Author Topic: I just found out yesterday.  (Read 4668 times)

fbarbera

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Re: I just found out yesterday.
« Reply #15 on: October 24, 2008, 09:30:40 pm »
Hi Tisha,

Since your doctor is suggesting wait and watch, I'm guessing your tumor is still relatively small, which is a good thing.  I was diagnosed with a 2.5 cm AN last summer (way too big for my taste but still considered "mid-sized" in the scheme of things).  After lots of research and multiple consultations, I decided to go with Cyberknife.  Here is what I concluded:

* Surgery and radiation have about equal success rates -- the treatments are successful around 95-99% of the time, which is amazing in both cases.
* There is virtually no risk of facial nerve injury in radiation, but there is a meaningful risk of facial nerve injury in surgery.  That risk increases with the size of the tumor but it is always present.
* You are much more likely to lose hearing in surgery.  The translab approach guarantees hearing loss.  Other approaches give you a moderate chance of hearing preservation, especially if your tumor is small.  On the other hand, with Gamma Knife, 40-65% of patients with useful hearing retain it after the procedure.  With Cyberknife, the percentage is more like 75% and maybe more.  My hearing is still unaffected about 14 months after treatment.
* The medical studies I have found show that patients treated with radiation have a better quality of life after treatment than those who have surgery.  Below are the examples.  Hopefully, the medical community will continue to publish work in this important area.  I did not find any studies showing that surgery patients have a better post-treatment quality of life than radiation patients, but would appreciate being pointed to some if they exist.

http://www.ncbi.nlm.nih.gov/pubmed/16823303?ordinalpos=13&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
http://www.ncbi.nlm.nih.gov/pubmed/12450031?ordinalpos=45&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
http://www.ncbi.nlm.nih.gov/pubmed/15854240?ordinalpos=21&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

* The post-treatment complications from surgery can be quite problematic.  For example, some patients lose moisture in their affected eye, requiring an intensive regime of daily eye care.  Some patients experience debilitating headaches for some time.  Radiation patients do experience post-treatment symptoms, such as dizziness, head fullness, fatigue, and depression.  After my own treatment, I experienced wide fluctuations in symptoms, which I describe in detail in my website (see my signature line below).  The issue of post-treatment symptoms is difficult to evaluate, since there simply isn't enough objective information available.  However, to my mind, the information that is available (such as the studies above) suggests that overall, post-radiation symptoms are less problematic and less debilitating than post-surgery symptoms. 
* Another important difference, of course, is that in surgery the tumor is removed while in radiation it is merely killed.  Psychologically, this is a powerful pull towards surgery.  However, what I learned from speaking with doctors is that unfortunately, removal of the tumor does not eliminate the symptoms associated with the tumor.  Yes, the tumor is gone, but you still have daily reminders of its former presence with ongoing post-treatment symptoms.  The same thing generally is true with radiation.  There are lingering side effects from the treatment that improve slowly with time.  But as I see it, the radiation symptoms are less intense and have less of an impact on your daily life, plus you get a good shot at keeping your hearing and you save your facial nerve, two other important factors that affect your sociability and overall lifestyle.

These are the reasons I chose the treatment I chose.  Needless to say, this research is about averages and statistics.  Some patients have superb outcomes in surgery, and some radiation patients have intense post-treatment side effects.  Lots of folks will say go with your "gut" when it comes to a treatment decision, and I agree with that completely.  But first do the research and speak to multiple doctors (both microsurgeons and radiotherapists).  Once you have the facts, and once your questions are answered, you will know which treatment is right for you.

You can read more details about my research, along with some more tips and resources, in the website below  (in my signature line).  Be well and please feel free to contact me if I can help in any way.

Best,
Francesco
 
 

« Last Edit: October 25, 2008, 10:07:37 am by fbarbera »

marguerite

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Re: I just found out yesterday.
« Reply #16 on: October 25, 2008, 07:44:50 am »
Hi tisha –

kudos to you for your quick outreach mode. It is scary, but not the end of the world. I remember when ent told me November '06 - he was so blasé how he stated… “there is a brain tumor on your films�. You know, in the movies, when the camera is focused on a person and the background goes out of focus or vice versa? That was my immediate sensation. And first words were “is this where I start crying�. ent stated I had options and if I am going to have a brain tumor, this is the one to have. Researching this is accurate. Although I crumbled when I told mom, I put on the brave face w/my 17-yr old son. I told him I was going to name it, which I did. I, and everyone else, including doctors, call tumor BIF because the first day, all I remember saying is “benign is fine�.

