how do you respond to people?

[Twindy]

As I tell people that I am looking into treatment options, one being radiology, I often get responses of "you don't want all that radioation so close to your brain," or "oh, I woudn't do that, you never know what the long term side effects will be with radiation."  I know they are not experts, but it scares me when people say things like that.  Did anyone get comments like this and how did you handle it--as in, what did you say to them and also, how did you not let it influence you (or perhaps you did?)?  Thanks!

[Jim Scott]

Twindy ~

Yes, I received that kind of response when I told friends that I would be receiving 'low dose' (FSR) radiation for 26 days.  I assured them it was fine and to those who seemed really interested (very few) I explained the concept and that the chances of the radiation doing anything terrible was fairly insignificant.  Most accepted that and agreed that my very conservative, experienced doctors would not knowingly put me jeopardy.  Occasionally, as I was explaining this, just for fun, I would say that I only had some mild side effects, then make a distorted face and utter strange noises (for just a few seconds).  Everyone got the joke and that moment of humor seemed to dissipate any concerns.  Today, almost 6 years post-op and FSR, I'm doing great. 

Jim

[PaulW]

Yes radiation brings up images of Hiroshima and Chenobyl..

Once upon a time my Garbage Truck was called a Garbage Truck. Now they are Environmental Solution Specialists!

I think it is time for radiation treatments to get a rebranding too....

Maybe

Photon Therapy

or

X-Ray treatment

[ppearl214]

Ah, yes... the good ole' days!

On occassion, I share with folks that I lost my sister to a malignant brain tumor in 1969 when she was 13 (yes... true).  I had my CK in 2006 (yep, fast approaching my 6 yr ANniversary).  Almost 43 yrs difference.  Look how far medical and modern technology has come.....  I look at it that my sister helped to be a forerunner to my wellness. She gave so many of us.... including me... could move on in life.

So, when folks mention the "good ole days" of radiation...... I don't sugar coat. Yes, there are cases of malignant occurances (so few to be counted out of the thousands that have been treated with AN radio treatments over the years). The count is so small vs. the success rates, regardless of which form of radio treatment.  Life is filled with risks... and to me, IMO.... its all up to each one of us to determine how much of a risk-taker we are in life.  Sometimes it works (like so many of us here) and sometimes it doesn't (again, like many of us here). A total crap-shoot.  But, when the success rates outweigh the risks, esp. with the advances made in medical technologies........   well, it's definately up to each of us to sit back and determine what will work best.

I sat back.... thought of my sister... thought of the options in front of me... for me, realized how far things have come and realized that the risks existed but.... not outweighed the gains... and made the best, well-informed choice I could for me (I actually went against my family wishes based on my homework... and now I sit here, almost 6 yrs later.... thanking someone above that I did what was best for me.)

Gut will lead the way.....I promise.
Hang in there!
Phyl

Yes radiation brings up images of Hiroshima and Chenobyl..

[Richard_T]

Twindy,

That is an excellent question.  Everyone had great responses.

As far as internal conflict resolution is concerned, the answer is fairly simple, even if depressing.  You don't have many options.  You do not have the option to do something fun and riskless like scuba diving and remaining at 100 feet for several minutes once a year (the example is near and dear to me because scuba is my favorite sport) or something like that to alleviate your AN.  You pretty much have radiation, surgery or to wait unless and until something worse happens.  The surgical option is likely to elicit similar responses from people, e.g. you're going to let someone cut into your head and remove things that close to your brain; what are you crazy or something?  The pressure I received was against surgery and in favor of radiation.  However, despite my CK choice, I didn't let others influence me.  I went with the clinical and common sense arguments respecting my specific circumstances and some soul searching.  IMHO, those are the ways to go. 

BTW - Personally, I use the same response to people as my internal conflict/accomodation, e.g. that the alternatives were worse (for me mind you; not everyone).  Good luck with your decision.

Richard

[MDemisay]

Twindy,


It seems that I have noticed your initial post for quite a number of days now.....Please forgive me for not responding sooner, I, like you are going through some internal conflict on which way to go....It is difficult to decide ! This road can be a very puzzling one especially when you have so many confusing options to decide from, it is maddening!!!!!!

However, after giving it much thought, I would like to respond now.

The answer is simple, it is up to you.

You are going to live with the consequences of the final path you choose no matter what. You can't or shouldn't go back and say it is because of person,persons or group of people I made such and such a choice. No matter how you face it the final choice shall always be yours. Tough as it may seem.

So think carefully about it get several expert opinions( more than 1 or 2) initially I got 14 (trying like hell to avoid surgery)!!!! Then wittle them down. Until you are dealing with the very best docs coupled with the very best in after care. It is not an easy task by any means!

Don't listen to the detractors on one option or another, it in my opinion, is just a waste of time. However, collect all the positive feedback to put on your plus+ chart.

The way I did it and am continuing to do it is by making a plus+ minus- sheet then laying choices out on the floor with the individual docs names on it, get advice from people here who may have had positive outcomes with doctors and treatment options.

Take it from me, I have lost a lot of what I call fast friends, people who were just friends with me because it didn't require much from them, when you tell them this heavy news, they run for the hills!!! I found out but fast, who I really could depend on (make them part of your inner circle, Twindy)! The people who volunteer to pray for you and send good healing thoughts your way would be a good place to start.

The people here can be depended on for their fellowship and comisseration with you because we are going through it or have gone through it. But alas, it is different for all of us.


Research, research and research. There are a couple of things you've got going for you that I didn't have in my earlier search in 2004. Google, Bing, Twitter and a group of friends like us. There will always be a lot of research available one option I also found quite helpful is Medfacts.com search Acoustic Neuroma.

There are if you have Kindle or Nook a number of books online that you can get re: our shared dilemma. Good luck and keep researching. Keep us advised from time to time what's going on with you.

You are in my prayers,

Mike

[Ned]

Mike gave you the straight answer.  Research, interview, research and interview.  I went to 12 different physicians, changed my mind many times until I finally made my decision. I found no one really understood what I was going through.  I sent my records to most all the nationally known facilities, had phone consults with the best.
I knew the right decision like a light went off. Good luck.

[phx]

As I tell people that I am looking into treatment options, one being radiology, I often get responses of "you don't want all that radioation so close to your brain," or "oh, I woudn't do that, you never know what the long term side effects will be with radiation."  I know they are not experts, but it scares me when people say things like that.  Did anyone get comments like this and how did you handle it--as in, what did you say to them and also, how did you not let it influence you (or perhaps you did?)?  Thanks!

I had those responses. I started asking myself why I was letting people who don't know anything about my condition tell me or influence what I decide to do. A "brain tumor" is scary and I did not appreciate people making me fear myself. I realized that processing what people tell me made me scared of my tumor AND distrustful of doctors. Throughout this tumor journey of mine, I've learned to trust my doctors and to stay away from scary stories. It sounds easy for me to say now, but when I was going through all of this, it was AWFUL! You will find a response that works for you eventually. Hang in there!

PHX