since my diagnosis on Dec. 6th, 2012.  I have a 10 x 6 x 5 mm AN .. am 49 yrs old, and otherwise, in great health.   Although it is small, I do have symptoms of ear fullness, tinnitus, and very occasional gait instability.   First, I am so grateful for this site and to each of you, especially the Sr. Members who have so much to share and give such encouragement! I have rec'd terrific information and have really used it in guiding who I have met with regarding my AN.

After meeting with four surgeons ( in NYC area) and with two who do Gamma K,  I think that I have ruled out surgery for me given the size of tumor.   I need to learn more about Cyber K and Proton Therapy as well as long term side effects of Gamma K.  Am reading what I can and seeing what you all have to say.  It is confusing when highly regarded specialists give differing opinions.  For instance, Dr. Sisti says that I will "have a date with the Gamma K in the future" but advises watch and wait for now, w MRI every 6 months.  Dr. Kondziolka states that treating earlier, rather than waiting, is better overall for hearing preservation.  Dr. Lunsford indicates the same, though I did not meet with him (sent him my records and films and he responded to them).   

If I can be of help to anyone since I am starting to climb this steep learning curve, I am happy to share what I have learned.  In the meanwhile, please share thoughts on Gamma K vs Cyber vs Proton , whether those you have met with advocate treatment over "watch and wait", etc...

In friendship,
Pamela

[PaulW]

There is much debate over the best ways to manage an AN.
Many small AN's never grow or need treatment. However hearing loss is a risk of non treatment even if your tumour doesn't grow.
Long term hearing preservation like 10 years plus is poor no matter what you do. With some studies showing Watch and Wait actually providing the best hearing preservation rates for 10 years plus.

So the common wisdom was that you should not have treatment until growth was documented, and this may give you the most normal life for longer.

However there have recently been a couple of papers released indicating that proactive Gammaknife may preserve hearing better than having a W&W period followed by GK. This is a relatively new management strategy.

http://www.ncbi.nlm.nih.gov/pubmed/21121792

http://www.ncbi.nlm.nih.gov/pubmed/22937934

[richcooks]

Keith,

  I had a 5 treatment FSR exactly two years ago.  As of my last MRI and hearing test:  My tumor has shrunk from 9 mm - 7.8 mm,  and my hearing is the same as before the treatment.  I have had no other negative affects.  Still have the constant ringing, but i like to say, " Buzz is dead but his spirit carries on".    So, good for you on doing your research.  My main goal was two fold, (1) stop the tumor from growing and (2) preserve my remaining hearing.  To date it looks like my mission was accomplished.    You will find on this forum that people focus on the Doctors previous experience with AN's or with Radiation doses.  I felt that i need to treat this as a tumor (nothing special),  and I needed a technology that will kill it and not have any or minimal collateral damage.   I asked questions about how good a target does my tumor make?  Can you hit it easily with your technology?  How do you ensure that your aim is accurate?  What is the accuracy of the technology?  Why this technology vs another?  You will be surprised at the responses to these questions.   

  Best of luck.

Rich

[chloes mema]

Hi Keith

I had CK May 2012.  That was my choice after many months of correspondence with other informed forum members.

I don't do needle, knives, or pain so after much research my choice was 3 treatments of 40 minutes each of CK. 

Do as much research as your mind can take and listen to your inner voice which will lead you to the correct treatment for you.

Good luck, keep us posted.

Karen

[ppearl214]

Hi Keith!

Happy new year to you and that lovely wife (N)!

I am going to keep my mouth shut on this discussion  as 1) you know my stance and 2) I want to see how others note.

I'm thrilled to see that you are honing in on what you want to do for your AN situation.  I know it's been a long, tough road in the decision-making process. 

Hi to N and will talk soon.

Phyl

[arizonajack]

Gamma knife does create hot spots with the centre of the tumour typically receiving twice as much radiation than the edge.

Why give the middle of your tumour 26Gy versus 15.6Gy when it only needs 13Gy to kill it?

Interesting point. I'm asking my doctors to address the question and I'll report back with the response.

I got a response from one of my doctors last week and then forgot about it till I got back into this thread. He wrote:

"Radiation therapy is somewhat like a flashlight.  The center of the light is brighter than the periphery.  Because of the physics of radiation, we end up giving the center of the tumor more dose.  We know that 13 Gy to the 50% isodose line controls the vast majority of the tumors."
 

[skipg]

I am 2 mos post proton treatment and happy and satisfied with my choice. See my proton journal under radiation.....but....I do have one big regret. I did all the research and went to the symposium in Cincy. I also consulted with a CK doctor here along with a neurosurgeon and a neurotologist. A total of 6 doctors from radiation and surgery backgrounds. They all agreed that WW was good for me since I had good hearing and my AN had not grown in 6 mos. Then from June of 2011 to July of 2012 my AN doubled in size and I lost serviceable hearing in my AN ear. Many other symptoms came on and my tumor needed to be dealt with. It is easy to look back and 2nd guess, but I wish I would have gone with GK immediately instead of ww for 18 mos.  But who would have thought. After all, I did my research and scoured this forum and had consensus from the experts. I rolled the dice and came up short.  Life is a matter of choices and maybe my experience will help someone else. Still a good life and much to be thankful for.

[robinb]

Hi pamelaD-

I tried to respond again to your PM but it says your mailbox is full. I will call you in the next couple of days.

[Tumbleweed]

Hi, Keith:

Here's an excerpt from a post I made almost 5 years ago. It compares GK and CK. I chose CK primarily because it increased my chances of preserving my hearing:

CK delivers a more homogeneous dose to the tumor compared with GK. CK delivers only 15% higher dose to the center of the tumor than at the periphery, whereas GK delivers fully double (100% greater) dose at the center compared to at the periphery. CK advocates believe that GK's higher dose at the center of the tumor increases the chance of damage to nearby healthy tissue. Also, GK delivers one large dose to the tumor because one treatment is all you can do with GK (this is because a ring is fitted to your head for the treatment and, once it's removed, there's no way to get it exactly in the same place for a second treatment). With CK, on the other hand, a thermoplastic mask is custom-fitted to your head and the tumor's location (in relation to the mask and your bony structures) is plotted into the computer; on followup visits for treatment, they put the mask on your head again and you're ready for the next dose. This flexibility allows CK to apply smaller doses to the tumor than GK with each treatment; together, the smaller doses add up to the same total biologically equivalent dose as you would get with GK's one and only treatment, but (theoretically, at least) the hearing nerve and other healthy tissue has time to recover in between treatments (whereas the tumor supposedly doesn't recover as quickly). Presumably due to the fractionating of dosage, studies show CK yields slightly better results at preserving hearing compared with results for GK. Furthermore, GK's ring is screwed into the head (the screws stop at the skull) to keep it stationary (so that the radiation stays focused on the tumor), a mildly invasive procedure. CK is totally non-invasive: a series of overhead X-rays tracks the patient's head movements and tells the computer-controlled CyberKnife machine which way to move to track any small movements the patient may make so that the radiation stays centered on the tumor. GK advocates say that's all well and good, but GK has about 40 years of track record, whereas CK has been around a lot less time and is not as proven of a treatment as GK. (CK was approved by the FDA in 1999, although Stanford University Medical Center has been using it since 1994 in clinical trials because their Dr. Adler invented CK.)

Best wishes,
TW