Author Topic: Diagnosed today, considering radiation  (Read 4025 times)

Frank2808

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Diagnosed today, considering radiation
« on: July 11, 2011, 02:24:00 pm »
Hi all,

Thanks for the great forum.  It's been helpful to read.  So I went into the docs last month with a sudden ringing in my right ear.  As a precaution they did an MRI and I found out today that I have a 9mm tumor in my right ear :/  Only symptom at this point is about 50% hearing loss in my right ear and pretty loud tinnitus. 

My doc (Dr. Semaan) said I have 3 options.  Watch and wait, radiation, or surgery.  If I understood him correctly, surgery is the only option that may permanently preserve hearing I have left in my right ear?  Or could a successful GK or CK procedure also preserve hearing? 

Jim Scott

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Re: Diagnosed today, considering radiation
« Reply #1 on: July 11, 2011, 03:05:36 pm »
Hi, Frank - and welcome. I'm pleased to learn that the ANA website discussion forums have been helpful to you.

Preserving hearing is always a crucial concern in newly-diagnosed AN patients.  Radiation usually does not have an immediate negative effect on hearing ability but it can, in time.  Surgery, especially the Middle Fossa approach, can preserve hearing but the chances are not great.   'Translab' (Translabyrinthine) AN removal surgery, that goes through the ear canal, does guarantee total hearing loss in the affected ear, so your doctor's statement that surgery may permanently preserve your unilateral hearing is correct but the qualifier 'may' is important to note.  I'm not a doctor but because your AN is relatively small you may choose to 'watch-and-wait' at least another six months to a year to see if the tumor grows (it may not).  If it does - or your symptoms increase, signaling growth, you can decide on how to address the AN at that time.  Meanwhile, I would suggest consulting more than one doctor, preferably one who performs both radiation and surgery on AN patients, to get a broader medical consensus on your best option.  However, the final treatment decision remains yours, alone.  Being fully informed is your best 'weapon'.  We'll try to help so please keep us updated on your situation and your decisions.  Thanks.   

Jim 
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

kmoltenbrey

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Re: Diagnosed today, considering radiation
« Reply #2 on: July 11, 2011, 04:36:06 pm »
Hello Frank,

Welcome to our family.  Take your time to do research and make sure your doctor has plenty of experience with ANs.  That is very important! 

I have found the forum very helpful and I am thankful for the people here. 

Peace,
Kathy
Diagnosed Spring 2011 with a Left ear AN
Functional hearing in left ear is gone, constant Tinnitus, change in sensation in mouth/taste, balance issues
Being treated at MEEI  Dr. McKenna

"Be the change you want to see in the world." ~Ghandi

skipg

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Re: Diagnosed today, considering radiation
« Reply #3 on: July 11, 2011, 08:32:41 pm »
Hi Frank,

I am WW and just had my yearly physical today. My PCP is interested in my AN and also had some info for me from uptodate.com. I am constantly reading and researching. If the time comes for action I am looking at CK. In fact I am going to see a radiation oncologist this week. For me I believe this is the best route. I am also exploring proton therapy, but nothing in our area. They do have a proton machine, but for some reason it is only being used on select cancer patients.

Ask your doctor to pull up Vestibular schwannoma on the site www.uptodate.com. This is a subscription site that doctors subscribe to. He should be able to print out the latest report on AN's updated Jan 2011. This report compares all surgery types and radiation types and the affects each have had. This report  does say "The middle fossa approach is suitable for small (<1.5cm) tumors when hearing preservation is a goal". The radiation portion of the report has some very high percentages for hearing preservation when using GK and CK.

Do your homework, ask questions, get 2nd or 3rd opinions. Never accept what you are being told until your research confirms what you heard. I constantly go to the internet to validate what my doctors tell me. I believe in being empowered with knowledge that will guide me in my AN treatment. Just remember we are all different and our AN's are also different, as are the symptoms we feel.

Good luck in your journey and keep us updated.

Skip
Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

ppearl214

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Re: Diagnosed today, considering radiation
« Reply #4 on: July 12, 2011, 04:30:10 am »
Hi Frank and welcome. 

I will respond direct to radiation and hearing preservation.

Reports recently published (one in particular out of Beth Israel Deaconess in Boston -- can be found online -- re: hearing preservation and skull base/AN's and CK) are noting 100% hearing preservation of serviceable hearing (hearing levels at time of treatment) for their facility.  I am one of those that were part of that study and do confirm that they did save my hearing.  BTW, my tumor was same size as your's at time of treatment.

Muliple reports (that you can find online) are noting that "fractionation" of radiation doses is what seems to be helping with hearing preservation.  By receiving lower doses per day vs. 1-higher dose at one time helps with surrounding normal brain structures take a lower "hit" of radiation.

