Author Topic: Under 40?  (Read 14443 times)

ms444

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Under 40?
« on: February 25, 2015, 05:37:43 am »

I was recently diagnosed with a 1.6 cm AN after progressive hearing loss and tinnitus.  i am 37 yo.  i have been struggling so much with what to do...have been looking at surgery and radiation, talked to tons of specialists in both camps (house, stanford, upmc, nyu, mayo among others)...
I feel like, in general, recommendations are slightly biased towards surgery due to my age....most say radiation would be 'reasonable alternative'... but i think docs are a bit lukewarm about it...
my gut has been leaning towards radiation, but am scared about failure and the need for potential surgery in the future, which would lead to a higher risk of facial nerve injury.


what has been others experiences in this age group?


CHD63

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Re: Under 40?
« Reply #1 on: February 25, 2015, 07:47:46 am »
Hi ms444 and welcome to this forum .....

I was not under 40 at the time of my diagnosis of acoustic neuroma so I will not attempt to address your question on my experience.

When dealing with medical professionals, many doctors will encourage a treatment option most in line with what they are comfortable doing.  That being said, only you should make a treatment decision, based on what experienced (in treating ANs) doctors have recommended to you.

There are many excellent physicians around the country who will review your MRI CD and give a recommendation.  Is that what you meant by talking to specialists in both camps?

Many thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

ANGuy

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Re: Under 40?
« Reply #2 on: February 25, 2015, 03:35:41 pm »
All any of us can say is what WE WOULD DO, not what you should do.  I'm 47 and mine is a little smaller than yours.  I'm going to wait mine out as long as I can.  If it needs to be treated (likely), and I am under 60 (likely), I will get surgery.  With radiation the way it is now, I am not too impressed with it.  That is my lay opinion.  My uneducated OPINION is that radiation is best for people who can't tolerate surgery due to age or other illness.  Keep in mind that many highly educated Drs and researchers will tell you my opinion is wrong.


You have to weight the upside and downside of all types of treatment and decide which is best for you.  The possible downside for radiation, while rare, is truly tragic.  I am a worst case scenario guy and don't want to mess around with the possibility of it.
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.

rupert

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Re: Under 40?
« Reply #3 on: February 25, 2015, 10:03:48 pm »
Please enlighten us on the truly tragic downside of radio treatment???

ANGuy

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Re: Under 40?
« Reply #4 on: February 25, 2015, 10:34:01 pm »
Please enlighten us on the truly tragic downside of radio treatment???

No.
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.

Susan59

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Re: Under 40?
« Reply #5 on: February 25, 2015, 10:52:15 pm »
There is no "truly tragic downside" to radiation or any other treatments.  I consulted with 4 docs - two of them actually do both radiation and open-skull surgery. They told me the "failure rate" of radiation and surgery is about the same. As for a "truly tragic downside", well, that can happen with any medical procedure. I know of someone who died during a tonsillectomy. No one could have predicted that.

ANGuy

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Re: Under 40?
« Reply #6 on: February 25, 2015, 11:05:52 pm »
Death comes in different forms and that is as far as I an going to go other than to say it is irresponsible to to deny the rare, though horrific, possibilities involved here.
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.

CHD63

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Re: Under 40?
« Reply #7 on: February 26, 2015, 07:30:30 am »
We need to be very careful on this forum about stating our own experiences primarily.  If we refer to other information, we need to include documentation of where it was resourced so others can read it, as well.

That being said, the radiation given during Cyberknife, Gamma Knife, or fractionated radiation treatments for treatments of acoustic neuromas is a very low dose of radiation and targeted specifically to the tumor.  The risk is minimal.

..... back to the original post about patients under 40.

Thanks.  Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

ANGuy

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Re: Under 40?
« Reply #8 on: February 26, 2015, 07:51:34 am »
We also need to be responsible and to not gloss over the fact that malignant brain tumors ARE a rare, but never-the-less, real risk with radiation treatment.  We also need to be frank and realize that the death that comes from these is truly terrible.

It is irresponsible to put on rose colored glasses when describing how "perfect" radiation is especially with regards to patients who can expect to live another 40-50 years.  There are many unknowns regarding truly long-term risks, and then there are the KNOWN RISKS that some don't want to acknowledge.

Asking me to provide "documentation" is just a way of brushing off the argument.  There are tons of documentation and more is being generated as we speak.  The Drs. who perform these treatments are going to be able to provide it  much better than I can.

When I asked my Dr what the downside risk to radio treatment was, he said "Really bad things can happen".  I pointed out that there is a very low risk I could die on the table in conventional surgery and he said "No, what I am talking about is REALLY BAD".  That was all the "documentation" I needed at that time.  I wasn't on the verge of getting treatment and that was all the info I needed at that time.  He does both radio and conventional surgery, he knows what he's talking about, he's seen what can happen, he told me about it as he should.
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.

ms444

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Re: Under 40?
« Reply #9 on: February 26, 2015, 01:58:05 pm »
everyone is certainly entitled to their opinion, however repeating one provider's perspective is hardly equivalent to evaluating the data and making an informed decision.  it is obvious that 'bad things can happen'.  but to leave it at that is to simplify a very complex issue.

ANGuy

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Re: Under 40?
« Reply #10 on: February 26, 2015, 03:34:43 pm »
everyone is certainly entitled to their opinion, however repeating one provider's perspective is hardly equivalent to evaluating the data and making an informed decision.  it is obvious that 'bad things can happen'.  but to leave it at that is to simplify a very complex issue.

It's not "one provider's opinion".  It is common knowledge, and proven through research, that radiation treatment can, and sometimes does, lead to malignancies.  I simplified the horror of dying from a brain malignancy because I didn't think it needed to be described in detail. 

