Author Topic: Radiation/Radiosurgery?  (Read 5613 times)

TJBBB

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Radiation/Radiosurgery?
« on: October 13, 2015, 10:49:20 am »
I am newly diagnosed and this is my first post.  I've spent dozens of hours reading posts here as well as other articles and websites.  I'm leaning strongly towards radiosurgery, although I am in excellent health and should be a viable candidate for microsurgery.  I have tinnitus, very little hearing and I believe some balance loss on my left side.  This condition has existed for about 10 years.  I'm not too concerned about losing hearing/balance, but would really like to preserve my facial nerve.

I'm with Kaiser and have my first consult with Dr. Cueva (head and neck surgeon) in San Diego on the 20th (next week).  I am sending my info to Dr. Chang at Stanford, and the House institute for their opinions.  Does anyone know if Kaiser has radiosurgeons experienced with AN or if they even perform them.  I know they have sizable staff of radiation oncologists at the Sunset facility. 

Any suggestions/recommendations would be much appreciated.
Diagnosed 9/24/15.  2.0 cm x 1.0 x 1.2 AN left ear. 67 years old.  > 90%  Hearing loss, tinnitus, minor balance issues.

CassaP

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Re: Radiation/Radiosurgery?
« Reply #1 on: October 24, 2015, 02:23:30 pm »
Hello, TJBBB ...

I've just completed a course of 25 fractionated radiotherapy treatments at Kaiser Interstate in Portland for my 2.5 cm AN. (I also spent time at Kaiser Sunset last spring, receiving a VP shunt for normal pressure hydrocephalus; no complaints about care.) I opted for radiation over surgery mainly to avoid having two brain surgeries in one year. Side effects have been minimal and tolerable. It was nice sleeping in my own bed at night and having a life during the treatment regime. Being snapped into a tight-fitting mask not the most comfortable thing, but a piece of cake compared to surgery. I've been a bit woozy for months and realize it might be a forever thing. The Radiation Oncology facility and staff at Interstate were first rate and actually quite welcoming. Can't imagine it would be otherwise at Sunset. Of course, you don't really know how effective the treatment has been for up to two years. And apparently this approach can lead to brain health issues over time, though you'd hope it's not always the case.

It's such a hard decision. I might have chosen surgical removal had I not required the shunt. I'm a couple years younger than you, btw.

Would be interesting to know what you opt to do.

Wishing you all the best,

Cassandra

john1455

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Re: Radiation/Radiosurgery?
« Reply #2 on: October 24, 2015, 09:13:25 pm »
At 67, you are leaning the right way, imho. I was 65 when diagnosed and was 66 when I had CK at Stanford. I emailed you some info about Kaiser.
Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs

arizonajack

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Re: Radiation/Radiosurgery?
« Reply #3 on: October 25, 2015, 05:14:04 pm »
Me: Similar age, similar symptoms, similar sized tumor. SRS Jan 2013. Balance issues resolved within a few months. Still deaf on the AN side, very mild tinnitus and dry eyes at night. Otherwise, the dead tumor appears stable. Last MRI was a little too soon to expect much shrinkage.

I agree, you're on the right track by considering SRS.

You might consider a consult with Dr Randall Porter of the Barrow Neurological Institute in Phoenix. He does microsurgery and SRS so his counsel is unbiased. He conducted my SRS at through Barrow.

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Doc

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Re: Radiation/Radiosurgery?
« Reply #4 on: October 25, 2015, 06:17:42 pm »
...since you asked, I personally would go with the least invasive method first, so long as there is a high probability of a successful outcome.

Take Care and Good Luck to you ;)

Doc
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

KeepSmiling

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Re: Radiation/Radiosurgery?
« Reply #5 on: October 27, 2015, 07:32:43 am »
If your tumor is larger than 2 cm you may not be a good candidate for Proton Therapy. The only way to find out is to send your actual MRI results and ask for consideration. Send the written report and a copy of the MRI. At the Massachusetts General Hospital Proton Therapy Center there is a doctor who will accept your MRI results and study your case, with  a team of doctors. If you are interested in this possibility, then send your MRI results to :
MGH
100 Blossom Street
Cox- 3
Boston, Mass 02114
Attn: Dr. Jay Loeffler
Care of:  Ms. Jen Fitzgerald 617-724-1548

