ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: jacktripp on August 02, 2007, 01:40:43 pm
I am newly diagnosed with AN and live in Maine. I want to go to Boston for treatment. I am from Boston and have a place to stay for treatment there. I need any recommendations for both surgeons and Radiation Therapy Docs-Hospitals as I weigh my options.
Please anyone help!!!!!
Welcome to the forum, though I'm sorry you have to find yourself here.
There are many of us around here that have been treated in Boston. Hopefully some of the others will pop up soon. Personally, my neuro-ENT is Dr. Michael McKenna at Mass Eye and Ear. (Many of the New England ANers see McKenna.) When I had surgery last fall it was done at MGH by Drs. McKenna and Barker. A fantastic surgical team, and I have had no residual issues from the surgery. But there are other options around Boston, especially for radiation. Dr. McKenna is one of the area's experts on ANs (and won't push for treatment that doesn't need to happen yet), but he does have the limitation of only having the MGH radiosurgery teams available and there are other types at other hospitals.
In case that's not confusing enough...
Phyllis did a great job summarizing the Boston area options in another thread. See http://anausa.org/forum/index.php?topic=2749.0 (http://anausa.org/forum/index.php?topic=2749.0). It's a good place to start reading.
Keep posting and asking the questions!
We are originally from the Boston area - moved to Cape Cod full time and now are "snowbirds" going back and forth enjoying the best of both worlds. We are researching Boston hospitals for both of us - hubby and I do things together!! He has a benign meningioma that has grown back and WILL NOT have another surgery and I am a "wait and watcher" with a 9th cranial nerve schwannoma. We have been to the Brigham and Beth Israel. The Brigham has world renowned Dr. Peter Black, neurosurgeon (in fact you should get his book, "Living with a Brain Tumor") and Dr. Naren Ramakrishna, radiation oncologist. They also have the Novalis system for radiosurgery. At the Beth Israel they have Cyberknife and the radiation oncologist we saw was Dr. Anand Mahadevan. They are both very impressive and we still do not know which way to go. Hubby is leaning towards Beth Israel's cyberknife (in fact Brigham is getting Cyberknife in the near future too) because of its accuracy and convenience. The idea of a treatment every day for four to five weeks coming from Cape Cod was daunting to us - Cyberknife is a one-shot deal for him but for others it could be three to five days. These types of tumors are usually not emergencies and you have plenty of time to check out all your options. Granted, it will probably drive you crazy but there are many people here who are willing, ready, and able to help you out with their own experiences. While we were in Florida over the winter, one neurosurgeon down there said, "go to Boston and talk to a few hospitals because when all is said and done, you don't want any if's, and's, or but's".
Good luck - keep us posted.
Thank you Katie and Sheryl for the great information. It gives me a lot of peace of mind given I am a marketing exec and research things to death as a profession.
I will let you know how things go as I start progressing through the decision making process. If anyone else has anything to add to the Boston AN scene please let me know.
I am a patient of Dr. McKenna's in Boston and he is tops in this field, really an excellent physicain. He will give you your options and then you make your decision. He's a great choice.
Thanks. It sounds like he is THE MAN.
Hi Jack and welcome :) Glad you found us for support during your AN journey... we are all here to help.
I'm also part of the Boston AN brigade and also available for assistance if need be.
As you can see below in my sig line, I had Cyberknife Radiosurgery at Beth Israel in April 2006. I have my upcoming follow up appts at end August and as of last appt, my tumor is dying a lovely death.
You will find much info in the "Radiosurgery" discussion forum here as well.... if radiosurgery is, indeed, the option you are looking at. There is also terrific insight into the local "Microsurgical" discussion forum.... KatieB and many here locally had their surgeries at MGH/MEEI and as I have "seen" many of them face to face (pls see "AN Community" forum for our local brunches... I'm sorry you missed yesterday's), those that had microsurgery in Boston are doing fabulous as well.
Pls hang in there... we know all of this info can be overwhelming at times, but we are all here to help/support as best as we can.
Again, welcome :)
I am now boning up on radiosurgery so I know more for the next appointment I have.
It seems in the Boston area I have 3 choices. It is Cyberknife at Beth Israel or GammaKnife at Tufts or in Providence.
How did you come to your choice of Cyberknife vs Gammaknife and do you know anything about Tufts vs Dr Noren at Providence.
Thanks for any info.
Glad to help.
Ok, here is the low-down on the Boston area radio options for AN's.....
MGH: FSR (I believe Novalis) and Proton Beam.
Tufts: Gammaknife (as you note)
Beth Israel: Cyberknife
Brigham/Womans: Novalis and has Cyberknife purchase requisition in process
Providence: RI (Dr. Noren) Gammaknife
I know many here that had "FSR" at MGH (jcinma is first to come to mind) and I do know of BostonJake (on this site) that had the Proton Beam.
Tufts, I do not personally know of anyone that had AN GK treatment there but maybe they can give you patient references for you to speak on the phone.
BI, well.... I'm kinda keen on them, but with good reason.
B/W: Great Novalis team there (I have met with the radio-team there and side note: my surgeon, Dr. Peter Black, is based there, working in conjunction with my BI team).
