I'm depressed about regrowth....

[Jwh]

Hi,

I'm just sitting here and can't stop thinking about my AN regrowth.  It gets me depressed and scared to think about surgery again.  I don't want to go thru this again! Please send me some positive thoughts...

Thanks.

[Jeanlea]

Jwh,

I'm sending some positive thoughts your way.  Is radiation a possibility for you this time so you don't need to go through surgery again?

Jean

[Palace]

JWH


Keep in contact with people, maybe a support group, post more on this forum for help, perhaps church can help and we are all here for you.  Surround yourself with all the loving friends you have and the people who really care.  

You may contact me in private, if you like.

I was interested in psychology as my first major in college.  Being a patient as, I am also, (like everyone on this forum) I'm sure I could have used some reassuring words when I went through three days of really sad depression, at the time of my researching my options, to make my decision.  (long sentence but, that is how it was)

Take some Yoga classes if you can.  I personally find that helpful.  (just a thought)



Hugs,



Palace

[ceeceek]

Hey JWH,
Try not to let it get to you...you have previous experience and I assume you found out about regrowth due to monitoring, rather than a rude suprise like the first time around..this is a good thing as it means you caught it earlier etc....
Radiation may certainly be a viable option and that will kill it permanantly with very little if any side effects...I would certainly look into it.....try and know we are all here for you.....all things considered it is treatable, not deadly,...I visit the cybernkife support site and look at what other people are going through then my problem seems minor......

My sister hates the "it could always be worse" phrase because yes of course, it could be worse,,the planet could be hit by a nucliear bomb, or the who knows what else....and she says that line of thinking doesnt help her direct problem so I dont mean to be penny annie about it...but sometimes, comparison can be a good thing....
Having a brain tumor just sucks period.....it is a lousy, rotten thing to happen to anyone....but you dont have much choice other than deal with it...and know we all feel your pain....try and look into all your options, I have found research to be a great resouce when I am feeling down.
Ceeceek

[Lainie181818]

Hi JWH
Try talking to House clinic in LA. I just had my first all clear MRI [ 12 months post op ] Dr Brackman said if it ever re-grows it will be treated with Gamma Knife. Someone on this website said house will talk to you on the phone for free. Its worth a call, good luck.
Lainie.

[nancyann]

JWH:  These 'physical bodies' we're in can really get annoying !!!   Always something in the way to bog down the important stuff,
         our spirits.   You will have this taken care of, having gone thru surgery of AN once, I'd sure opt for the 'zap' this time around,
         I sure hope that IS an option for you.
         Always positive thoughts going out to you my friend,    Nancy

[Ellenmn]

I'm very sorry to hear about your regrowth. Hopefully the radiation is an option as the others have said.

I don't have a regrowth  but I can relate to be depresssed. I had the Radiation done first and thought everything was great. It looked to be shrinking for 3 years and just found out that it's growing again and is now larger than it was when they first found it, so  this time I will need surgery. I'm trying to look at the positive side though.

I'm Sending you some positive vibes

[Jwh]

Thanks everybody -

I look forward to reading your replies.  It really does make me feel better.  It's nice to see people actually take the time out to make other people feel better. It's great to hear from people who have been thru or are going thru the same situation. 

Thanks again and I hope everyone has a great weekend.

Jen

[Kathleen_Mc]

Jwh: It was only because of the psychological effects of the regrowth I had it removed when I did. Physically it was not doing me any harm but I was so afraid it was going to kill me, take some great growth leap etc. It was making me nuts essentially. I can understand the worry. I was offered gamma knife but I just wanted the thing out and done with.
Kathleen

[MLB57]

Dear JWH,


I had a 1 cm rt AN removed retrosigmoid Jan 2001--OR report said total removal, but yearly MRIs showed white spot that has grown and last year (June 2006) it was determined that I had residual tumor and re-growing. I have since seen Radiation and Neurosurgeons in RI and MA and--it has been a roller coaster ride because I have two grown children and my oldest (son) is getting married July 15 this year. I waited until the Fall to tell my kids as I didn't want to burst my son's bubble (he planned this proposal on a Gondola w/surprise engagement party afterward) --They were of course upset as I had known for mionths and they wanted to be there for support--but I told them I waited as I wanted to get all my ducks in a row and do research into my options (all true). Then I was all set for Gk w/Dr Noren in RI when  MA General (Boston) Chief of Radiation Oncology, Dr Loeffler (Tops in his field and lots of AN experience) said  50% chance GK would further hurt my already weakened facial nerve and recommended FSR, 6 wks.. Back to square one--Dr Noren (whom I respect and is one of the most knowledgeable in US for GK) has  been gracious in his time w/me promptly replied to my e-mail stating stas that none of his 1,100 paitents who had GK (and some were prior resections like me) had had any facial nerve weakness after treatment... So now I have to decide to go into Boston for 6 wks (M thru F) VS one-day GK...

Dr Loeffler's secretary gave me website pubmed.com as I aked for stats and there is lots of info there-- LOTS --anyway I need to make a decision soon that I feel comfortable with. I admit now that the seed of doubt is planted in my mind about my facial nerve I may decide on FSR.--I'd plan to work 1/2 a day each day and then travel into Boston for afternoon treatments..

But you know, JWH, surgery stats give a 95% chance of no further growth and radation is pretty much the same and I do not regret having surgery first time but I am thankful surgery isn't my only option now. I have had excellent specialists my ins has allowed me to see and now I just have to make my decision.. We really do have much to be thankful for..really...

So try to keep it in a positive perspective from one who is on the same journey as you--and hopefully we all will have positive outcomes to our treatment this time!!!     Regards, Mary  from MA

[jcinma]

Hi Jen,
When I was told I had a reocurrence I was very depressed too.  I had too much knowledge as I had already been thru this.  My recovery the first time was filled with a lot of painful headaches. I wanted to have only  radiation this time but the regrowth was too large (brainstem compression) so I had retrosigmoid surgery again to debulk and then had radiation on what remained.  My recovery the second time around was amazing.  I had absolutely no headaches (truly not one!) and the FSR was effortless and uneventful.  So to make a long story short I can so related to what you are going thru and I wanted you to hear a positive outcome.  I wish you the very best possible outcome!
Jane

[Omaschwannoma]

Jane,

Thank you for your story, truly a positive outcome for you!  I am very sorry to hear of regrowth Jen and Ellenmn.  Once again you are having to make a difficult decision and as for Ellenmn your decision leaves little choice--I'm sorry.  This must be incredibly difficult for you.  I can see you are not alone and those responses mean we care.  I feel helpless as I have no answers, but I do remember most of my family and friends felt the same way when I was diagnosed.  Just their caring was enough for me as I knew my decision was truly my own.  I survived on their support and I hope the same for you.