What I also note many times around here is this.... "individual results may vary...."  As with any medical treatment for any medical ailment, some may react positively and some may react not as well.  On these forums, you will see many (surgical and radiation) that have had positive and not-so-positive outcomes so continue your homework as you have been doing.   

Medical technology has come a LONG way in the past number of years and I am truly blessed to have the outcome that I have.  Sending wishes to you for the same.

Again, welcome. Glad you found us!

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Tumbleweed

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Re: Diagnosed today, considering radiation
« Reply #5 on: July 12, 2011, 01:01:37 pm »
Hi, Frank:

Unless there are very special circumstances in your case that indicate otherwise, radiation most certainly has at least as good potential for preserving your hearing as microsurgery, and possibly better. CK and GK are both generally excellent options for AN patients with a small tumor such as yours.

Ask your doctor to perform an ABR (auditory brainstem response) test. An ABR test gauges the functional integrity of your hearing nerve at five points by measuring the amplitude of signals sent along it. (It's a fast and painless procedure.) Dr. Derald E. Brackmann (famed neurosurgeon at House Ear Institute) relies in part on the ABR test to predict the likelihood that microsurgery will cause total loss of hearing on the AN side. The idea is that if  your hearing nerve's function is hanging on by a thread (low amplitude measurements at most or all of the five measured points), your hearing is not likely to survive the trauma of microsurgery.

The reason why fractionated radiotherapy (such as CyberKnife, or CK) is thought to offer a slightly better chance of preserving hearing than non-fractionated radiosurgery (such as GammaKnife, or GK) is that the tumor is more sensitive to the radiation than the healthy nerve tissue in the hearing nerve. The lower dose, applied three or more times, gives the hearing nerve a chance to rebound, whereas the tumor rebounds slower and therefore doesn't have a chance to recover before the next dose of radiation zaps it again.

It's important to realize that "hearing preservation" is not inferred to be total preservation of hearing, by AN specialists. It merely means the "preservation of some serviceable hearing." You could lose 80% of your hearing and still be regarded as having had your hearing preserved on the AN side! Also, when doctors talk about their success rate with preventing hearing loss in their patients, they usually mean that those patients who didn't lose any hearing remained in the same hearing Class. A hearing Class is a range of hearing within which your average hearing ability across all frequencies falls. So, if your average hearing ability worsens, say, 15%, it may nevertheless still fall within the same range of hearing or Class. In such a case, your doctor may regard your case as one in which hearing function did not degrade after treatment. Keep these points in mind when talking with your doctors, as they will not likely elaborate and you might otherwise see a rosier picture than what they mean to give in their prognosis.

For your size tumor, generally speaking, all three options (W&W, microsurgery and radiation) are tenable. Medium-size tumors (i.e., ones larger than yours) in concert with poor ABR test results often present more difficulty in preserving hearing with microsurgery; in that case, the non-invasive radiosurgery (one dose) and radiotherapy (multiple, fractionated doses) options generally improve your chances of preserving your hearing. Tumors over 3 cm in size along the oblique transverse axis (more or less horizontal axis) of measurement normally require microsurgery; radiation is usually ruled out for such large tumors.

But you're in the "small AN" category. All three options are open to you. Take your time, do your research, let it digest and then see what feels right to you. Inform yourself and then trust your gut, and you'll come out fine.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

chrisransom

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Re: Diagnosed today, considering radiation
« Reply #6 on: July 12, 2011, 03:31:59 pm »
Frank - welcome and I'm glad you found us.  As someone , too, who was recently disgnosed I've found the inormation and people in here to be invaluable in my own search.  I say to everyone I reply to - "learn learn learn" before you make any decisions.  My path is to watch-and-wait as my symptoms are mild (tho my AN is medium in size).

All the docs I consulted with said pretty bluntly that if I have surgery I WILL lose hearing in the effected ear.  "No useful hearing" is what they said.  They said with gamma that there's a better chance of preserving some hearing but that it too would probably diminish over time.  But that's for my circumstance not yours.  And maybe they were giving me worst case so as not to build up a false hope. 

Good luck to you!

Chris
Diagnosed with 21x16x16 mm AN in December 2010.  No change in June 2011 nor in January 2012.  No major symptoms - tinnitus, some fullness in left ear but no hearing loss or other symptoms.
Firmly in the W&W camp for now.

JAndrews

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Re: Diagnosed today, considering radiation
« Reply #7 on: July 12, 2011, 05:04:27 pm »
9mm is pretty small. I would watch and wait. The tinnitus will most likely never change. It is hard to save the hearing once the AN is there
2.5cm x2.0cm cerebellapontine angle meningioma. 100% removal 2/2009. House Ear Institute. Dr Brackmann and Dr. Schwartz. SSD right ear. No balance problems except when really tired, no headaches. Transear hearing aide made no difference, tried it for 4 months.