There are simply too many posts in this forum, not thread but forum, that act as though the worst thing that can happen from radiation is dry eye, tinnitus, etc that most of us are effected by anyway.  That is not the whole truth.  The whole truth is that there is the possibility of a malignancy caused by the radio treatment that is not sufficiently described as "terminal".  To simply call it "terminal" is inaccurate. 

How much should the risk of a malignancy factor into the decision?  That is up to the individual getting the treatment.  The older they are, the less of a factor it should be.  Should it make or break their decision?  The answer is different for a 30 yo than a 70 yo.  At 47, I would not get radiation.  If I make it to 60 and I need treatment, I may very well get radiation because I probably wouldn't live long enough to get a malignancy.  By the time I turn 60, the radio treatments might be perfect in which case getting it would be a no-brainer.

I'm not telling anyone not to get radio treatment.  I am simply telling, since there are some who seem to think I am making this up, that there is a VERY BAD thing that CAN happen and that the younger you are, the more you should consider it.
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.

rupert

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Re: Under 40?
« Reply #11 on: February 26, 2015, 04:38:46 pm »
"Common knowledge and proven through research " is simply not true and cannot be backed up by any data or statistics.

Back to the OP.   Age could certainly be a factor in treatment.  When you're young you have a much better ability to bounce back from injury than when you get older.  Of course , what do we consider young?  We all feel young right. :)  Is 37 young? maybe. There are other more important factors when deciding treatment options.  Size and location are probably most indicative as to treatment options.  The experience level of the treatment team is also more important than age.  I would consider these things first over anything else regardless of age.  It looks like you have chosen to get opinions from very experienced doctors.  Getting treatment from experience is key.  Some people tell you that it will just click at some point and you will know it's the right thing to do.  There's some mis-information out there.  You're going to have to sort through it.  I think you're on the right track  and good luck.

ANGuy

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Re: Under 40?
« Reply #12 on: February 26, 2015, 05:17:40 pm »
"Common knowledge and proven through research " is simply not true and cannot be backed up by any data or statistics.

Quote
One of the major, long-term side effects of radiation therapy is the development of a second cancer, frequently in the head and neck area. This often takes years to develop.
http://www.texasoncology.com/types-of-cancer/brain-cancer/radiation-therapy-for-brain-tumors/


There's some mis-information out there.  You're going to have to sort through it.

You are correct about that!
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.

ANGuy

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Re: Under 40?
« Reply #13 on: February 26, 2015, 05:36:20 pm »
"A second brain tumour

In very rare cases, you may develop another brain tumour many years after you were first treated. This is because, although radiation kills cancer cells, it is also a risk factor for developing them. Unfortunately, tumours caused by previous radiotherapy are often malignant and tend not to respond very well to treatment. It is very rare to get another tumour caused by radiation after radiotherapy for brain tumours but we've mentioned it here because it can happen."


http://www.cancerresearchuk.org/about-cancer/type/brain-tumour/treatment/radiotherapy/long-term-side-effects-of-brain-tumour-radiotherapy#second
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.

NYLady

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Re: Under 40?
« Reply #14 on: February 26, 2015, 06:24:38 pm »
You know, let's just step back for a minute....No one is saying that radiation therapy is perfect or even that it will necessarily end in disaster.  I know whenever I have any type of medical procedure, particularly surgery, you sign a pound of paper acknowledging that there could be negative outcomes for one reason or another and releasing the provider from responsibility.  This means YOU are responsible for deciding the risks you are willing to take.  These things they mention may never happen.  With radiation, the risk of possible future malignancy, or need for possible future surgery being more difficult is mentioned because it COULD happen.  I believe age is a consideration for radiation; that is why many doctors encourage young, healthier people to have surgery.  They are healthy enough to withstand the lengthy operation and deal with complications IF they occur, and in most cases, the tumor is removed.  With radiation, the tumor is not removed, but its makup is changed so that it hopefully will not grow and could possibly shrink.  All treatment options have one kind of risk or another, even W & W.  My feeling is younger patients, should seek out the most qualified providers for both surgery and radiation...ask these questions right up front...take your time to weigh the answers, decide which risks you are willing to take and then proceed.  AN Guy's choice was to W & W.  For HIM, that was the right thing to do because HE decided the risks inherent in either surgery or radiation were not ones he was willing to take.  The way it was explained to me, and from what I have read,  while radiation is becoming more and more common, is improving by the day, and has shown remarkable results so far, not enough time has elapsed from its inception to let them see performance for more than 25 years or so.  Does NOT mean it is not a valuable treatment, an effective treatment, or one that should not be considered for people of whatever age.  (I chose to have it myself) People who are too sickly for surgery either because of age or illness...older people with small tumors, or people who just cannot stand the thought of brain surgery, would probably be the ones to whom this would be most attractive.   Sometimes, a tumor is too large for radiation and is becoming a danger and the person is older.  So many scenarios.  See as many highly experienced AN doctors as you can, be candid about your fears and expectations, weigh what they say against your own gut feeling and do what YOU feel is right for YOU.  Like Clarice said, not one of us asked for this diagnosis, but here we are.  We cannot allow fear to paralyze us and prevent us from making a necessary decision, or we would never take our heads out from under the covers.  It is a most difficult position to be in, but in most cases, we can move slowly enough to allow plenty of time to consider all options from all angles.  For some, the choices are limited and in a way it makes is somewhat easier.  All I can say is,there really is no RIGHT answer or one size fits all solution.  Each of us is unique with what we bring into this condition...therefore our decisions will all have to be arrived at based on our own criteria for each individual situation.  Wishing the best to all  of us as we go through this journey.

NYL

 


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