Author Topic: Close to make decision  (Read 8036 times)

CS

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Close to make decision
« on: July 24, 2014, 12:26:46 pm »
Hi Everyone,

I was diagnosed with 12mm x 0.7mm x 0.6mm AN beginning of June, 2014.
I've seen several doctors and am close to decide a treatment option.

I'd love to hear from folks who had Retrosigmoid or Translab surgery or GammaKnife, BrainLab, Linear Accelerator Radiation treatments. Thanks!
Diagnosed: 06/04/14
12mm x 6mm x 7mm AN
Seeking best treatment option! :)
09/24/14 Retro-Sigmoid Removal

sandyinwisconsin

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Re: Close to make decision
« Reply #1 on: July 24, 2014, 06:47:27 pm »
I had 26 treatments of radiation on a LINAC machine.  I'm doing fine.
I never lost any extra hearing. No hair loss. No loss of balance or dizziness. 
I wasn't tired or sick.  If you have the time and patience, this may be something
to check on.  It helps cut down on all those post treatment symptoms. 

I'm 7 months out.  Next week I have my follow up visit.

Sandy
Treated at UW Madison, Wisconsin in December of 2013
1 cm AN deep in the boney canal.  Treated with 26 treatments of radiation in December, 2013.  Please pray with me that this worked.

ASG

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Re: Close to make decision
« Reply #2 on: July 24, 2014, 10:18:58 pm »
I had GK at UPMC w/ Dr. Lunsford and had a great experience. I have a post on here somewhere where I wrote about my experience.  Feel free to PM me if you have any questions about what I went through!

Adam
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

CS

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Re: Close to make decision
« Reply #3 on: July 28, 2014, 11:35:35 am »
Hi Sandy,

Thanks for sharing your LINAC experience!  How big is your AN?
Diagnosed: 06/04/14
12mm x 6mm x 7mm AN
Seeking best treatment option! :)
09/24/14 Retro-Sigmoid Removal

CS

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Re: Close to make decision
« Reply #4 on: July 28, 2014, 11:37:02 am »
Hi Adam,

Thanks for your reply!  Glad to hear you had a great experience. I'll check your post on the experience.
Diagnosed: 06/04/14
12mm x 6mm x 7mm AN
Seeking best treatment option! :)
09/24/14 Retro-Sigmoid Removal

sandyinwisconsin

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Re: Close to make decision
« Reply #5 on: July 28, 2014, 06:36:03 pm »
Mine was 1 cm deep in the boney canal.

Sandy
1 cm AN deep in the boney canal.  Treated with 26 treatments of radiation in December, 2013.  Please pray with me that this worked.

ANGuy

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Re: Close to make decision
« Reply #6 on: August 10, 2014, 09:19:42 am »
I was recently diagnosed with a similar sized tumor, I'm 47yo.  The ENT's I saw initially were eager to do surgery.  I went to Duke and saw a neurosurgeon who works exclusively with skull based tumors, their removal, treatment, and research thereof.  His position was that one such as mine SHOULD NOT BE REMOVED until there is a specific reason to do so. 

I would ask yourself WHY you want to remove it, what do you hope to achive by removing it NOW, rather than say 6 months from now.  What is so presssing about getting it done now, when you have no information showing that it is, or will, grow?  In 6 months, you can get another MRI and see if it has grown.  Likely, it will not have shown any growth in that time since these things grow slowly even when they do grow.  Then you wait another 6 months and check it again.  If,, after a few years, you have information showing that it has grown, then you might have reason to take action.  It might take 10 years to show growth, or it might not grow at all.  Who knows what improvements in the treatments of AN's might be available in 10 years?

Anyway, that is the approach I am taking.  You have to do what is best for you.  I just cringe when I see members who have a diagnoses with a relatively small AN and then jump right into potentially life altering treatment.  My neurosurgeon says the skull base tumors like ours are the SINGLE MOST COMPLICATED brain surgeries that can be performed and he is among the best surgeons that do this kind of work.
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.

Echo

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Re: Close to make decision
« Reply #7 on: August 10, 2014, 12:57:45 pm »
I agree with ANGuy, that your AN is small enough you should take your time to research your options thoroughly and make a decision without rushing.  Be aware that your AN can grow without you noticing any change to your symptoms so maintaining follow up MRI's is critical.  Also be aware that AN's while typically slow growing can take on growth spurts.  I was diagnosed with a 1.8cm AN which grew to 2.4cm in less than 1 year.  I opted for Gamma Knife and have been doing great!

Cathie.
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

CS

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Re: Close to make decision
« Reply #8 on: August 12, 2014, 03:25:48 pm »
Hi ANGuy,

Thank you for your response-

My husband and I sought advice from 3 neurosurgeons, 2 radiation oncologists, and 2 ENT specialized skull-based surgery in a month.