We had also sent my husband's MRI to other proton Centers around the USA, so please don't think that we are in any way connected to MGH. We previously had absolutely no connections to MGH until we were lucky enough to find the Proton treatment there.
We are encouraged by superior results for my husband, so far. He completed proton therapy in August 213.  Read about my husband by simply searching under the profile forum name of KeepSmiling. He is faring well. He is still deaf in his ear. He still gets occasional tinnitus. He is feeling fine. Now it is 2015 and he is well. Two weeks ago he finished a grueling bicycle ride in the difficult weather of Florida. He rode his bicycle with his crazy competitive  pals in the 2015 Multiple Sclerosis Charity Fundraiser (160 Mile total  - Ponte Vedra Florida to Daytona Florida and then back to Ponte Vedra Florida the next day) . They finished in the top 10% of 1,800 bicycle riders. My husband needed a neck massage afterwards and then was tired for a couple days but otherwise fine. Excuse the crude language-but that is really badass!

Here are some studies to ponder: (READ it all at the websites given )

http://journals.lww.com/neurosurgery/Abstract/2003/09000/Proton_Beam_Radiosurgery_for_Vestibular.6.aspx

"...CONCLUSION: Proton beam stereotactic radiosurgery has been shown to be an effective means of tumor control. A high radiological response rate was observed. Excellent facial and trigeminal nerve function preservation rates were achieved. A reduced prescribed dose is associated with a significant decrease in facial neuropathy."

http://www.tastro.org.tw/DB/Edu/580-5.pdf
"...Particle beams, such as proton and heavier ion beams, show an increase in energy deposition with penetration depth up to a sharp maximum at the end of their range to form the so-called Bragg peak. Almost no dose is deposited in the normal tissue beyond the Bragg peak. The particle range is deter- mined by the energy of the incoming particles (Fig 1). Favorable dose distributions with a steep dose fall-off at the field borders and, thus, more precise dose localization can be achieved with these beams compared with photon beams. As a consequence, it seems likely that dose escalation can be per- formed without aggravating toxicity in surround- ing normal tissues....Most of the proton therapy facilities have focused their clin- ical programs on pediatric tumors, skull base tumors, and head and neck tumors. In addition, some of the proton facilities in the United States have an extensive expertise in treating patients with localized prostate cancer and inoperable early-stage lung cancer. Given the availability of beam time, tumor entities such as paraspinal tumors and other tumors in difficult-to-treat regions are sometimes accepted....The reduction in integral dose to normal tissue achieved with proton RT is assumed to be most beneficial for the treatment of pediatric tumors because the risk for secondary malignancies is ex- pected to be reduced compared with photon RT....However, randomized clinical phase III trials compar- ing proton RT versus precision photon RT are not considered reason- able because it is unlikely that photon RT will achieve better outcomes or a reduction in toxicity. Marginal misses are not expected to occur more often after proton RT as long as the clinical target volume concepts are not altered, safety margins included in the planning target volume are appropriate with respect to target movement, and patient alignment is checked and optimized before each irradiation....Most of the available data was retrospectively analyzed, and local control rates achieved with proton RT were comparable to rates achieved with modern photon RT modalities such as fractionated stereotactic RT. The observation times in almost all case series are too short to rule out late toxicity. Although the advantage of minimizing low-dose exposure to normal tissue seems likely to be important for the pediatric population, the issue of finding a mea- surable benefit in adult patients remains controversial.

It is always good to look at quantitative information aboutProton Therapy. Best of luck to you, whatever you consider !
Stay optimistic and keep smiling.  Attitude helps.
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

TJBBB

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Re: Radiation/Radiosurgery?
« Reply #6 on: November 03, 2015, 07:14:20 pm »
Thanks to all for your responses (and John for valuable info in the private email).  I didn't get any for the first few days, and stopped looking for a while. Since my last post I had a consult (last week) with the Kaiser radiation oncologist.  The first doctor in the room was quite young (I was concerned she was still in her residency and probably had little experience).  She did a good job explaining the whole process.  However, when said I wouldn't mind losing what little hearing I had left, but I'd really like to preserve my facial nerve.  She looked perplexed and said "facial nerve?"  There were some questions she also couldn't answer and called in their (senior) radiation oncologist who was much more knowledgeable.  He was, of course, aware of the potential facial nerve damage and even quoted an 8% chance of damage.  That's higher than I hoped, but maybe that is the going rate. 

