Regrowth

[MGB]

My husband was diagnosed with a 2.5cm acoustic neuroma (2 1/2 years ago). He was 44 years old when diagnosed. Also, he had a cyst attached to the tumor. He had no symptoms other than hearing loss, found the tumor by fluke. He was treated with Gamma Knife by Dr. Sisti in NYC. Since radiation, the tumor died, however, two more cysts grew on the tumor and the original cyst grew larger. In Dec. we went for another follow-up and the acoustic neuroma tumor has grown back to practically the same size as when diagnosed (2.3 cm). My husband currently has a 2.3 cm acoustic neuroma tumor and now has 3 cysts attached to the tumor. It is a blessing he still has no symptoms. My husband lives his life as if the tumor and cysts don't even exist and is extremely positive. Dr. Sisti said as long as he continues to have no symptoms, he does not need to have open brain surgery unless the tumor grows to 3cm. He can never have radiation again due to the cyst growth. Has anyone had medically the same or similar after gamma knife as my husband? If so, what was the outcome? Thank you in advance for your time, I greatly appreciate.               

[PaulW]

First of all stay positive. Radiation mostly works... 2 1/2 years is probably a little early to call it a failure, given the tumour is of a similar size. There is one person on this site that had quite a large AN. It shrank, then it started growing at 2 years and continued for another three years.
I thought radiation had failed for sure... At 5 1/2 years it finally shrank and continued to do so.
So I would definitely listen to the doctors advice and continue to monitor it and avoid the surgery unless it gets to 3cm. It's already had a treatment, the surgery could be unnecessary. An interesting exercise might be to ask what the tumour volume is without the cysts. Ultimately tumour volume is more important than the physical dimensions. Cysts are just a bunch of fluid and is not really part of the tumour. So stay positive in the knowledge that many tumours fluctuate in size after Gamma Knife and many continue to grow beyond 3 years before finally shrinking. The statistics for People requiring surgery within 5 years of gamma knife is low. Only around 2%.

[MGB]

Thank you for taking the time to read my post and reply. It is very encouraging you shared with me that someone's tumor grew and then shrunk after 5 1/2 yrs.!! The tumor volume without the cysts is 2.3cm. The three cyst measurements are 13mm, 6mm and 3mm. Yes, we both feel confident and are following the doctors advice. I am staying positive and I'm always extremely positive with my husband. He has the condition and I don't want him to know my fears. It breaks my heart that he has this medical condition. Even though, I know you can't worry about what you have no control over, would take the joy out of life, lately I have been worrying internally. I was shocked in Dec. when received the MRI results that his tumor that shrunk came back. I remained positive and upbeat in the doctors office in front of my husband but was devastated. When he was diagnosed 2 1/2 years ago, the tumor was 2.5 cm and he only had one cyst. Now the tumor grew back to practically the same size and instead of just one cyst he now has three. I feel discouraged at times but yes, this doesn't mean that the radiation has failed yet. Thank you for the reminder!                                                     

[MGB]

Also, it is a blessing he lives his life as he did before the tumor. He has no symptoms at all other than hearing loss. It is remarkable. He still plays sports as he did before, skiing and baseball. He is happy & positive.