FSR - Anyone had it?

[shoegirl]

Hi! I have just recently been diagnosised with AN in the last week and I have been to see a Neuro-Otologist.  He seemed very up to date on current treatments.  He suggested Fractioned Radiation (FSR) even though he is a surgeon. Which I found encouraging.  I am a little confused about all the different types of radiation available.  I understand the difference between GK and FSR but I am confused about CK and FSR.  Dr. says they are the same by CK has a fancier name?

I would be interested in hearing from anyone that has had FSR?  I am seeing a Radiation Oncologist a week from tomorrow.  I still have all my hearing. Only side effects so far are eye twitching, fatique, and occasional headaches. My AN is 1.3cm x 1.3cm.  Would like to know what side effects you had after FSR and what questions I should be asking the radiation oncologist?

This is all very new to me.  I really want to make the best decision as to treatment and I am heavily leaning away from surgery.  Dr. said if he had AN he would do FSR.  Very interesting being he is a surgeon.  He also recommended I do something soon so that I don't start losing my hearing.

Would also like to know how many of you got second opinions? Second opinions can be confusing with AN because there seems to be so many different schools of thought on treatment options!  Would seem certain that second opinions would definitely be different than the 1st?   

Any advice would be greatly appreciated! Thank you! Suzanne

[sdinapoli]

Suzanne,
    I am just curious on how the tumor was discovered??  I had a tumor around your size at around 1.2cm but I had lost a lot of hearing prior to surgery and all of it afterwards. Before surgery I as unable to use the telephone on the AN side and the muffled sounds were extremely low and barely detected. I found a report from an ENT office I visited back in 2001 following complaints of hearing loss, tinnitus, fullness and pain within the AN ear and the report only mentions eustachian tube dysfunction. Six months later I had a hearing test which confirmed the loss so an MRI was suggested. I just looked the other way and never had the MRI done. It wasn't until a car accident in early 2004 when I actually had an MRI done following neck discomfort from the accident (hit from behind while stopped at red light). That's when the AN was discovered. It's great you found this site for guidance so early especially since you do not have any hearing loss. I would also contact House for their opinion especially sine they are preserving hearing these days at much higher rates of success. I am glad you are also exploring all options and I sincerely hope you keep all that hearing no matter what treatment you elect. These tumors are so unpredictable and present symptoms so differently from person to person.    Steve D   

[shoegirl]

Hi Steve,

I found my AN by accident.  I was doing a followup MRI for a pineal gland cyst.  I am suppose to go every year but haven't gone in 3 years.  They did 2 scans one without contrast and one with and there it was!  My Dr. had me get the scans from 3 years ago and the AN was there but the Radiologist missed it.  It was very hard to see.  And it is growing - so I need to do something with it before I lose hearing.  The funny part is that I had more symtoms 3 years ago than I do today.The only symtom I have is eye twitching, and the occasional headache.  From time to time I feel dizzy but I also diet and it could be from the lack of sugar.  I feel very fortunate, I could be in an entirely different situation.  I am really scared of surgery.  I just feel like I will loss my hearing for sure and have facial paralysis.  Everyone I have talked to (doctors) seem to believe that when surgery is done you ultimately lose hearing and have some degree of facial paralysis.  I haven't read anyone's posts yet that lead me to believe otherwise. 

I am going to go to Barrow's Institute for a second opinion, although I am not sure if they do FSR over more than 5 fractions?  I guess I will find out.

Have you had treatment for your AN?

Thank you for your support.

[jrhafer]

Hi Suzanne,

In 2002 I found that I had a 3m AN in my right ear.  It was discovered after trying to find out what was causing my increase in tinnintus.  I had no other symptoms. My hearing was normal and I had no dizzy symptoms.

I did a "watch-and-wait" for 3 years while I monitored the growth and researched all my options.  By 2005, my AN had grown to 4.5mm so I felt I should do something before I lost some hearing. I still had no hearing loss.

I looked into md-fossa surgery, FSR at John Hopkins, GK at Mayo and CK right here in St.Paul.  I decided to have my treatment locally so I went with Cyberknife which consisted of a 3 day out-patient protocol.

It has been 3 months post-treatment.  I had no physical side effects after CK.  In fact, I went back to work the day after my 3 day treatment.  My hearing is still perfectly normal and I have had no dizzyness or facial paralysis.  But it did come with one other one side effect. I have an increase in tinnitus which is a high pitch sound, much like what an old TV set's piture tube emits.  It comes and goes but seems to spike in the presence of loud noises.  I get depressed with it at times, but I guess I am lucky for I could have had a lot worse issues.

I have not had a follow-up MRI yet so I can not say if my AN has changed but so far, my #1 concerrn of hearing preservation is still met.  No hearing loss or change since treatment.  I am also at the 3 month mark which is where the tumor swells from the radiation treatment.  They say it can take months for the radiation to show its effects on the tumor.

Good luck on your decision.  I know it is hard with all of the options and opinions.  The biggest problem I found is that each doctor has his or her opinion as to which is the best option.  Surgeons seem to always bash radiation.  Also, remember that just because a treatment is new, does NOT mean that it is no good!

