ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: MLB57 on September 06, 2006, 05:12:50 pm
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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
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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)
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Seems like there are a lot of AN's from MA !! .. and only Jim and I in CT ... ;D
Yes, please join us for lunch !
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Please let me know when/where this get-together will be and I'll see if I can make it. Regards, Mary from MA...
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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
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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
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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
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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
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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
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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
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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
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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 ::)
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:) 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. :P
Hope to know soon!! Regards, Mary from MA
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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
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::)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 :)
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It's good to know that Barker wasn't pushing you for surgery, and was honest about saying he didn't think it was the best option for you. That must be very reassuring to you, too! I also met with Loeffler when I was making decisions, and I found him to be very straight-forward and forthcoming. My understanding is that MGH does at least a couple different types of radiation (one of them being Proton Beam), so I'd quiz Loeffler about the different options and the pros/cons of each, and what he'd recommend.
Thanks for the update!
Katie
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Follow-up--Hello everyone--After my consult w/Dr Loeffler (he told me 50% chance of GK further damaging my facial nerve because it is already weakened--he said GK would be okay if my facial nerve wasn't already compromised) and he recommended FSR to better protect my facial nerve I have started 30 sessions of FSR at Mass Gen/Boston MA. I should be donw on Oct 22.
I have the utmost respect for Dr Noren of NE GK Ctr in RI but I had to chose FSR in hopes of a better outcome for my weakened facial nerve. Dr Noren told me his patients who had weakened facial nerves from previous treatment and/or surgery had no further facial nerve damage w/GK, but simply, I was horrifeid to hear Dr Loeffler tell me 50% chance w/GK of hurting my facial nerve so I am going the FSR route... I hope I have made the right decision... Only difference inevitably, I believe, is the time and $ (unpaid time from work) as I believe either treatment will be equally successful...
Anyone in New England/area considering GK should definitely consult w/Dr Noren--he was very gracious in his time and numerous e-mails and he has a wealth of experiene and knowledge!! and I personally liked him!!!
Best wishes to all!! Mary from MA
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Mary - isn't the decision making process the PITS!! My husband had surgery for a meningioma (another benign type of brain tumor) in May of 2004. We found out last November, 2006, that it had started to regrow. For the past ten months we have gone to numerous consults in Florida and Massachusetts. Another surgery was the first recommendation but that's not an option for hubby. He finally decided on CyberKnife at the Beth Israel and is all set for October first. The set up and mask making was supposed to be this Monday, 9/24 but because of an emergency, they had to move it up to Thursday, 9/27. Luckily the treatment date has stayed the same. Hopefully soon the constant 24/7 worrying and thinking about this will lessen.
BTW - I'm pretty sure with BC-BS that all states are reciprocal as long as the physician/facility is a BC-BS provider. We have absolutely no problem using our Mass BC-BS in Florida.
Sheryl
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Wow, already two weeks into the FSR? I know you had a tough time making this decision, but it sounds like you made the right one for you. And that's all that matters.
How are you feeling with 10 treatments behind you now?
Katie
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Hi Katie--I missed you at the brunch but am certainly glad you had a nice get-away with your family!!!
Loeffler at 10 am after my treatment so I don't get back to work until 1:30, so each week I'm losing (unpaI'm feeling okay. Been getting up at 4:30 to catch 5:50 train to Boston--then I walk from North Station to Mass Gen (nice 10 min walk) to my treatment for 7:40 (takes only 15 mins) then back to the train and I get back to Leominster for 10:15 and hop in my car and drive to work in Worc. Every Wed I have to see my Dr id) approx 13 hrs of work--but that's okay as it is a small price to pay to stop my pesky tumor!!! ... 4 more wks of treatment to go!!! One possible side-effect is fatigue--hasn't happened (yet?).. and a possibility of the tumor swelling and placing pressure on my already weakened facial nerve--I'm kinda worried about that as my face has tightened up at corner of mouth and right eye muscles are sore and tighter--Dr Leoffler isn't concerned yet (too soon) but he can put me on steroids and stop treatment for week or so if necessary (he said he only had one patient who needed this detour in treatment plan--so we'll see.)
Actaully I've seen so many people in a more desperate situation than I am (cancers with chemo drip pouches who come in Mon thr Fri and have radiation, bald (mostly women) from either the chemo and/or radiation, etc.) I am thankful I only have a benign tumor.. Started to make freinds with a couple of women and their husbands who have cancer.. It certainly will be an experience i will never forget!!
How are you doing?? Have you had your year MRI yet?? I'm sure it will be clean as a whistle... I hope to see you in November at our brunch!! You'll get to meet the cheeky bloke...
