Watch and Wait > For those in the 'watch and wait' status

30 y.o female, 2.5cm leftside AN... any advice/comments appreciated :)

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RGG:
Hi Chelsea,

Another Torontonian here, I was diagnosed a couple of years ago in my mid-thirties with a ~3cm AN.  I ended up having surgery about a year ago with Dr. Akagami in Vancouver, and so far I'm happy with my decision since the tumour was completely removed, without any major side effects (except hearing loss). 

I too was considering radiation at the beginning, but all dr's I met didn't recommend it, even the Gamma Knife centre in Toronto (they said ultimately it's up to me and were willing to try).  One thing that worried me about radiation is that I read a lot of cases where it may work initially, but in a few years the tumour starts to grow again, and then surgery may become more difficult (according to some surgeons).  Also if you have surgery after radiation, you can't have radiation a second time in the case a small piece of the tumour cannot be removed. 

I haven't met Dr. Cusimano, but I've read on here that he does both surgery and radiation, and gives the most unbiased recommendation (which was not the case with all doctors I met).  I would think for your tumour size, radiation should still be an option, but you'd probably need to do it before it has grown any larger. 

With surgery on the other hand you'd have a bit more time to decide where you want to do it.  In Toronto there is another surgical team, Dr's. Rutka and Tymianski at Toronto Western.  If you decide on surgery you also need to decide on the type (translab or retrosigmoid), since different doctors have different preferences, and each has its own risks and benefits.  If you still have useful hearing then retrosigmoid will give you a chance to retain some hearing.

Ultimately it's a tough decision, and I wish you good luck in your further consultations and MRI's. There is a lot of information on this site from old posts that really helped me learn about all the different options. Feel free to pm me for any questions.

Rumen

midee:
Hi Chelsea, I was W&W for almost 5 yrs. My last MRI show almost doubling tumor size. I am scheduled for surgery in 2 weeks, Feb. 2 at University Hosp. in Cleveland. My tumor had stayed at 9-10mm for all those years and is now 2cm. It grew that much this past year. I am a candidate for GK and surgery. I elected to have it removed. I did not want to go through radiation and then the possibility of doing it again or surgery at a later date. My age also played into my decision. I am 67 y.0. and it very good health.  I've heard all good things about my surgeons, Dr. Bambakidis and Dr. Megerian. I'll let you know how I'm doing in a few weeks.
It's a hard decision, but once you make it, you should find peace.
Dee

chelsea:
Hi everyone, thanks for your replies -- it is really comforting for me.
To RGG - as a Torontonian, how did you get on the waitlist to see Dr. Akagami? I've heard really good things about him in Vancouver but I was told it was like a 2-year waitlist to see him. And I've also been told that Toronto has some top experts in this field, so I feel like it is easier to have any treatment done in my hometown.. but I am curious about your experience traveling there? And which type of surgery did you have?

i find it interesting that none of the doctors recommended GK to you... mine isn't much smaller than yours and all the docs have said it is a good option and that I am the one to have to make the decision. I kind of wish someone else could just make it for me!

Thanks for replying :)

Echo:
Hi Chelsea,

I'm another AN'er from Toronto.  You have hit the jack pot with Dr. Cusimano.  He is a world renowned neurosurgeon and he was one of the specialists instrumental in bringing the Gamma Knife to Toronto.  If you contact ANAC (Acoustic Neuroma Association of Canada) located here in Toronto you will get a ton of valuable local info and contacts.  I highly recommend requesting a referral to see Dr. John Rutka at UHN.  Dr. Rutka and Dr. Cusimano are the top two specialists in Toronto for dealing with Acoustic Neuroma's.  If you are willing to look out of Province then Dr. Akagami in Vancouver would be your next best Dr.

You can't go wrong with any of these specialists they all have amazing reputations and skill!

Good luck on your journey.
Cathie 

Greece Lover:
Chelsea,
Sorry to hear about your story.  Sounds like you've connected with some good people in the Toronto area, which is great. Just a couple of thoughts that come out of my own experience (and one of the problems with this forum is that all the advise is anecdotal and not really scientific, so keep that in mind.)
1. These thing do generally move slowly, and you do not need to be in a rush to make a decision.
2. Take the time to deliberate and then make a decision and don't look back. You can't second guess yourself.
3. I want to address your anxiety.  Anxiety was probably (and continues to be) the hardest part of this for me, and it was something I really did not expect.  I was anxious before the surgery, of course, but it was actually worse afterward.  I, too, convinced myself that I had a tumor on both sides, and felt all sorts of ghost symptoms, etc.  I ended up seeing a therapist for it, which really helped a lot.  So, please don't feel like you're out of the ordinary for feeling anxious. Anxiety is a real medical condition and is going to be part of this experience. 
4. Finally, here's how I made my decision, in case it is helpful.  For me, the tumor was relatively small and I was told I had a 60-70% chance of saving my hearing.  So, I went for it.  I also wanted the thing out of my head and be able to eventually put it behind me.  I was 40 at diagnosis, a bit older than you, but the medical advice I got was that 40 was young for radiation type treatments.  (however, I know there is different opinion on that subject.)  Keep in mind that all doctors tend to have preferred treatment modalities.  Some work in surgical centers, some are experts in the radiation, and this likely has an impact on their recommendations.  So, just ask a lot of hard questions and take your time. I have never once regretting choosing surgery, although I did have quite a good outcome. 

Please DM me if you want to follow up, especially about the anxiety!

Micah

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