Author Topic: Newly diagnosed  (Read 4056 times)

LinhowFla

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Newly diagnosed
« on: June 07, 2015, 09:55:03 pm »
Just diagnosed 6/3/15 with 1.2 cm.  60 years old.  Have over 50% hearing loss & ringing is getting worse.  Have slight issues with balance.  Thought radiation treatment would be an easy choice, but from reading forums it seems like it could take 2 to 3 years before there is evidence of shrinkage and the tumor is never totally removed.  Am in the process of making appointments, hopefully with Shands in Gainesville.  Seems like the more I read, the more confused I become.

ANGuy

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Re: Newly diagnosed
« Reply #1 on: June 08, 2015, 03:03:43 pm »
I'm sorry to read of your diagnoses.  I am one year since diagnoses, so I remember how much fun it was finding out I had an AN.  With your size AN, you have plenty of time to, years really if you want, to decide on what to do about it.  You will use some of that time, even if it is weeks, even if you want something done "now".  So, settle in and take your time figuring out how to proceed.

At your age, I think radiation is a very viable choice.  My opinion, shared by some and not by others, is that the older you are, the better of a choice RADIATION is.

As for the capabilities of it, it is pretty rare to actually shrink the tumor with radiation.  Don't confuse variations in MRI results of post radiation MRI's as "shrinkage".  It's not that it never happens, and it's not that it can't happen, but meaningful reduction of tumor size is generally not considered a goal of radiation treatment.  As for symptoms, it is possible that radiation or conventional surgery will improve symptoms.  This can and does happen, but I put the likelihood at low.  People get used to symptoms, live with the ones that don't get better, and balance improves over time.  Some then attribute this "success" to an improvement of symptoms due to treatment.  With any treatment approach, there is the chance that symptoms will get better, worse, or stay the same.

Anywhoo, learn about all the different options, don't take my, or anyones' word alone for the pro's and con's of different approaches.  Find Drs. that specialize in AN's and other skull base tumors and get their opinions.

There are thousands of AN patients, pre- and post- treatment in the USA.  There are only a few dozen active posters on this board.  The results of the people on this board are statistically small.  Benefit from the anecdotal info on here, don't get too caught up in the results of fellow board members.

Edited to correct the capitalized word in paragraph 2.
« Last Edit: June 08, 2015, 03:05:18 pm by ANGuy »
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

arizonajack

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Re: Newly diagnosed
« Reply #2 on: June 08, 2015, 06:22:41 pm »
Just diagnosed 6/3/15 with 1.2 cm.  60 years old.  Have over 50% hearing loss & ringing is getting worse.  Have slight issues with balance.  Thought radiation treatment would be an easy choice, but from reading forums it seems like it could take 2 to 3 years before there is evidence of shrinkage and the tumor is never totally removed.  Am in the process of making appointments, hopefully with Shands in Gainesville.  Seems like the more I read, the more confused I become.

My experience is almost parallel to yours. You can read my journey at the link below. I am 2 years 5 months post Gamma Knife. My last MRI was a few months ago with no discernible shrinkage but no growth either. Other than being deaf in the AN ear I am relatively symptom free. Tinnitus on such a low level that it's easy to ignore, almost 100% free of balance issues. At age 68 ALF is the least of my medical worries.  ;D
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

Steve2014

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Re: Newly diagnosed
« Reply #3 on: June 08, 2015, 08:46:00 pm »
Hi, I can completely relate to how you are feeling. I was diagnosed exactly 1 year ago and have been in the watch and wait arena. For me that really meant the research phase. Waiting makes no sense to me, as my tumor has grown 2 or 3 mm in 12 months. My hearing is very good, main symptom tinnitus. I decided on surgery and set a date for Jun, then I reconsidered radiation and cancelled surgery and am know setting an appointmate for surgery in July. I'm 57 and have a 1.6 cm right side. All I can tell you is that the consensus from the 4 surgeons ive seen is that my best chance of saving hearing is with surgery plus I really like the idea of having the thing GONE. The radiologist I saw was also pretty convincing but everyone else said there was a high chance of losing hearing 5 years down the road with radiation. I have finally decided to go to LA and USC Dr Friedman. I think the Most important thing to keep in mind is to get a few opinions and go with someone who has done LOTS OF AN'S. There is definitely no one right answer, good luck in your journey, the 2nd half of mine begins shortly.
Diagnosed May 2014 at age 56, 1.5cm right side, definite growth shown at 6 month and 1 year MRI May 2015. Surgery on Aug 4, 2015 at USC with Dr's Friedman and Giannatta, retained hearing!

ms34292

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Re: Newly diagnosed
« Reply #4 on: August 08, 2015, 04:09:14 pm »
Steve good luck to you. I am  61 and have tumor similar size to yours which is also growing on right side. The more you read the more confusing and depressing it gets. I am leaning towards surgery as the radiation in my mind is also very dangerous in that the effects are not know quickly and I have had doctors tell me that you could wake up one day and lose your hearing with no warning. I also want to preserve hearing and currently have 90% of mine in the effected ear. Finally, the thought of radiation and it's side effects and possible collateral damage is scary.  My biggest worry is time frame when I can resume physical activities which I enjoy gym, softball, etc. guess I have to deal with that. Will keep fingers crossed for you!