AN re-growth--Gamma here I come!!!

[MLB57]

Hi everyone--thanks, Deb for directing me to post here instead of the "Discussion" area. I have e-mailed and heard back from Ellen and Kathy and am grateful for their replies and kind words. My story--1 cm rt AN totally removed via retrosigmoid, Jan 2001, U MassMed Ctr, Worcester, MA. Five years later MRI shows re-growth--Decided w/my  neurosurgeon that radiation was best due to small size and honestly altho I had no post-op complications, I didn't want to undergo surgery again--I did hrs of research and am convinced Gamma w/ Dr Noren (RI hospital) is my best option. By the way--I do not regret having microsurgery first time so for all of you trying to decide don't let that scare you--please make your decision based on your situation. If it hadn't re-grown all would be fine today. Anyway, I realize either radiation or surgery has a 5% re-growth chance... For me, now that surgery didn't stop it, I will do Gamma and hope that will be it!!
  I am relieved to have my BC/BS out-of-state referral approved (wasn't out of network, only out of state) and am awaiting Consult to be scheduled. FYI--I wrote a letter stating my reasons for Gamma w/Dr Noren and also had Prof of Rad Oncology write on my behalf so I think that helped get the approval. I have a daughter and son--my son, David, recently proposed to his girlfriend and they plan to marry JUly 15, next year, so I don't want to burst their bubble yet and will tell them as soon as I know about the consult. I can assure them I have done tons of research and Gamma is my choice. Funny, 'cause my neurosurgeon prefers Cyberknife  because of framelessness and Prof of Radiation Oncology MD at my hsopital says Gamma is best due to track record. So every "expert" you talk to may have differing preferences. I am not thrilled about the headframe but have been told it's really nothing... Can't wait to meet Dr Noren...
  I welcome any comments, questions, whatever--we all can support each other on our "Survivor AN" reality drama!!  Best wishes to all!! Regards, Mary from MA

[krbonner]

Hi, Mary!

I've heard great things about Dr. Noren and his track record.  You'll be in good hands.  And in a few weeks, Ellen will have a lot more details for you, I'm sure.  And interesting note about BC/BS (my insurance, too) - I'll have to remember that if I need to go out-of-state for radiation or other treatment later on.

Please join all us New England types for the fall brunch being planned in Worcester!  You can chime in on dates in the NE Fall Brunch thread in General Discussion.

Katie
(temporarily appropriating the role of Assistant Cruise Director)

[Joef]

Seems like there are a lot of AN's from MA !! .. and only Jim and I in CT ... 

Yes, please join us for lunch !

[MLB57]

Please let me know when/where this get-together will be and I'll see if I can make it.  Regards, Mary from MA...

[ppearl214]

Hi Mary:

Brunch thread:

http://anausa.org/forum/index.php?topic=1818.30

Well, you have certainly had your hands full, that is for sure.  My hope is that Dr. Noren can certainly help that booger in your head (as well as Ellenvig's) as he is the best GK in the New England area.  Question... since this is regrowth, I have heard minor notations of GK being done, but questionable whether GK can be "redone". I hear Noren is claiming to do re-GK if need be. When you meet with him, as some have asked me about it, can you please find out about his take/method of redoing GK for regrowths if initially treated by GK.  I know CK can be redone for regrowths but have not heard much about GK being re-done (gawd forbid).  I'd love to get his take on it.... and if you can share it with all of us at the brunch, boy,that would be awesome!

Looking forward to meeting you.
Phyllis

[MLB57]

Hi Phyllis--I posted a "yes" for the brunch get-together Nov 19 at Maxwell Silverman's( in Worc I believe?) Hope NE weather behaves for us!! Regarding having GK re-done, I believe in my hrs of research I did read somwhere that it can and has been redone before.. But I will certainly ask Dr Noren once I get to see him. (Consult to be scheduled). My best to you... Regards, Mary

[ppearl214]

Hi Phyllis--I posted a "yes" for the brunch get-together Nov 19 at Maxwell Silverman's( in Worc I believe?) Hope NE weather behaves for us!! Regarding having GK re-done, I believe in my hrs of research I did read somwhere that it can and has been redone before.. But I will certainly ask Dr Noren once I get to see him. (Consult to be scheduled). My best to you... Regards, Mary

saw the brunch post Mary and thrilled you'll be able to join. Yep, that's the Maxwell's and we had a great time last time.  Pics on my frapr (see link in my sig line here) of the gang.

Thanks for asking Dr. Noren on that... I've heard conflicting... I've heard he is doing "fractionated GK", but curious on his take on re-Gk if already GK'd an AN. 