Take care and happy Fall!! Regards, Mary ;D
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>:(Hi Katie---sorry about that messed-up reply--shoulda checked it before posting it!! I like to fool around with the colors and I screwed my message up--I think you can read betweenthe lines--treatments 7:40 am each day then every wed I see Dr Loeffler at 10 am so I'm losing appprox 13 hrs of unpaid time fromwork... But I will be okay financially as it's only for 6 wks...
I'll write again as treatments along to update ya!! Regards, Mary ::)
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Hi Sheryl--It was difficult to make a decision--I couldn't believe it at first as I was told that darned tumor was gone (OR reports from surgeons said somethng like "total resection to healthy nerve") but it happens so now I just hope I've made the right decision.. Outcome will determine that.. I wish I had that crystal ball at times like this!!! But nothing is a gurantee and I am thankful that surgery wasn't my only option.
I'm sure your husband will be in EXCELLENT hands..
Best regards, Mary from MA :D
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How are you doing?? Have you had your year MRI yet?? I'm sure it will be clean as a whistle... I hope to see you in November at our brunch!! You'll get to meet the cheeky bloke...
I had my MRI back in August, and it was pure and clean! McKenna doesn't want to see me for 2 years now (unless something changes). That makes me a little nervous, but he claimed there's simply nothing left on the MRI to start growing again.
Glad to hear you're feeling good! See you in Nov!
Katie
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Mary
I am going to start treatment at MGH in a few weeks. I will be traveling from Maine. I could have the treatmant 5 minutes from my house but i decided to go with Dr Loeffler and his more experienced team. I have had 2 surgeries and know that my facial nerve is wrapped around the tumor.
I understand that it only takes 15 minutes for the radiation but how long past your scheduled appointment do you usually have to wait? I will be riding the bus and want to schedule accordingly.
Jimmy
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Hi Jimmy--I requested and am scheduled a 7:40 AM app't every morning and I have never waited more than 20 minutes--they are pretty quick and efficient and I believe my occasional wait is due to the person scheduled before me probably being late... However the advantage I have is having an early appointment --so if you have one later in the day and if other people are late, well you know that domino effect!! I had a 9:45 AM app't two weeks before treatment started to make a mouthpiece and have a Cat scan w/contrast--that all took maybe 45 mins... The first treatment was Sept 10 and it had to be at noontime (as several techs were there for the first set-up, etc.) and that lasted only maybe a half hr to 45 mins. Every Wednesday we all have to see Dr Loeffler and the earliest he can see me is 10 AM, so every Wednesday after my 7:40 AM treatment I wander around until 9:50 and then go to the waiting room and then he sees me pretty much right at 10 AM--and the appointment is very quick (not much to diiscuss in my case yet anyway) and lasts maybe 10 mins or 15 tops...so you may find you may be at MassGen most all day Wednesday...depending upon treatment and app't times...
If I can shed any more light on anything, please ask... I am into my third week and so far so good... You'll have to sign a sheet listing possible side-effects and one is fatigue... and mine (hand-written) listed possible further weakening of facial nerve...possibility of tumor turning malignant.. You know they have to cover themselves--Dr Loeffler said he's never had a patient who experienced permanent further weakening of facial nerve with the FSR--He did have one lady who they stopped radiation for one week and put her on steroids and then resumed treatment and she is okay. I am going into Mass Gen every day for 6 weeks to have the FSR to kill the tumor AND protect my facial nerve. Of course there are no guarantees but one surgery was enough for me even tho mine was uneventful!!! So I'll take my chances...
Take care!! Sincerely, Mary from MA ;D
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Hi Katie--So glad your MRI was clean!! My first year MRI had a spot and they didn't know if it was scar tissue (that's what they thought as both UMassMed surgeons reports said "total resection to healthy nerve"...) but each year MRI it appeared the spot was larger until June of 2006 when it was definite the thing was growing-- when I saw Dr Barker this year he told me flat out that there had been residual tumor all along (he viewed all my MRIs) and that's why it's growing. SO I am so tickled for you that the MRI is TOTALLY Clean!! That is absolutely great!! You looked great the first time I saw you only weeks after surgery!! So Barker really know what he's doing!!! You'll want to have the follow-up MRIs as Barker requests, even if for piece of mind!!!
Yes, I will look forward to seeing you again in Nov at Maxwell's--Take care--Sincerely, Mary ;D
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Thanks for he info Mary. By the way I had surgery with Dr Barker 3 months ago but he could only get half the tumor out because of the facial nerve. I am waiting to get scheduled ( waiting for nancy to call). I am hoping to start the week of 10/8 so maybe i will see you although i will probably go for a late treatment so i can work half a day in maine. keep me posted.
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Hi Jimmy--Best wishes with your treatment!--and keep me posted--I am at Mass Gen area every Wed (after my 10 am w/Dr Loeffler) until approx 11 am so if you're around it'd be nice to meet up with you!!! Regards, Mary from MA
Ps--Dr Barker did Katie's surgery as well!!