Providence (Dr. Noren), a forerunner of GK treatments in this area, also top of the line. ellenvig (on this site) had her treatment with him (I believe) last year.
As to my choice of CK, it boiled down to a few key factors (please note data is available for my own personal reasonings):
1. accuracy of CK and GK are approximately the same, although there is data noted that the CK accuracy may be a hint better (and a small hint at that) since GK requires metal head frame placement, which can cause a slight difference in accuracy. Both accuracies run approx 0.87-0.89mm, although I have heard of the CK treatment option running (at one point) of 0.5mm....just saw that this week and need to find out more about that stat, so not claiming it's 100% accurate as I need to learn more.
2. decision of metal head frame vs. mesh (plastic) mask.... ease of comfort. There is more comfort with the mesh mask... but yet, not what caused my ultimate decision.
3. GK is a one-shot treatment (1 dose) vs. CK being fractionated. There is some talk that while folks appreciate one-shot dose of GK, may be at that point used for AN's that have not much in the way of servicable hearing (most hearing is gone in AN ear). In my particular case, I have most of my hearing (over 85%) at the time of my treatment and for me, fractionating the treatment doses gave me terrific odds of keeping my hearing as well as ease of surrounding brain structures to recupe after each fractionated treatment since smaller doses of radiation are "fractioned" over a number of days. Now 1-1/2 yrs out, at last hearing appt, my hearing remains at 100% of what it was at the time of treatment.
Now, of course, you asked about my particular reasons for my choice... and individual results may vary. I know of many that had GK on their AN and doing great. I know of many that had CK on their AN's and also doing great. I know of some that had one or the other and not-so-great, so.... it truly depends on the individual... as does the ultimate choice of what treatment option to choose.
the decision should not be made lightly... it should be done with as much self-education of protocols as possible... as it's up to us to be our best own patient advocate. My reasons for my treatment may not be the same as others.. or completely off course for others and their treatment choice reasons. So, by noting your question directly to me, I answer as it applies to me....
My hope is that others here (hello radio-gang! all forms of radio!) will chime in and share why they chose as they did. Another suggestion is to read the "Radiation/Radio-surgery" discussion forum here. There have been quite a number of these discussions over the past months and maybe thoughts shared there will also help.
the decision making process is so highly personal, so I share with you knowledge and experience from my view/standpoint, but I have faith in you to do all of your fact gathering and make the best decision for you. Remember, never 2nd guess your decision once you make it and follow it through... you have made the best educated decision for you at the time... and that is all that matters.
Not sure if this helped, but noting what worked solely for me... Hang in there... lots to learn but we are all here to help and cheer you on during this process. We truly are in this together.
Thanks so much for the fantastic response.
I do have 100% of my hearing currently and did read as well that there is a better chance of retaining hearing with CK than GK. I also read that there was the potential for slightly less accuracy with CK than GK. I am trying to keep the convenience issue of one shot vs 3-5 shots out of the picture as well as the comfort factor in the mask vs frame.
If anyone knows anything about Tufts or Dr Noren I would appreciate any feedback.
glad to help. Please know that the Gammaknife has a "wee-bit" less accuracy than CK and not vice versa, depending on where the data stems from..... fractionating or not should remain a key item in whether or not you choose GK or CK as it should never be ruled out.
In peeking around, I found this link on the Cyberknife Patient Support Board. I post this here, not because its on the CK board, but... the responding doctor (Dr. Medbery) performs both, GK and CK, at the practice in Oklahoma, so he is very well versed as a practitioner of both protocols... this link is regarding AN treatments with both options and Dr. Medbery responded, from the driver's seat for both protocols... maybe worth a look.
an important note by Dr. Medbery, noted 2/3's way down thread:
" Posted 7/31/2007 2:42 AM (GMT -8)
THere is no reason to think CK will be less effective than GK, and the data to date shows the same 95-98% control rates. He is wrong about the accuracy. GammaKnife has a mechanical accuracy of 0.3 mm. But that does not take into account the inaccuracies of MRI versus CT, the inaccuracy induced by the head positioning system, and the inaccuracy induced by frame torsion. The problem gets even worse with mechanically set head positioning. THe OVERALL accuracy of the CK is variously reported as 0.5-0.89 mm, with most showing closer to the 0.5 mm for intracranial targets. OVERALL accuracy of the GK is 1-2 mm, depending on a number of factors.
Our radiosurgery group has experience with hundreds of AN's treated for 10 years on GK and for 4 years on CK. WE exclusively use the CK now.
Your choice, but I personally would go with CK. Either one is highly likely to control your tumor"
I am also in maine and just had surgery at MGH by Dr Barker and Mekenna. I still have a 1.4 cm tumor with a facial nerve wrapped around it and now must also research radiation. Dr barker has recomended FSR, 30 treatments. i have an appointemnt on 9/12 with Dr Loeffler, chief of radialology at MGH on 9/12. I am also seeing Dr Max Barth, a neurosurgeon in Portland and will research the quality of the team at maine Med. My primary care says they are good. Of course, if i have to drive to Boston i will but i will explore my portland options. I'll keep you posted.