Growth two years after CyberKnife

[ellyruns]

Hi Everyone,
I have been reading your posts for two years and finally have the courage to write to you for support. Thank you in advance.  Here is my story.

I was diagnosed in August of 2014 and elected to have CK with Chang and Gibbs at Stanford (both amazing Doc's). My AN was 15x9x7mm at diagnosis. All was good after the treatment, noticeable tinnitus and diminished useable hearing which I expected within 1 year of treatment. I had two follow-up 6 month MRI's after treatment (both at Jefferson University - Phila, where I live). 9/1/2015 - 15x10x8mm and 3/15/2016-17x10x9mm.  Stanford said all stable, typical with radiation treatment; AN "plumped up". They gave me the thumbs up for my next MRI in 12 months.  Time to break out a great bottle of vino with hubby.

Okay, now one year later and guess what, AN even bigger.  This time I decided to get the MRI done at University of Pennsylvania. I sent the films to Stanford and now the AN is 19x14x11mm. Chang's NP told me they want to retreat with Cyberknife. Okay, panic, anxiety, etc.  I reached out to Dr. Gibbs and she suggested I come in for a visit. I am leaving tomorrow for consults with both Doc's this week. Dr. Chang's nurse called me back to say they would like to wait 4 months and then repeat MRI. Are all MRI's the same??  Can someone have two CK treatments within two and half years? I know these are all questions for these two amazing Doctors who I trust with my life. However, was curious if anyone else has experienced my drama?

Hugs to all of you and Thank you.
Ellyn from Phila.

[CHD63]

Hi Ellyn and welcome to this forum!

So glad you gained the courage to tell us your story.  Try to take a deep breath and exhale slowly ..... easier said than done, I know.

First of all, as you know, it is not unusual for ANs to swell/enlarge following radiation treatment so I would not be in a huge hurry to re-treat just yet.

Secondly, not all MRI machines are the same.  That is why we urge patients to try to have all of their MRIs in the same imaging facility for consistency.  There can be a 1-2 mm difference in readings between machines.

Dr. Chang is one of the top physicians in the field of treating ANs with cyberknife so I would trust his judgment.

The one thing you need to monitor is any significant change in your symptoms.  If symptoms are interfering with your daily life and/or they are greatly increasing, you need to contact Dr. Chang and/or step up the timeframe for additional treatment.

Best wishes and let us know how things are going.

Clarice

[ANSydney]

ellyruns,

It's been a while since this topic has had a post, but I'd liek to say that Dr Gibbs recoomednmation for a MRI in July 2017 is a good one. I'm also interested in the outcome.

From what I can gather, your tumor has progressed as follows:

[ANSydney]

My post appears to be truncated. I just neatly summarised growth.

Do you have the latest MRI results?