One more question about the radiosurgery adventure

[amye]

Hi everyone;

So this is not a technical question but a more general/experiential one.  As I move closer to a firm decision about treatment I'm beginning to worry about how I will feel after radiation (be it CK or GK) in terms of the ongoing nature of things. I mean, I wanna be DONE with this! It is consuming so much of my energy these days, and I want to be on the proverbial "other side" of it. Given that radiation takes so long to do its thing, has anyone experienced ongoing worry/anxiety/stress for the months following treatment? Even after the tumor has shrunk or stabilized, does anyone have trouble dealing with nagging worries about regrowth or that little threat of oncogenesis? Although I do not want to have surgery, there is something more definitive about it that keeps me wondering...

I know there's no magic answer here, but the input of those of you who have been there (and done that) is greatly appreciated and valued!

Cheers,
Amy

[eab]

There will be far more useful answers than this one from people who are much further out, however, here's my two cents.  I had the Gamma Knife done yesterday and for me it was such a release of stress and anxiety.  Yes, there is the inevitable and annoyingly undefined side effects to come but my anxiety is not at all what it has been for the last month.

For me, I think it has a lot to do with confidence in my choice of treatment and in my choice of doctors.  I wish for you to find the same peace that I have, at least for today, once you've made your decision and gotton it done.

Best of luck.
Beth

[CHD63]

Amy .....

I cannot relate any experience with GK or CK because surgery was really the only option I had at the time.  Your AN is very small and your symptoms seem to be more stable right now so take your time in the research/decision-making phase of this journey.  You need to feel totally confident that this is the correct decision for you, with the best medical professionals you can find.

Some of us just wanted the thing out of there ..... others have had small children, jobs, etc. to consider.  The statistics are very much in our favor that there will not be regrowth or oncogenesis, regardless of the treatment option so I think you can put that worry to rest.

As I know you have read on this Forum, you ultimately have to do what is best for you ..... given your symptoms, family & job concerns, and your personal worry-level.  Each of have unique bodies/brains so no one can really say this (or that) is what you should do.  You are doing exactly what you should be doing right now ..... gathering all of the information you can and then you just have to listen to your inner self (many of us prayed really long!!).

My thoughts and prayers as you walk through this process.

Clarice

[ppearl214]

Amy

I started this discussion late last year, here on this site and on the CK boards... here are responses from the CK support website:

http://www.cyberknife.com/Forum.aspx?g=posts&t=898#jumptobottom


This may be of help.
Phyl

[ppearl214]

Amy

addendum to what I posted above....

I found the link on the site (here) for how others that participate here answered the same question... may be of value:

http://anausa.org/forum/index.php?PHPSESSID=2a0e0883177b912a4c3221d17bb92378&topic=7875.0


Hope this helps.
Phyl

[sgerrard]

There will be far more useful answers than this one from people who are much further out, however, here's my two cents.  I had the Gamma Knife done yesterday and for me it was such a release of stress and anxiety.

I love this answer, Beth. It illustrates what being a postie is all about. One day or one year, it doesn't really matter. It is done!   

Amy, when the first six months went by and the first follow up MRI came due, I felt some trepidation going into the tube o' gloom. What if? Once that came back thumbs up, though, the whole issue receded from my mind, and these days I scarcely think about it. The follow up at 18 months was a morning off from work and nothing more.

Now I am more worried about the remains of my 401k, and how in the world can I knit all these hats? 

Steve

[amye]

Thanks to all for your kind and thoughtful replies! I would feel sooo alone through all this without you. I don't know why my anxiety is peaking right now, but I guess its because I'm getting closer to making a decision and I'm having to face the reality of having an AN and having to get treatment (with all the risks and such that go along). I guess my W&W period was a bit of a "denial" stage for me.

Thanks, Phyl, for the links. I followed them and they were very helpful -- but also sobering. I guess there's no escaping some pain/anxiety/unpleasantness in this deal.

Again, can't thank all of you enough for being there,
Amy

[Vivian B.]

Hi Amy,

Great Question. I have been wondering the same thing. Sometimes I think that there is really no definite answer about anything in life. So the same way that you may experience anxiety during the wait times after procedure, you don't know what else can happen from minute to minute every day in life. We just have to have faith that everything will work out for the best. I actually posted a thread to see if anyone had any recent stats on GK treatment and the aftermath, but didn't get any replies, maybe no one saw it. One more thing, I was told by my Neurosurgeon and Oncologist, that when the AN is small and the symptoms are manageable, they would rather not treat it. There have been some cases where the AN did not grow for years or stopped growing. My surgeon even said that sometimes they shrink as they are vascular. As far as the hearing is concerned, once damaged it is irreversible anyway, so I am not sure how much of it you will actually save by doing the treatment now. I think overtime it deteriorates but I may be wrong. Hope you find some serenity with all of this confusion. I as many others on the forum can definitely sympathize.   