My 1.5c an, I was told, was borderline surgery. I went w/the 6-wk radiation treatment, which wasn’t bad. I brought in my Stevie Ray Vaughan cd and faithe, my tech, had it cranking before I hit the table. She was great, I loved her. And I considered that “e� on the end of her name for extra – extra faith. I have annual MRIs in October. Just had my second two weeks ago and follow-up w/dr says “no change�. Ok – I can handle that. It’s the balance issues and continuous hearing loss that I find troublesome, but… I just keep reminding myself “extra� faith.

Hang in there!

marguerite

MAlegant

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Re: I just found out yesterday.
« Reply #17 on: October 26, 2008, 07:07:02 pm »
Hey Tisha,
Welcome and I'm sorry.  BUT, we are here and ready to listen, offer advice, and otherwise provide support.   Sounds like you're doing your due diligence, gathering information, and based on what you learn, you will make a decision, whether it's w&w, surgery or radiation.  As you can see from my signature, I had surgery this past summer and am doing fine.  (Also put on a brave face for my 20 year-old but he knew better!)  Hang in there, remember to take care of yourself during this stage, sleep, eat well and exercise if you can. 
Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Kate B

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Re: I just found out yesterday.
« Reply #18 on: October 26, 2008, 08:00:56 pm »
I have learned some new things to ask my doctor already, for instance...how close is my AN to my facial nerve.  I find the thought of having facial paralysis just as scary as hearing loss in a way.  

Hi Tisha,
Yes, everyone is very supportive on this list. We are all a part of the same "club AN".  Here is a thread with a list of questions to ask the doctor.
Make sure you go in with a list of questions, cause it is easy to get sidetracked by what they are telling you...

http://anausa.org/forum/index.php?topic=53.0

Also, what size is your tumor?

Kate

« Last Edit: October 26, 2008, 08:25:03 pm by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

1cANAdian

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Re: I just found out yesterday.
« Reply #19 on: October 26, 2008, 09:17:53 pm »
Hello Tisha,

Welcome to the forum!  There is a great deal of experience and a wide range of experiences to draw on from the ANA members.  When your tumor is diagnosed and you find it is in the earlier stages, you certainly have time on your side to do research and consider the options.  As others have suggested, do your consult available resources (www, Medical Journals, etc) and with experts.  Take your time and truely evaluate the information you receive.

I have talked to a couple of "survivors" locally and their stories and treatment paths are totally different, but the outcomes are similar - quite positive.   My own emotional journey, to date, has been quite flat.  No wild rides for me.  The reason is that I viewed the diagnosis as a fact that explained my symptoms.  I cannot change that diagnosis. However, dealing with what lies ahead in as positive a way as possible is very much in my control.  This message has been repeated to me many times. And I would say the same to you. 

You've started in a very positve way by seeking out information and advice from people who have been through, or are going through, the same ordeal.  Keep that attitude going and you will not just cope, but you will do well through your course of treatment.  We all have your best outcome on our collective wish list.  That is a lot of positive in your favour already. 

Cheers!

Ken
Right side trans lab surgery on Dec 8th, 2008
4+ cm AN removed
Post Op Symptoms: SSD, tinnitus, facial numbness, minor balance issues, weakened facial nerve
Attitude: POSITIVE

carter

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Re: I just found out yesterday.
« Reply #20 on: November 24, 2008, 11:54:14 am »
my dr may be heartless?  when my wife asked about fatigue after Ck, she said to eat a well rounded balanced diet.  My wife said that we have been gong to Weight watchers.  the dr said that they have a good plan and that we should continue ....... geeze . .... when i was little and had my tonsils out , i got ice cream. 

now i get to have the little Bas(*^&d  zapped and i have to stay on a diet.


what a rip.  i think that milk shakes, peach cobbler, and cashews might be the true road to recovery?

i hope that my humor does not offend anyone - just to work on my own spirits!

carter
Diagnosed in fall of 2008 with 1.6 * 2.9cm AN on left side. 

Scheduled CK at Oklahoma Cyber Knife in December, 2008 and decided not to proceede on 2nd date that CK was scheduled.  I fired them.

CK performed at St John's Hospital (Tulsa)Jan 2009

leapyrtwins

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Re: I just found out yesterday.
« Reply #21 on: November 26, 2008, 07:19:24 pm »
Carter -

I'm with you  ;D

Although I didn't have CK (chose surgery) your plan of milk shakes, peach cobbler, and cashews sounds great to me.  Personally I'd throw in a little chocolate too  ;)

Oops, there goes the Weight Watchers  :D

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways