Fractionated Stereotactic Radiation Therapy

[patt]

Hi Friends----

I am still trying to make the right decision about my treatment.    I was diagnosed in March with a 2.7cm acoustic neuroma.  Some of you may have read my story already -- I have been here a couple of times already --- a wonderful and helpful group of friends.

I have seen several Drs already.  Neurosurgeon recommends surgery.  Neuro-otologist recommends "Gamma Knife".  Radiation oncologist recommends Fractionated Stereotactic Radiation, which would be 5 days a week for about 5 weeks.   The reason for FSR he said was --- it would save the healthy tissue around the tumor-- to go slow at it.    I can hear out of that ear and I don't want to lose my hearing.   I have limited hearing from the opposite ear already.

Are there any of you out there that have gone with the FSR???  Would really like to hear from you.   If it was an option and you didn't go for it --- why???   If it was your treatment ---- how did it go?

Why am I reading about "Cyberknife and Gammaknife" and not "FSR"?

Thanks for you help --- Patt from Minnesota

[novagirl]

Hi Pat:

Kate (KJ) recently had FSR in Ohio. Here is her post at Christmas:
http://anausa.org/forum/index.php?topic=11408.msg131724#msg131724

I am sure others will comment on their experiences as well. You can also search this forum for "FSR" and see what comes up.

Best wishes to you.

[Jim Scott]

Patt ~

I was diagnosed with a 4.5 cm AN in May, 2006.  I underwent retrosigmoid approach surgery to debulk the tumor on June 7th, 2006.  The operation was very successful.  My symptoms disappeared (I was SSD for some time prior to the surgery and that didn't change), I had no real complications and my recovery was rapid.  A post-op MRI showed that the tumor had been reduced to approximately 2.5 cm and it's blood supply was cut off.  After a 90 day 'rest period' my neurosurgeon teamed with a radiation oncologist to map the FSR he had always planned for me when he took me on as a patient.  In mid-September, 2006, I began 26 FSR sessions; approximately 40 minutes each, Monday through Friday (weekends off).  Long story short: The FSR was painless and I suffered no ill effects from the treatment.  I drove myself on the 60-mile round trip to the FSR facility.  My last MRI showed some necrosis and mild shrinkage of the remaining (dead) AN.  My symptoms never returned and I do just about everything I ever did, prior to my diagnosis.  I tire a bit easier but I'm a 'senior citizen' and have to acknowledge that my body, although healthy, is aging.  I remain SSD but have adjusted to it quite well, although it can sometimes be a mild handicap.  My balance is very serviceable and even if its not quite 100%, I don't find balance to be a problem in my daily routine.

Bottom line: Although every AN patient/case is unique, FSR worked very well for me. If your doctor recommends it, I would encourage you to consider it.

Jim

[Larry]

Patt,

I initially had surgery then with the regrowth decided on FSR versus a one of hit. My research also pointed to FSR as "less risky" than a single dose but thats not based on any fact its just what i felt comfortable with. My FSR was over 5 days.

cheers

Laz

[sunfish]

My coworker's brother is a radiation oncologist, and he said that FSR is a good way to go.

I did Cyberknife, in part because it was close to home.  Too early to say yet if it worked . . .

[Lizard]

I know this is a tough decision, but I think you need to go with what will help to preserve hearing.  I think that FSR sounds like a great option for you. 
Hopefully the Dr's agree with this option.
Good luck,
Liz

[patt]

Hi again FRIENDS ---

It is so comforting knowing that I have a place to go and ask questions.

My main concern right now is the "SIZE" of my tumor!!   It is 2.7cm!!!  Information that I have read tell us that the cut off for Cyberknife or Gammaknife is 3cm.     Why do they have a limit??  When the tumors gets to this size, what are they pushing on??  After radiation, the tumor will still be in my head --- still pushing!!      My Radiation Oncologist recommends Fractionated Stereotactic Radiation.      I am so worried that I am at the maximum for size.
From your experience and research --- if YOU had a tumor this size --- which direction would you go??   SURGERY OR RADIATION???

Can you tell that I am NOT close to my decision??

Any help you can give me would be appreciated!!
Thanks --- Patt from Minnesota

[novagirl]

Patt - there is one person on here (JimmyD) who had FSR on two ANs. One of his ANs was 2.6, the other one 2.2. He has the procedure 11 years ago. You can read his input here
http://anausa.org/forum/index.php?topic=12434.0

It is very encouraging indeed! There are also a few people that had GK and CK on larger ANs and are doing ok.

[Jim Scott]

Hi again FRIENDS ---

It is so comforting knowing that I have a place to go and ask questions.

My main concern right now is the "SIZE" of my tumor!!   It is 2.7cm!!!  Information that I have read tell us that the cut off for Cyberknife or Gammaknife is 3cm.     Why do they have a limit??  When the tumors gets to this size, what are they pushing on??  After radiation, the tumor will still be in my head --- still pushing!!      My Radiation Oncologist recommends Fractionated Stereotactic Radiation.      I am so worried that I am at the maximum for size.
From your experience and research --- if YOU had a tumor this size --- which direction would you go??   SURGERY OR RADIATION???

Can you tell that I am NOT close to my decision??

Any help you can give me would be appreciated!!
Thanks --- Patt from Minnesota

Patt from Minnesota ~

I've already offered you an account of my positive experience with tumor reduction surgery followed by FSR (#2 in this thread) but to answer your question as to what the AN is pushing on; usually, your brainstem, or at least it was in my case. 

The radiation size limit is due to the fact that because of the very small area involved and the many important nerves in and around the area that is radiated, even though the 'beams' are tightly targeted, there is always a danger of radiation hitting the all-important brainstem and doing serious damage to the patient.  That is why my neurosurgeon opted to surgically reduce the size of my tumor, sparing the crucial facial nerves by not attempting to 'get it all' and then had me undergo the 'low-dose' FSR treatment to kill the remaining tumor's DNA, as he put it.  It worked for me.

While the tumor is still in my head' it is essentially 'dead' and not 'pushing' on anything because it is unable to grow - the goal of all AN radiation treatments. 

You might consider 'debulking' surgery, then FSR but those are questions for your doctor.  I can only offer you my specific experience as a guide, not a directive.  Ultimately, you, with your doctor's help and whatever input you can access, will have to make the final decision on treatment.  It's never easy - and we'll help as much as we can. 

Jim

[mk]

In addition to what Jim mentioned about surrounding structures, the other major concern is that larger tumors might swell after radiation, and cause even greater compression. The main structures that can be threatened in such event in addition to the nerves, are the brainstem and the 4th ventricle - CSF fluid flows through the latter, and it if is blocked this can cause hydrocephalus. To avoid swelling it is common practice to use less amounts of radiation in GK, or more fractionated treatments. I think this is why your doctor recommends FSR, and it sounds like a reasonable choice. From what I have seen in the Cyberknife forum, the doctors there say that there is no absolute size limit for CK. It all depends on the location, surrounding structures etc, and of course only qualified doctors can make this judgement.

Yes, indeed whatever compression you have will continue even with a dead AN. The assumption is that if you don't have major symptoms, your brain has already adjusted, and as long as you don't get additional growth, things will stabilize (and sometimes shrinkage is an added bonus).

Good luck with your decision it's a tough one, and there are many factors to consider. I am one of the few that did chose radiation for a similar sized AN. It was an agonizing decision, so I totally understand how you feel. I have explained my reasons in my previous posts  and would be glad to discuss if you send me a PM.

Marianna

Marianna

[JimmyD]

My last treatment for my L.S. AN was I.M.R.T. Intensity Modulated Radiation Therapy. It uses 120 beams of radiation compared to smaller amounts so it can conform to odd shaped tumors like AN's.I had 30 treatments that last about 15 to 20 minutes.Before each treatment an x-ray is taken to make sure the tumor hasn't moved or changed position then the computer readjusts and the treatment begins.It has been 2-1/2 years and so far so good.
My first R.S. AN was treated with F.S.R. in 1999.That was 5- 45 minute treatments of 500 Rads.Too much too fast.AN swelled and I lost hearing two weeks later.Never returned.
Good luck Pat

[patt]

Hi Everyone ---

I want to Thank everyone that has posted and have been so kind to me on my journey.   It is a journey - not knowing where I am going-- and not getting there very fast.  If I can only be as much help to others once I get going,  that is going to be the way I thank this forum.

I am going tomorrow morning out of town to see another "Radiation Oncologist".   I have spoken to one already -- his recommendation is to go with "FSR".  The treatment will be easier on the tissure around the tumor.   He also has "Cyberknife", but isn't comfortable using that on the size of my tumor.      I am going to the "U of M" in Minnesota tomorrow and they have "Gammaknife".  This will be another Radiologist's opinion about "FSR", because they use that too.

I will keep all of you posted how the appointment goes.    Once I get going, I plan on checking in often and letting all of you know how I am doing and to get encouragement from all of you to continue my treatments until I am finished.

Thanks again and I will post again tomorrow.
Patt from Minnesota

[JennyMac]

It seems that whichever doc you go to recommend what they use. Since I have leukemia, surgery just wasn't an option. In fact, jmo, but I feel surgery should be the last option. If one of the other options doesn't work, then you can consider surgery. Fortunately, I found a doc at UCSD that has been doing all three for many years and really laid it on the line. He referred me to another wonderful doc that spent so much time with me. It was decided that my quite old non malignant meningioma in about a year or so. First doctor that brought that up which made sense to me.

The trilogy guy (who I did NOT care for, very arrogant) wanted to do 28 days, which was out of the question due to the distance and other factors like my lack of driving ability lately and my husband's work situation. The GammaKnife doc said there was no difference between all the FSR options, which is just not true.

2.7cm is getting up there, a good doc will explain why FSR is limited to (I think 3cm) at the largest. Could be wrong about that, but you're getting close.

Well, best of luck to you, believe me, making the decision is the hardest part! Take good care, Jennifer

[tichinose]

Patti

Next time you go can you ask if going in the sun after treatments is ok....and if there are any chemicals you should avoid being near...thx