Now they've only treated about 150 AN's over the last 10 years, but 1000's of meningiomas, which they claim have a very similar treatment.  What really surprised my was that he proposed a single treatment.  They use the Novalis tx, which is a linac based xray machine.  From what I've read, the CK machine has more sophisticated real time imaging and adjustment, while the Novalis machine has more sophisticated beam shaping.  I don't recall reading about any single treatment plans other than with the GK.  Anyway, I have my consult with Dr. Chang at Stanford next week to see what he will propose what he thinks of my Kaiser consult.  All the references to him on this site seem to be about CK treatments, so I was surprised when I learned he is a neurosurgeon and and not the radiation oncologist (who will also be at the consult). 
Diagnosed 9/24/15.  2.0 cm x 1.0 x 1.2 AN left ear. 67 years old.  > 90%  Hearing loss, tinnitus, minor balance issues.

john1455

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Re: Radiation/Radiosurgery?
« Reply #7 on: November 04, 2015, 01:25:02 am »
Dr Chang is a neurosurgeon who does both microsurgery and CK. FYI, neurosurgeons do not work alone when performing stereotactic radiosurgery. The services of a radiation oncologist is also necessary; it's a team approach. As I told you in my email, experience is going to the the major factor that determines how successful your outcome will be. Here are some links that may help you decide where to seek treatment:

https://stanfordhealthcare.org/medical-clinics/cyberknife-stereotactic-radiosurgery-program.html
https://stanfordhealthcare.org/doctors/c/steven-chang.html#summary-content

If you decide to go to Stanford to have Dr Chang treat you, you will also have a radiation oncologist as part of your team. Mine was Dr Gibbs. Dr Chang and Dr Gibbs are co-directors of the Stanford CyberKnife program.

John
« Last Edit: November 04, 2015, 01:29:15 am by john1455 »
Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs

PaulW

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Re: Radiation/Radiosurgery?
« Reply #8 on: November 04, 2015, 06:56:10 am »
The Novalis TX can do Beam shaping, The New Cyberknife M6 also does beam shaping and they do have one at Stanford.
Beam Shaping makes sense for larger odd shaped tumours. Smaller tumours its actually a disadvantage.
Novalis can only treat in an arc, while Cyberknife can treat from more angles.

Here is an interesting paper

My take on this.... Gamma Knife gives you the least amount of radiation where you don't need it, followed by Cyberknife, and then Novalis TX.

http://www.ncbi.nlm.nih.gov/pubmed/22884842

My personal opinion is that each machine is the best, it just depends on the size, shape, type and location of the tumor and personal goals.

As for fractionation it exposes you to more radiation. There is a theory that fractionation may save hearing however I believe the latest long term results for Cyberknife are the same whether you fractionate or do single session Cyberknife... Might want to speak to Dr Chang about that one.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

operarose

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Re: Radiation/Radiosurgery?
« Reply #9 on: November 19, 2015, 03:31:02 pm »
Hi

I am newly diagnosed and am very grateful for this site.  My question is about Stanford/Dr. Chang. When I phoned there to find out how to get a second opinion from him (whether my situation even is a good fit for CK), the office said he does not do phone consultations and that I would have to go to Stanford.  Is this your experience as well?  I got the impression from folks on this forum that he would do a phone consult.  Thank you so much

GaryWNT

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Re: Radiation/Radiosurgery?
« Reply #10 on: November 19, 2015, 08:09:04 pm »
Hi, Operarose,
I just completed CyberKnife with Dr. Chang and Dr. Hancock at Stanford. I sent an email to Dr. Chang to get the process going and then sent him my MRI images. We communicated via email, not telephone. I live in Vietnam, so the distance made email more efficient. Dr. Chang was very responsive and replied in a very short amount of time. I would recommend that you contact Dr. Chang via email.

I am one week out from my final treatment and have made the journey back to Asia on my own. I experienced no side effects or changes in symptoms during or so far after treatments.

Good luck in your search for the right treatment for you!
Gary
Sudden hearing loss in left ear 02/15
MRI 07/15 showed 2.5cm AN
CK at Stanford (3 days) 11/16
No change in symptoms (Mild tinnitus, mild balance issues, moderate hearing loss)
1st follow up MRI coming 04/16
some evidence of central necrosis on the treated left acoustic neuroma 05/10/2016

operarose

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Re: Radiation/Radiosurgery?
« Reply #11 on: November 19, 2015, 11:15:26 pm »
Thank you so much, Gary. I will email him. It is wonderful that you have completed your treatment. I wish you all the best!

 


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