Even though we all here have AN tumor, every person's AN is unique and often individual's personality and current situation affect the decision making.
I totally agree with you that if W&W fits to my situation, that will be my first choice and I would at least wait for another 6 months.

My husband and I had just started fertility treatment in April in hopes of having child(ren). First I was diagnosed with sudden hearing loss and I had to stop the fertility treatment. Then, I was diagnosed with AN and now the treatment and our plan are really put on hold.... I am about to become 40 yrs old and as you age more, it makes the fertility treatment more and more difficult.  Also, fertility treatment can take long time until see the result or even just do one procedure.

One oncologist told us that he will not give ok to start the fertility treatment until after 6 months of radiation treatment. All of the doctors told us that if I become pregnant, they will neither do operation or radiation. If I don't treat now and focus on fertility treatment, I may be ok for next several years.... but if my tumor grows while I am getting treatments or pregnant...? I had to weigh the risks considering the current situation in my life. I met a lady in my local support group that she was diagnosed with 0.8cm AN and decided to W & W because her age. However, her tumor grew twice as big in 6 months so she treated with radiation. I know this is an example, but it's a possibility as everyone's AN is different.

Again, thank you for your advice and I'm with you- if members who have a small tumor, there is NO rush to make the important decision in their life.

Good luck on your W&W journey and keep us posted.
Diagnosed: 06/04/14
12mm x 6mm x 7mm AN
Seeking best treatment option! :)
09/24/14 Retro-Sigmoid Removal

CS

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Re: Close to make decision
« Reply #9 on: August 12, 2014, 03:31:25 pm »
Hi Cathie,

Thank you for your post-

Yes, I agree with you that taking time and research the options are very important for the outcome of everyone's AN journey. Since my MRI in June, no one knows that if my tumor has grown.  I am recently experiencing little tingling on my left side so hopefully it has not grown much.

I'm glad to hear that you opted for radiation treatment and are doing great.
Diagnosed: 06/04/14
12mm x 6mm x 7mm AN
Seeking best treatment option! :)
09/24/14 Retro-Sigmoid Removal

raji83

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Re: Close to make decision
« Reply #10 on: August 15, 2014, 12:33:23 pm »
i have same size of AN. Got diagnosed in june. I am 30 yr old. I am gng for translab coz it seems small operation. Always rem retrosigmoid has high chance of having post op headaches. Radiation is nt good for my age. So fianlly gng for translab. I had 6 opinions. Hope this helps. Many wishes for you.

CS

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Re: Close to make decision
« Reply #11 on: August 15, 2014, 04:53:39 pm »
Hi mot83

Thank you for your reply-

I met several surgeons and two different approaches were suggested. After much prayers, I opted for Retrosigmoid as my surgeons try to save my hearing nerve though I don't have much hearing left, I can possibly have Cochlear implant if I later decide or my good ear becomes deaf. Also they (neurosurgeon and ENT surgeon) works as a team, their approach will be quicker and have figured out the way not causing headaches. 

I am glad to hear that we both find the treatment that is best for us. Good luck and keep us posted!
Diagnosed: 06/04/14
12mm x 6mm x 7mm AN
Seeking best treatment option! :)
09/24/14 Retro-Sigmoid Removal

raji83

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Re: Close to make decision
« Reply #12 on: August 21, 2014, 07:40:05 am »
Good to know that you have choose the surgery approach. I got all the knowledge about headaches from this forum and meeting docs. I am glad if they have figured out the way to avoid headache. Good Luck again and hope you get well soon. I will be going for my surgery sometime in oct. You are going with which doc? stay in touch and take care. And most imp BE POSITIVE

CS

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Re: Close to make decision
« Reply #13 on: August 22, 2014, 04:23:20 pm »
Hi mot83,

Thanks and I just received the call today and my surgery has been scheduled for September 24th.
Let's think this way... we both will enjoy the Thanksgiving and Christmas not thinking about treatment or surgery rest of the year! :)
Diagnosed: 06/04/14
12mm x 6mm x 7mm AN
Seeking best treatment option! :)
09/24/14 Retro-Sigmoid Removal

sandyinwisconsin

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Re: Close to make decision
« Reply #14 on: August 22, 2014, 04:55:11 pm »
Best wishes for your surgery. I spoke to a lady about your age during my decision making
and she had great luck with her retrosigmoid surgery.  She was back to work within a week and
she doesn't  have any headaches.  Her tumor was golf ball size. 

I admire your braveness!! 

Sandy
1 cm AN deep in the boney canal.  Treated with 26 treatments of radiation in December, 2013.  Please pray with me that this worked.