30 Day Treatment Options

[bostAN]

Greetings Fellow AN'ers ...

I'm still a "newbie" .... but have read nearly every post on this board and am very thankful for all this wonderful information.  I was diagnosed with a 2cm AN on October 19.  I also have the honor of having a larger than usual vein (Venous Angioma) running behind and over the top of the AN.  Great!!  I'm in Boston and have explored all radiation options - GK, CK, and the 30 day fractioned SRT at Mass General and Brigham & Women's.  Due to the vein .... the docs have indicated that any course would probably be OK ... but best to play it safe and go with the most conservative option.  I'm scheduled to begin with Dr. Loefler at MGH with "3D Conformal therapy given sterotactically" via Varian Clinac 600 on December 26.  I'll have 30 treatments over 6 1/2 weeks ... no weekends ... no holidays.

My other option is Brigham & Women's - Intensity Modulated Radiation Therapy (IMRT) via Novalis.  To this point, I've selected MGH/Loeffler because both quote the same control rates, hearing preservation, etc. .... but I personally preferred Loeffler and his experience over the Dr. at the Brigham.

Having said that .... I'm still not resting easy with my decision.  I've read recently that IMRT is the "latest and most advanced" technology for the fractioned therapy treatments  .... it allows normal tissue/organs to be avoided ... etc.  Logically - I feel Massachusetts General Hospital's technology must also be up to par .. or better ..  but I'm wondering if I should pull a 180 and go with the Novalis/IMRT ... even though I haven't bonded with the doctor the way I did with Loeffler.

Whew.  Can anyone provide guidance/thoughts on IMRT vs. 3D Conformal via what I guess is standard LINAC.

Thank you all!
John P

[Mark]

John P,

Last week there was a discussion specific to Novalis pros and cons, so I'm assuming you've seen that as well as the archived posts regarding the the comparisons between radiation systems.

LINAC ( or linear accelerator) simply refers to the source of the radiation. All of the common machines in use today utilize LINAC except for GK which uses Cobalt. neither makes a difference on the biological impact on the tumor, but the cobalt is more difficult for the hospital to dispose of ( which is their problem  )

Shaped Beam and IMRT are essentially the same type of system so I don't think you you are really making decision of material difference between Varian and Novalis. Kind of like choosing between a chevy and a buick or Ford and a mercury car. The reason you are getting 30 days of treatment is that the low doses compensate for the reduced accuracy of these systems compared to GK / CK which was also discussed in last weeks exchange re: Novalis.

You don't indicate why you eliminated the CK / Gk option but I assume it has something to do with the larger than normal vein issue. If so, I guess I'm perplexed why the doctors would recommend utilizing a machine of less accuracy with a critical structure in such close proximity. I'm certainly not qualified to address that, but it might be worth your while to pose that particular issues to the Docs on the CPSG board and see if they think it precludes or suggests GK / CK as an option in your treatment.

In the end, it is about what medical team you are most comfortable with and if you have confidence with Loeffler and MGH then that should be very important in your decision.

Mark

[bostAN]

Thank you Mark!  Your words are very helpful and encouraging. 

On why 30 days instead of GK over CK:
There are very few (less than 10) cases on record of an AN with this type of vein near/attached. Of those, there is one case of a very bad outcome following GK (there is a post on this from one of the docs on the CK Support board - topic: Venous Angioma).  The theory if that the higher single dose of radiation damaged the vein.  Personal choice, but I want to be as conservative as possible, thus the 30 days.

On needing 30 days because they need to make up for the accuracy:
Based on what I've read on this and the CK web sites, it sounds like CK/GK are extremely accurate.  But all the doctors with whom I've spoken have said that the primary reason for the 30 days and lower dose is to spare healthy tissue and increase chances to save hearing ... which mine is still 100%.  I haven't heard/read any medical information that the 30 days is used to make up for accuracy.  Both hospitals who offer the 30 day also offer 1 day with the same machine/technology.

Over the last 6 weeks, I've done entirely too much research on possible treatments, poured through all the medical journals and read the study results.  My wife is ready to kill me.  I honestly feel that GK - CK - 30 day SRT are all excellent options for treating ANs.  In some ways, I wish I lived on an island and only had one choice .... my life would have been easier.  In the end, it was a personal choice of which doctor/team I felt most comfortable.

Thank you again .... and I'd still welcome anyone else's feedback on IMRT via Novalis vs 3D Conformal via LINAC .... both 30 day treatments.

- John P

[Dealy]

Jphn P. I hope I do not compromise your decision. It will be 2 years in February of 2007 that my AN was discovered and I too had 100% hearing. I agonized and searched for 3 months on what procedure to use and the best outcome. I even called people who had successful radiation being 5 too 6 years out. Finally I decided on FSR at Johns Hopkins. I waited ayear after my first visit. You guessed it-it grew. MY hearing was still 96% at the time this last summer. Went to Johns Hopkins in JUne of 2006. Doctors their told me that because of the size of my AN -2.7CM from the orginal 2.4CM that the best option was 25 sessions  using the LInac. This is similisr but does not compare with the Novalus procedure I would guess. Anyway- I knew about the accuracy issue compared to CK or GK. IT can be 1 too 2mm off. However I was told that due to less dosage-even if healthy tissue is radiated it can withstand and heal except the hearing nerve. Well if you have read some of my posts here is the results on 5 months out. Had MRI in 3 months-indication of necrosis but not sure. Coming up on 6 month MRI at end of December. Hearing is really abated alot. If I still have 96% left I would be surprized. So I know how you feel-Once you make that decision you have too live with the results. Hope I helped you some. Keep up with this board. My 6 month MRI is December 26th-I will post results ASAP. Hope all goes well and you make the right decision you can live with. Ron

[bostAN]

Thank you Ron ..... I don't think you've compromised my decision at all.  Good luck with your 6 month MRI.  Interesting side note .... my Doctor at Mass General no longer does a 6 month MRI, instead waiting for 1 year.  His reason?  Too many of these swell at the 6 month point and the patient panics when he (the Doctor) knows it's completely normal.  He feels the 1 year is a better measure as most of the swelling is gone by then.

Good luck!

[krbonner]

John,

I can't comment on the options for radiosurgery.  For various reasons, I chose translab surgery at MGH.  I did have one meeting with Loeffler, and my husband and I were definitely impressed with him.

But, the point I wanted to make is this - I have a neighbor and friend who is one of the radiation physicists that works with Dr. Loeffler.  He was wonderful about sending me information, articles, and talking to me when I was deciding between radiation and surgery, with some articles specific to the type of radiation used at MGH.  If you want to send me a private message with your email address, I can forward to you what he sent me.

I have nothing but good things to say about everyone I met working at MGH.  But my father (who's fighting leukemia) says the same about B&W, where he's being treated.  LOL!

Good luck!
Katie

[ppearl214]

Hi John,

glad to see you are hanging in there and that your wife hasn't killed you yet! I'm so sorry you both missed the brunch but there will be others.

You know about my feelings regarding the different radio-surgery options and those offered here in New England, so know that regardless of what you decide, I'm in total support and cheering you on. Hang in there!

Phyl