Joining the Ranks of Watch and Wait

[iluuvpups]

Hi everyone.  I was originally diagnosed with an AN back in February of this year.  When I had my translab surgery in May, they found I actually had a facial neuroma.  The surgeon debulked it, but left 5mm on the facial nerve so as not to cause facial paralysis.  I found this quite upsetting because I had hoped they would 'get it all' when I had my surgery.  My surgeon stated that he wants to do gamma knife radiation on the remaining tumor six months to a year after my surgery.  I started doing research and have yet to find another facial neuroma patient that has had radiation.  So I decided to get another opinion.  After consulting with Dr. Friedman of HEI, I've decided not to do anything for right now.  I'm just going to get MRIs (frequency to be determined) and watch it to see if it grows.  I can only hope that it doesn't.  And if it does, I'll have more decisions to make at that time.

So now that I've made this latest decision, I have to learn to live with this thing in me.  I've been reading the posts on tips for those in the watch and wait brigade and have found those helpful.  I think the hardest thing for me is dealing with this emotionally.  I have a lot of anxiety and play the 'what if' game all too often.  I'd love to hear from those of you in the watch and wait category as to how you get on with your lives knowing you have this thing in you. 

Thanks for listening and any advice!  --Carol Ann

[leapyrtwins]

Carol Ann -

I wasn't one who chose watch & wait - don't have the type of personality that could have handled that  - but wanted to say congrats on your decision.

There are many long-term W&Wers on the Forum and it's worked well for them.

Good luck,

Jan

[iluuvpups]

Hey Jan.  I really don't have the personality for watch and wait either, which is why I originally chose surgery.  But I also don't see that I have any choice in the matter.  From what I understand, surgery is not recommended at this time since I have good facial function and the tumor is small and I've already had debulking surgery.  The only surgery they could do is to cut the facial nerve and then do a nerve graft.  This would surely cause at least some facial paralysis.  And radiation could perhaps cause permanent facial paralysis and other problems, and Dr. Friedman said that it's not been necessarily proven to help this. 

[Jim Scott]

Hi, Carol Ann ~

I think you've made a logical decision by choosing to observe the remaining AN instead of going for more surgery or radiation, both of which have the possibility of generating problems with facial mobility.  That Dr. Friedman advised 'watch-and-wait' is the clincher.  Of course, I hope you won't see any growth in the remaining tumor and I do hope you can get control of your fears and stop playing 'what if'.  Frankly, I've learned that because tomorrow isn't guaranteed to anyone and we have very little control over such things as tumor re-growth, anyway, it simply isn't worth the time and stress it takes to keep worrying about something that may never happen.  Having a few sketched-out contingency plans 'just in case' is fine but fretting about 'what if' this and 'what if' that is futile, so I hope you can overcome the temptation to do that.   In any case, we support your decision to 'watch-and-wait' regarding future treatment for your tiny, remaining AN.  Now, try to enjoy the end of summer and the beginning of what I trust will be a beautiful autumn. 

Jim

[yardtick]

Carol Ann,

I have been watch and wait since I had my facial neuroma debulked Sept 2006 and I play the "what if" game all the time, must be my personality.    I know it can always be worse, my dearest friend in the world is terminal with lung cancer.  I only surround myself with people who I care about and who care about me, I've left the energy draining vampires by the roadside. 

As Phyl has said over and over "inch by inch and day by day" real words to live by.  You will do just fine and remember we are all here for you.

Anne Marie

[Lizard]

Carol Ann,
Well after being through one surgery I can totally understand why W&W is a good option.  Hopefully you won't see any growth and you can continue to W&W like some of the forumites here who been there for 9 or 10 years!
Good for you, it just proves...always get a second opinion!
Liz