Trying to decide about FSR or Cyberknife after surgery

[vap119]

Hi Everyone,
My husband had surgery almost 3 years ago to remove a huge AN.  Unfortunately, they were unable to remove all of it & it has continued to slowly grow.  The dr. who has been following the case has recommended FSR, but we also wanted to investigate CK as an option. They do not do CK where his current dr. is.   So we want to make sure that we're becoming informed about all the options & the best treatment for his case. He had a lot of facial nerve damage, so that is why they have held off any further treatment.  We once again have lots of questions.  The residual tumor is still pretty large(15x8x14mm) & he has been experiencing headaches recently, so I was wondering if there could be a problem with tumor swelling from radiation if he were to have it.  Has anyone had any experience with this?  In addition, the tumor is right up against the brainstem.  Also, are there any recommendations for top notch CK doctors on the east coast (we live in VA) that we could consult with?  We'd like to investigate the differences between CK and FSR for his situation.  Also wondering if another surgery would be the way to go, but neither of us really want to do that if we don't need to.  We've sent his MRIs to House & are awaiting a call from them to discuss the case.  I've spent a lot of time reading through the info on this website.  Thanks so much to all of you for sharing information with others.
Vanessa

[Jim Scott]

Hello - and welcome, Vanessa ~

I'm sorry to learn of your husband's AN regrowth but glad that you were able to find and use the ANA website and these Discussion Forums. 

Radiation to stabilize a previously-re-sectioned AN is fairly common these days. I underwent 26 FSR treatments 90 days after a partial AN re-section as a precaution against possible re-growth.  So far, so good. 

Unfortunately, I live quite a distance from you (Connecticut).  However, Dr. Johnathan Haas, the radiation oncologist that 'mapped' and supervised my FSR treatments, practices in Mineola, Long Island (a suburb of Manhattan).  Dr. Haas is a brilliant, personable, caring physician that I can recommend without reservation, although I'm sure you would prefer a doctor located a bit closer to your home - and I hope you can find one. 

Here is a link to Dr. Haas and his facility: http://www.winthrop-radiology.com/radiation_oncology.html in case you can use it.     

Jim

[ppearl214]

Hi Vanessa

Jim has given you terrific insight, personal experience (where he went through the identical treatments as noted for your husband) and reference for FSR and a wonderful start for your research.

I'll pick up on your CK question.  

My AN was 1cm (10mm) and "kissing" my brainstem.  Lower "fractions" of radiation does help with low dose rads hitting surrounding structures and regardless if CK or FSR, may be the route for your husband.  For my personal experience, I had CK done in 5 "fractions", with the same concern of tumor swelling against the brainstem.  For me, the swelling was kept in check by use of steroids (Decadron) and kept closely monitored by my radio team to make sure we had the upper hand on it.

I went to the CK Patient Support Website (http://www.cyberknife.com) to find CK centers near you in VA (see list below) and remembered that Georgetown in DC is also highly reputable for CK (their info also noted below).

The CK Patient Discussion Forum (http://www.cyberknife.com/forum.aspx) is "manned" by radio docs that volunteer their time and energy to answer patient questions (they receive no stipends.... only our harrassment and gratitude) so it may be worth posing questions to them as well. They are all experienced in CK, GK and other radio protocols and may be able to help give a "professional" perspective to your husband's unique situation. Just a thought......

Hope this helps.
Phyl

===========================================

Georgetown University Hospital (CK1)
3800 Reservoir Road, NW
CyberKnife Installation #1
Washington, DC 20007  USA
Phone: (202) 444-2000 Cheryl Savage
Alternative Phone: (202) 444-2000

Georgetown University Hospital (CK2)
3800 Reservoir Road, NW
CyberKnife Installation #2
Washington, DC 20007  USA
Phone: (202) 444-4639 Cheryl Savage
Alternative Phone: 202) 444-2000

Carilion Health
2013 South Jefferson Street, SW
Roanoke, VA 24033  USA
Phone: (540) 981-7377
Alternative Phone: (888) 301-6029 (toll-free)

Sentara Advanced Radiosurgery Center
Sentara Norfolk General Hospital
600 Gresham Dr.
Norfolk, VA 23507  USA
Phone: 757-388-3483
Alternative Phone: 757-388-2061

Virginia Hospital Center
1701 N. George Mason Drive
Arlington, VA 22205  USA
Phone: (877) 842-2923
Alternative Phone: (703) 558-8558

[sgerrard]

Hi Vanessa,

Phyl gave you some great references for the CK forum, and the Georgetown CK center. I wanted to make a couple of comments, which are based on reading about patients here on the forum, and are not official medical observations.

One is that when a patient has radiation for a leftover after surgery, swelling seems to be less of a problem. That's not guaranteed, of course, but my impression is that the surgery has already cut off a lot of blood supply, etc., and the remainder is already weak. It just needs a little zap to finish it off. 

I would add that getting CK (or FSR) from a more experienced center that has dealt with surgical leftovers before is a good idea. That is probably more likely at Georgetown than the places in Virginia.

Steve

[vap119]

Thanks for the great info.  We spoke with a dr. from House & he actually recommended Gamma Knife.  Totally threw a new variable into the equation.  Anyway, we are definitely going to check out Georgetown & get a consult with them.  We'll probably also look into Gamma Knife since the dr. at House felt pretty strongly that it would be the way to go.  I'm thankful that this forum is here, it's provided us with a lot of really helpful information. 

[sgerrard]

For zapping a post-surgery residual tumor, there is probably not much difference between doing GK and CK. For GK, you can't do better than the U. of Pittsburgh Medical Center. I like CK because it is higher tech, but that's just me.   

Steve