Radiation for large tumor?

[ASG]

Thanks nftwoed,

For whatever its worth, I was told the 50-60% chance of hearing retention was 10+ years out, with a 75% chance of serviceable hearing 5 years out.  Whether that's optimistic or not I have no idea.  I can only hope that's Lunsford's best guess based on his clinic's outcome data and not used car salesman talk.  Another argument in favor of GK- if I lost serviceable hearing but still had some nerve functioning, I could boost hearing in that ear with a conventional hearing ear (which obviously would not be possible with translab).

I hadn't heard anything about risk of exponential cyst growth following GK but the scenario you describe sounds horrible.  Did that happen to you?

I asked Dr. Lunsford about debulking and radiating the remainder because no one had suggested that and I was also wondering about it.  Dr. Lunsford said this approach would be useful if someone had mass effects, such as headaches or vertigo caused by intracranial pressure due to the tumor.  In this case the only way to get rid of the mass effect symptoms is to do surgery to alleviate the pressure.  If someone doesn't have mass effects, even if the tumor is large, there is no need to do surgery and you can just radiate the whole thing. 

Thanks for listening!  Its helpful to write things out instead of getting lost in thought. 

[nftwoed]

Hi ASG;

   My feeling is since your AN is large, radiation of the cystic component should be discussed with your Dr. Likely, more than one Dr. if that Dr. does not recognize/acknowledge the inherent danger.
   The risk of an expanded cyst can extend months beyond the actual GK Tx. There was a woman I found in searching PubMed, who died 15 mos. post irradiation due to blood flowing into her AN because of a vastly enlarged cyst caused by radiation.

    Following is a conclusion of a different case than the above:

    CONCLUSION:

"Our case report is a novel demonstration that a cystic VS that has regressed after GKS is still at risk for expansion. The mechanisms responsible for radiation-induced cystic tumor expansion have not been thoroughly elucidated. The risk of unpredictable tumor enlargement should be discussed with patients when considering GKS for cystic tumors."

   No; I personally didn't have a cystic AN, but have read a small handful of troublesome stories over the past 13 years or so. Not meaning to scare you away from GK but just offer information.

   Re, hearing retinance, I stand by my original statements.

   Best wishes in all. To me, debulking then radiating still seems safer and may have a better chance of stopping growth and maybe even getting rid of the AN.

[ASG]

So just to cap the thread off (wouldn't want to leave anyone with a cliffhanger):  I decided to go with Gamma Knife with Dr. Lunsford at UPMC.  I'll spare everyone the full rationale for this choice (PM me if interested in the details of why I chose this) and will just say that the goals of Gamma Knife and the treatment team, and the specific risks and benefits of Gamma Knife, were the best fit for me. 

My GK date, pending insurance approval, is September 20th.  I will be getting a Primanti Brothers sandwich before and afterwards as part of my treatment plan.

Thanks to everyone for listening and chiming in to help me reach this decision.  Robin, if you hadn't told me that the original person I talked to at Pitt was not part of the GK team (which I had assumed ), I'm not sure where I would have ended up.  Thank you!

[Suu]

What a great conversation this is. 
Thanks for sharing and inviting us to share our thoughts along the way.
Good luck with it all on the 20th and hope that sandwich is a beauty!  Will be looking forward to reading the next chapter. 

[robinb]

Hi Adam-

Glad you were able to reach a decision; hard parts over now.

Will be sending good thoughts your way on September 20th and after for a great outcome.

When I was there, I didn't know about Primanti!

[rupert]

    As a former UPMC GK alum,  I can attest that they are the platinum standard in regards to GK.   First class all the way. Not only did you make a well informed decision, you made a wise one.  Good luck to you.

[mk]

Congratulations on reaching a decision. This is half the journey. Best wishes for a successful outcome.

Marianna