Vivian

[ppearl214]

Thanks, Phyl, for the links. I followed them and they were very helpful -- but also sobering. I guess there's no escaping some pain/anxiety/unpleasantness in this deal.

Hey Amy

We don't try to "sugar coat" things around here and that is why we are all here... to help each other get through the pain, the anxiety, the unpleasantness..... but, to also cheer each other on and celebrate when things are on the right paths for wellness.... so, keep the postives in mind as well.   Heck, I'm over 3 yrs later... I don't have to be here, as I'm doing well (re: my AN issue, which really is a non-issue for me now).... but I remain here to help others, like you, during the journey.   Sobering, yes..... but the support and such..... oh, we're right with you

Phyl

[Sue]

Hang in there Amy.  This road is a long journey and like Dorothy and her pals on the yellow brick road, we have some things to deal with before we get to the Emerald City and even then, we have to make sure that Wicked Witch is dead before we can celebrate.  Hmmmm How's THAT for a metaphor!     You finally get to a place where you say, "Well, I and Medical Science have done all we can do at the moment, so let's just let nature take it's course here and then deal with whatever comes along, if it comes along. "  And then you find your Happy Place and try to get on with your life.  Granted, that darn thing is hard to ignore...but time is on your side.

Best wishes,

Sue in Vancouver

[goinbatty]

Hi Amy,
I completely understand what you're going through.  I'm a nurse and when first diagnosed, I just wanted it out.  Over time and after loads of reading on this forum as well as researching and consulting multiple physicians, I ended up with CK.  The first day I was a little bit nervous only because the day had finally come and I wasn't totally sure of what to expect.  Days 2,3,4 were like, ok I'll enjoy the music.  On day 5, I was antsy.  It was as if here we finally are....light at the end of the tunnel.  I was running on adrenalin.  The tech told me for some reason many people have the same response on the last day.  I actually got tickled at myself. 
As far as worrying about it afterward, I didn't all that much.  Was tired for a few weeks.  Had some mild side effects at around 6 months but after that, business as usual.  Right before MRIs is when I think about it again.  Otherwise, not much at all.  And then it's not worry.  More like curiosity.  Treatment is over with.  If anything else happens, guess I'll just deal with it.  Otherwise, just thanking the good Lord above for seeing me though. 
Sandra

[NE Farmwife]

I had the CK at Stanford in January.  I just had my 6 month MRI and hearing test.  I am just getting them ready to send to Dr. Chang at Stanford so I want to wait to see what he says before I can post anything about the results.  My main symptom before my diagnosis was numbness in my lower face and hearing loss.  At the time of diagnosis, I also seemed to have lost most of my sense of taste.  However, before I had the CK, most of it had come back and it has stayed the same.  I don't feel any different after having the CK than I did before.  I didn't have really noticable tinnitis when I was diagnosed but about 2 weeks later, it really came in loud and clear.  It is the same today and if I am busy, I don't notice it at all.  The rest of the time it is a small annoyance.  I am in my mid 50's and had started to do some running last fall before my diagnosis, quit for the winter, and started again this spring. I feel like my health is better than ever.  I am not going to let my AN stop me from doing what I want.

I may not get as stressed as some people do but I think you just take what life gives you and do the best that you can with it.  The first 6 weeks after diagnosis was the worst and it seemed to encompass all of my time and thoughts (during the Thanksgiving and Christmas holidays) but after making the decision to have CK it seemed to get better.  I was probably more stressed about being gone from home for the week than about the treatment.  We left our 17 year old home for the week and he is a great kid so there wasn't any problems but that was a bigger worry for me than the treatment.  Since my treatment, it has slowly gotten put on the back burner.  Always there, but not at the top of my mind like it was.  It is very livable.  I would say that after my diagnosis I felt like it was an up hill battle but once I had the treatment, (it may depend on what treatment you have though) I was on the downhill side.  I was pretty relaxed about my recent MRI and hearing test and just kind of take it all in stride.  From what I can tell, things are on schedule but will wait to hear from Dr. Chang.