Tumor Regrowth post surgery....options for Radiation or Repeat Surgery

[ktmacintosh]

I have recently been told that my tumor regrew 8 months post surgery.  It is still a small tumor but growing at a rapid rate.  They say I must have treatment, either radiation or repeat surgery.  I had some significant surgery complications and am considering radiation; however, I am concerned about regrowth post radiation and the impact on potential surgery if it does regrow.  Also, my doctor mentioned that there is a 'life limit' on radiation.  I wasn't sure if that was related to the specific area of radiation or to all areas.  I would appreciate any input. 

Thank you!

[Blw]

Gamma knife and Cyber knife are the two main radiation types, with a couple of others also. Look for large centers that advertise doing vestibular schwannomas. You want someone that does a lot of them and can give you advice from experience. Also, if you can find someone that does surgery and radiation, that reduces bias. The big centers are generally all very good because they are geared toward their "customers", and they operate like clockwork. Most communicate quite well to boot. I have heard two different opinions on aggressive growth regarding radiation response. From my own personal experience, I went to UVA for GK. Very old center active for decades, the head (Dr. Sheehan) trained with the first center in the US and was fantastic. Great team, all MD/PhDs. Dr. Lunsford at Pittsburgh I believe opened the first US center and trained with the inventor. He and Sheehan publish a lot, so they have lots of experience. I also visited Stanford for Cyber knife (Chang), and they were fantastic as well, but insist on seeing you in person. I chose UVA because Pittsburgh in January wasn't appealing, and Sheehan I swear will email you from the shower. The guy was always accessible. Also, Cyber knife is newer, and GK has a longer track record of success. Mine was on my facial nerve, so I did a lot of research. Search McCrue on this site, he went to UVA as well.

[ccooper]

Following my first surgery last Feb, a sizable tumor remained that grew rapidly to the point of needing another surgery five months out. Because of my age, the rapid growth, radiation was not recommended. The second surgery was much less of an ordeal than the first. I had already lost and recovered my balance. My hearing was already gone. They actually fixed some issues from the first surgery so I left in better condition. Nutshell, a second surgery is without a doubt a horrible situation to be in, but recovery was easier because you know what you're in for, and most of the "damage" is usually done in the first. Open to talk in detail if you'd like. Good luck! Positive thoughts all around.

[Kathleen_Mc]

Hi
During my years of being monitored with my regrowth I read and read articles about this very choice, in the end I went ahead with surgery.....after all the benefit of Cyber knife/Gamma knife would be saving nerve functions and I had already lost all of that the first time around so I just wanted it out. I think it is a personal decision, for me the regrowth had to be dealt with only because psychologically I couldn't handle knowing it was in there and growing so the years following gamma knife would have been difficult with the constant worry.
Kathleen

[LakeErie]

I had a radical subtotal removal of a large tumor in 2011. At 4 years the tumor remnant showed increased enhancement on the MRI and growth was determined at 5 years.
I had GK on the remnant at the Gamma Knife Center at the Cleveland Clinic on Oct 12 this year. I was told by the co-director of the center that the Clinic had a 98% tumor control rate at 5 and 10 years with AN's.
With GK failures over time, the Clinic's experience is 60% tumor control rate with 2nd treatments.  With these rates I had no problem accepting the treatment recommendation.
My only choice was to not accept GK and wait for the tumor to grow until surgery would be necessary. My original surgeon, also at the Clinic, advised me post surgery that the tumor probably retained a blood supply so it would probably resume growing at some point and he would then recommend GK, so I was prepared to make the decision.
If GK makes later surgery more difficult, if surgery even is necessary, is something I'll have to deal with then. For now, preventing the need for future surgery with odds over 98% on success is the right choice for me.

[Willbur]

I have recently been told that my tumor regrew 8 months post surgery.  It is still a small tumor but growing at a rapid rate.  They say I must have treatment, either radiation or repeat surgery.  I had some significant surgery complications and am considering radiation; however, I am concerned about regrowth post radiation and the impact on potential surgery if it does regrow.  Also, my doctor mentioned that there is a 'life limit' on radiation.  I wasn't sure if that was related to the specific area of radiation or to all areas.  I would appreciate any input. 

Thank you!

Do doctors have any explanation as to why there is regrowth? Has it ever been studied before?

[PaulW]

Not all AN's are created equal. Some have a slightly different makeup and grow faster.
Many surgeons leave a small slither of AN behind to preserve the facial nerve if it does not seperate easily. It's a common practice. But it doubles the chance of regrowth.. from around 1% to 2%
Sometimes the tumour is just difficult to remove so they leave behind more..
Comes down to the skill of the surgeon, and your AN. In the past they tended to remove a lot more. But that left people with a lot of complications.