size of tumor relating to efficacy of radiation treatment

[hhb]

My husband has received a positive diagnosis of AN ( mushroom in shape 21.3mm x 13.9 mm x 11.5 mm) by an mRI on Monday. On Tuesday we saw 2 ENT's. On Friday we saw a neurosurgeon. Next Friday we see the radiologist. The treament will be the choice of my husband but I am looking for information about post surgery effects from the radiation (especially secondary cancer over the long term). Does anyone know of any medical studies?
Also, has anyone with a tumor this size had the radiosurgery and can relate their expereinces?
The ent's stated that this size of tumor is  large for the radiosurgery to be effective.

[Sue]

Oh Boy...I'm going to jump in here but I'm not sure if I'll be able to answer your question entirely.  I had radiation via Gamma Knife.  I fully support it as an effective tumor killing device. I am not concerned that I will end up with a cancerous AN, because the chances of that are minute.  I am at greater risk of dying by driving a car every day. However, I am 61 now, and that is probably the main reason that radiation was advised for me...although any age group can have radiation successfully. I don't know of any medical studies, but they've probably been done by many groups and someone on this Forum (ah..Bruce? Tony?) will be able to head you in the right direction. 

It's good you are seeking answers to your questions.  Best of luck to you and your husband.

Sue in Vancouver USA

[Mark]

Your ENT is very misinformed about radiosurgery apparently, which continues to amaze me as to how may "doctors" are woefully unprepared to accurately guide patients in decisions with good information.

The general and well accepted size rule on ANs being treated by radiosurgery is around 3 cm, subject to review of the scans of course. Your husbands AN is slightly smaller than mine was at the time of treatment and more so than some others on the board.

There are many posts in the archives of this forum regarding the absurdity of the "malignant transformation issues". In short, there have been somewhere between 6-8 occurences over the years, although several followed whole brain radiation treatment as opposed to true radiosurgery and there were a couple that may have been malignant tumors before treatment. At any rate, the statistical probability is approximately the same as open surgery, which is to say, virtually nil.

Mark

[sgerrard]

Your ENT is very misinformed about radiosurgery apparently, which continues to amaze me as to how may "doctors" are woefully unprepared to accurately guide patients in decisions with good information.

There is some old literature still around, to the effect that radiation is best reserved for those who pose too high a risk for surgery. This is often accompanied by the dual red herrings of "it makes it harder to do surgery later" and "what if it causes cancer". Bruce has made a few posts lately discounting those latter two.

I can't figure out why the more recent successes of radiation are not more widely accepted by the ENTs and neurosurgeons. They seem to be satisfied with evaluations done in the 1980s or so, and haven't budged since. Fortunately there are at least some neurotologists and neurosurgeons who do recognize the value of it.

Thanks to my neurotologist, and posts on this forum, I am finding out that radiation is a very attractive option for treating my AN. Every case is different, but I hope everyone gets the opportunity to give it a fair evaluation for their circumstance.

[linnilue]

O.K.  let me tell you my truth with one caveat, linac is not the way to go.  The 2 best choices are GK and CK with GK having the best outcomes and is very safe.  Linac can be saffe but only in the best hands and even then I'M SKEPTICAL.  I had linac and I ended up with a lifetime of complications from the radiation.  I found out about the damge when I went to Boston, noone here ahd heard or seen radiation damage!  Isn't that interesting.  I was treated like a hypochondriac in need of psychiatric care until I got myself to Boston and learned the raw truth.  Now that being said I would do radiation all over again because I have a small tumor and would not want to risk the other potential side effects of surgery.  as is the beief of this community, you need to seek a treatment center that has an acoustic team in place with much experience.  This posting is not to scare you but to educate you, as I have said before I wish I had known before.  Best of Luck, Holly   

[linnilue]

Thanks Bruce,  As I said, Linac should only be used in very experienced hands .  I am very glad that the ANA has put forth their recommendation that persons with AN's should seek centers where their is an experienced acoustic team...amen.  I want people to learn from my experience that is it necessary to seek the best doctors with the most experience in this area.  I made a huge mistake by listening to my neurologist and not seeking another opinion and not doing any research because he said "it would scare me."  Shame on me for listening to that.  That is why I tell my story.  The doctors here have no clue as to the real side effects to what they do and neither do they want to learn.  You can see them shrivel up when I come into a room.  I am vey aware that my expereince is not the norm but I know that if I hadn't chosen linac here my life would be so much better.  Last week when I saw the radiooncologist he said that I looked so much better than I did 6 months ago and at that time he was very worried about my life.  How's that for a statement?  He never acknowledged that back then when I couldn't even get out of bed or eat a meal becasue of nausea.  This is why I want people to knw that being informed is so important.  The decision for treatment is a serious one and all options should be explored.  I do agree with you about emory but they have a team in place.  I had no team and that is where things went terribly wrong.  I don't want to scare anyone I just want them to know that their are great choices out there but don't go to the local hospital just becasue it is convenient.   

[linnilue]

One more thing, given what has happened to me and the size of my tumor I still would not have chosen surgery.

[Patch]

 HI, MY NAME IS MARK

     I JUST FINISHED WITH RADIATION THERAPY. I WENT 3 DAYS A WEEK FOR 2 WEEKS. THEY WERE LOSE DOSE TREATMENTS. MY AN IS 1.2CM, A TINY BIT LARGER THAN YOUR HUSBAND'S.

     I'M NEW TO THIS ALSO, I WAS JUST TOLD I HAD A AN IN MAY. MY NEUROLOGIST REFERED MY TO A RADIATION DR. HE ADVISED THAT THE 6 LOW DOSE TREATMENTS WOULD BE VERY EFFECTIVE IN TREATING THE AN. I HAVE ANOTHER APPT. IN OCT AND A SCHEDULED MRI IN JAN. I HOPE ALL TURNS OUT WELL.

     THIS IS SCARY FOR ME AND IT FEELS GOOD TO BE ABLE TO TALK TO PEOPLE HERE ABOUT THE AN. 


MARK