Phyl

[john twoffer]

Repeat GK has been done sometimes. My research on this board shows that:
1. Dr. Steiner Virginia has done over 2000 GKs with over 50 repeats over years and years.
2. Dr. Gott San Diego 3 times
3. Georg Noren in Providence RI has done repeat GK - says ellenvig

[ppearl214]

Repeat GK has been done sometimes. My research on this board shows that:
1. Dr. Steiner Virginia has done over 2000 GKs with over 50 repeats over years and years.
2. Dr. Gott San Diego 3 times
3. Georg Noren in Providence RI has done repeat GK - says ellenvig

John, thanks for the heads up on this. Do you have any links to publications showing such?  That way, those that ask me, I can point them to the links.

Thanks again,
Phyl

[MLB57]

HI everyone--Well, today I got scheduled for my Consult w/Dr Noren for Sept 28. I picked up my MRI films and made copies of my med records regarding AN so I'm all set to see him. Have to tell my son (age 35) and daughter (age 29) about my situation and one of them will accompany me to the consult and I'm hoping Dr Noren will put us at ease... I am still scared, I have to admit, about the propspects of Radiation being zapped into my brain, so I am anxious to talk w/Dr Noren... Ellen told me she "really liked" him as he was  so"confident and kniowledgeable". And I might add I am eager to hear all about Elen's GK treatment, scheduled for Sept 22. Sounds like we'll have a great group meeting for brunch!! Looking forward to meeting everyone!! Talk to ya again later... Regards, Mary

[john twoffer]

Phyl,
I am quite aggravated that no one has published on this topic. It seems to be a rare situation and there is not a single paper that I know. Only the word of the doctors first or second hand as the case may be.
John

Repeat GK has been done sometimes. My research on this board shows that:
1. Dr. Steiner Virginia has done over 2000 GKs with over 50 repeats over years and years.
2. Dr. Gott San Diego 3 times
3. Georg Noren in Providence RI has done repeat GK - says ellenvig

John, thanks for the heads up on this. Do you have any links to publications showing such?  That way, those that ask me, I can point them to the links.

Thanks again,
Phyl

[MLB57]

Good morning Everyone--I got a call from Dr Nioren's office yesterday to reschedule my Sept 28 app't as he had 2 "emergency malignancy" cases. So I'll see him now Oct 19. That's okay as it sure puts this all into perspective when I hear of other people's more desperate situations!!  Gotta run off to work!! Talk to ya later--Take care now--Mary from MA

[MLB57]

  HI Everyone--saw Dr Noren Oct 19--NIce man, very unassuming and gracious and seems to genuinely enjoy people--We did have to wait 2 hrs, but well worth it as he spent almost 1 1/2 hrs w/my son  and I. He is not certain that my AN is re-growing as I only could locate and brought the 2004,2005 & 2006 films which showed minimal difference.. So, got back here Friday and called Supvr of Films at UMassMed Ctr and he located 2002 and 2003 films and they destropy films after 5 years--So anyone out there--take notice--might be a god idea for you to hold the films at your house!!!

So my son, David will drop off the films to Dr Noren this week... In any event, Dr Noren said my health is not i danger and I could wait until next year to have another MRI (if I couldn't locate the films)--but now that I have them, hopefully he can tell me if it is growing or if it's just scar tissue.

Hope to know soon!!   Regards, Mary from MA

[ellenvig]

Hi Mary,

I'm so glad you had a good consultation with Dr. Noren and that he doesn't feel you need immediate treatment!

Good luck and see you at the brunch!

Ellen

[MLB57]

 ::)Hi everyone--A UMassMed MD of mine didn't want me to rush into radaition (was all set to schedule GK) and suggested I consult w/Dr Barker at Mass General--I had my Consultw/Dr Barker today and he told me that my facial nerve (altho not cut) was traumatized and weakended from surgery and altho it is very resilient an already compromised one may not bounce back like a non-traumatized one (my words)-- he felt the FSR Lineac would give the facial nerve time to recover between treatments. He recommended I consult w/Dr Loeffler at Mass General so I will make another trip to Boston but I want to do lots of research in the meantime--pros and cons of one-shot (Gamma) VS FSR over several days/wks. Dr Barker told me regarding surgery that he could take it out again but w/10% or higher chance of further damage to my facial nerve--and that's all I had to hear (I was against repeat surgery anyway). He said there is no sense in wait and see as it is clearly re-growing (I agree with that also) and he wasn't concerned with the possibility of radiation turning cancerous (my main concern) so I feel at peace I chose the right option with radiosurgery. 

So now I must decide which radiation to have and when..   It's certainly not fun having to deal with this again but I am thankful surgery isn't my only option...  Mary