CK Stanford Decision Made

[CattAN]

Hello All,

My journey has begun when I was diagnosed with AN on June 7th, 2015 (actual MRI was on Sunday-doctor called me on Monday).  I will start to document my journey here, as I go through treatment and beyond. 

I would like to thank the numerous members of this great Association and Forum, who gave me their time and attention, talked to me over the phone, responded to my emails, as well as those who responded to my posts here on the Forum.  Okay, sorry if this is beginning to sound like an Oscar acceptance speech

After having 4 evaluations, some in person and some by mail, I came to the decision that CyberKnife at Stanford is my treatment of choice.  I have a date set for the actual treatment next month (September 2nd to September 4th).  I will continue to post progress as I go through treatment, as this will help me as I go through this phase.  I will be alone at Stanford, but everyone on this Forum will be with me at least virtually.

About how I arrived at my decision:  I read many posts on this Forum, especially for those with similar size tumor as mine.  I also did extensive research on Medline and PubMed.  Most of the time I read abstracts, but I was able to receive full articles from authors such as Dr. Steven Chang at Stanford. 

I have to admit that treatment by CK at Stanford was not my first choice, as there are several local institutions here in SoCal that are experts in the field.  But my experience so far with Staff and Doctors at Stanford really swayed my opinion.  I have to also point out the two interviews with Dr. Chang that Francesco Barbera posted on this website were extremely helpful in making me understand all aspects of my condition, and what works best for treatment (based on tumor control rate).

Thank you all.  Keep on posting....

[sunny]

Dear CattAN,

Wishing you a successful treatment and recovery. Your experience thus far seems similar to mine in many ways.
It is amazing, the information and technology that is available to us.
All the best to you.

sunny

[leapyrtwins]

Sounds like you made a great decision.

Dr. Chang has a great reputation; I've been around the Forum a long time and have heard nothing but wonderful things about him.

Good luck!

Jan

[mcrue]

Dr. Chang is top of my list if I ever have to leave my current "watch & wait" status.

If I went the traditional microsurgery route then Dr Schwartz with Dr.  Slattery or Dr. Friedman would be tops on my list.

I agree with "leapyrtwins" and think you made an excellent choice with Dr. Chang.

[john1455]

Add me to the list of those who told you what a great choice you made in choosing Dr Chang. I was very pleased with my experience at Stanford. Experience is the key to any successful outcome and I doubt there are very many places with more experience and expertise than Stanford.

[CattAN]

Hello My Fellow AN'ers,

This is an update after my visit yesterday to Stanford for my pre-treatment evaluation.  I was under the impression that CK is a 3-session treatment.  Much to my surprise, that there is a one-session CK.  I guess I haven't paid enough attention to everyone's posts.  There seems to be still a lot to learn.

So after the meeting, I am going through my reservations and plane itinerary to change dates to accommodate the one-session treatment scheduled for 9/2.  I am still a bit concerned about the aftermath of getting zapped with such a high dose all at once.  Should I be?   I understand the rationale of the doctors, that since most my hearing is lost, then lets use the highest dose to give the most impact.  But from what I have read, those who had GK (one-session CK = GK sans frame) had very severe post-treatment symptoms. Should I be concerned? 

Please chime in, any advice is very much appreciated as this fateful date nears.

CattAN

[rupert]

I'm not sure how you came to that conclusion but,  most people have very few side effects after GK or CK.  I myself had GK and the only side effect I felt was being tired for a few days.  It's been 6 years now and pretty non eventful.

[PaulW]

Don't worry.. Most side effects are caused by a zapped balance nerve and balance organ.
If you get fractionated you actually get more radiation... But over more days...
Is 13gy in one day necessarily worse than 18gy in three 6gy sessions. Probably not.
My neurosurgeon said the effect is the same...

If you have lost your hearing your balance nerve is gone too...
So chances are side effects will be low.

[CattAN]

Yes, I believe my balance nerve is no longer functioning, just as my hearing in the AN ear is gone. It is ironic, I am hoping that the balance nerve is really done with on the right side so I won't have to suffer through a dying balance nerve. This disease is humbling; yet in a way it makes me appreciate things in life I took for granted, such as the ability to walk.

[MG]

Hi CattAN,
I am glad you posted these questions because I was wondering the same thing. It's good to know that they can do it in one session.  I may have CK in the near future. I wish you the best of luck. Keep us posted on your recovery! Sending prayers too.

MG