Hope this all helps.

John

[RRM]

Suzanne
I was diagnosed in Feb 03 with a 1.6 AN.  After exploring the treatment options for about two months (mainly surgery or FSR), I decided on FSR at Univ. of MN.  I had 30 treatments of 180 rads each (5,400 total).  There were no side effects during or after the treatment (other than the aggrivation of commuting 30 miles to the daily treatments for 6 weeks!).  I have had 4 follow-up MRIs and am now on an annual schedule (next one is March 06).  So far, there has been no growth in the tumor.

I had 40% hearing loss prior to treatment and have lost maybe another 10%.  I still have functional hearing in the affected ear, but consciously try to choose seating in meetings and other situations where I am not as dependent on my AN ear.  I had and still have tinnitis (unchanged since treatment).

Bottom line, I am VERY satisfied with the results of FSR for me.  It has done what they had hoped (no tumor growth at this point) and for the most part, preserved functional hearing.  If I had it to do over again now, I would proibably research the CyberKnife and Gamma Knife more, but they didn't seem to be as available in our area when I was going through the decision-making process as they are now. 

If you have any questions, please let me know.
Best wishes,
Ron

[shoegirl]

Ron,

Thank you for sharing your experience with me.  I am trying to figure out if Cyberknife or FSR is better for me.  I am meeting with an Radiation Oncologist this week and very anxious to hear his recommendations.  The Neuro-Oncologist I saw last week felt that FSR is the way to go - because of the reasons you mentioned.   He said he would choose FSR if it was him.  My tumor is slightly smaller than yours 1.3cm x1.3cm. - it will be interesting to see how many treatments they recommend.  I really liked what the Dr. had to say about FSR: minimal side effects if any, very low risk of hearing loss, no risk of facial paralysis, and he mention exposure to surronding brain tissue is lower due to dosage?  These are things he told me I haven't seen them documented.

I do have one question for you, was your FSR done with a linear accelerator?  I am confused about the different types of equipment used for radiation.  Hopefully I'll understand better after Friday.

I hope your results continue to be in your favor.

Best Wishes, Suzanne 

[RRM]

Suzanne,
Mine was done with a linear accelerator. 

I had a similar experience with two different neuro-surgeons recommending FSR rather than surgery.  They were willing to go the surgery route if that was my choice, but they made it quite clear that they felt that the FSR approach was a very good option for me.  After hearing that, my choice was easy. 

I had done quite a bit of research on-line prior to the consults so that I didn't go in totally unprepared.  I could feel like I had some intelligent questions and I felt very comfortable that they were being very honest with me.  Being prepared might have caused the MDs to be more objective, but I think that they would have made the same recommendation either way.  Most patients probably have done their own research these days, as it is quite a scare to initially get a brain tumor diagnosis, so I was probably not unique.

Good luck with your next visit,
Ron

Ron 

[philadelphia1]

I am on my way to FSR (25 to 30 treatments) at Thomas Jefferson University in Philadelphia in December. Although I can't help but being a bit nervous, everytime I go through my decision making process I end up in the same place.  I have a small tumor (~1 cm) and have minor hearing loss, some tinnitus, and manageable balance problems.  My goal was to control the tumor with minimal side effects (and a goal of hearing preservation) and think FSR is the best option.

For a while I couldn't decide and kept a journal that said "If I had to decide today, I would ..."  The answer changed almost daily and tended to reflect the last thing I read.  Finally, I got clarity -- a lot had to do with finding doctors that made me comfortable as well as having the right credentials.

If I didn't already have these (modest) symptoms, I would be extremely tempted to Watch and Wait.  This isn't something that is going to kill you -- if fact it may never even become a problem.  As long as you don't slip into denial, there really is not reason to rush into anything.

As far as second opinions go, it was useful in my case.  All of the docs I saw were ultra-qualified and all gave me similar options.  Talking to more docs increased my comfort level with my decision.  But there is no magic number -- go with what feels right to you.  There is a good chance you will get multiple conficting opinions that can be hard to sort out.

ML
Philadelphia

[shoegirl]

ML,

Thanks for your advice.  I am torn between FSR and Cyberknife.  I recently saw a Radiation Oncologist who recommended 10 FSR treatments over ten days.  He says there is all most no side effects (maybe some hair loss).  I am very tempted to go this route, but CK is very effective as well.  I am hoping at my next Dr. appt (this will be my second opinion) that they will be able to very clearly explain the advantages of one versus the other.

My goal is to get my tumor treated by the end of the year.  I would really appreciate it if you could keep me posted on how things go for you. 

I wish you all the best and hope your FSR gives you the best possible outcome.

Suzanne

[philadelphia1]

I think both FSR and CK are viable options.
Both are good at tumor control.
Both have relatively easy going side effect profiles.
This is going to turn out fine -- I believe it for me and for you. 

If one doctor or facility makes you feel more comfortable or confident, don't be afraid to listen to that "intangible factor." It is not something that shows up in a scientific study, but I think it can make a big difference in the outcome for an individual person.