I'll be leaving the WW soon

[valerie_g]

Good morning,

To make a story short, I was in W and W mode for the pas year and a half. Small tumor (March 2009) .04 * .03 who grew to 0.5 * 0.4 (July 2010) so 1 mm. My ENT said it is time to get consultation. I will have an appointment with the neurosurgeon and another with the CK people here in Ottawa (we just got the CK last summer). My tumor is in the ear canal instead of being at the “regular” AN site. I have lost almost all my hearing last October suddenly. To be quit honest I thought I was going to be in the WW mode for the next few years and I was comfortable that way. For sure my ENT recommend translab surgery saying that I’m so young (36 years old) considering the risk of cancer in few years. I’ll for sure talk to the CK specialist about that but after I read all of the post it seems more “anecdotal”. I did ask my ENT for studies or fact or evidence of his allegation but he had nothing. The resident working with him even said 5 to 10% of chances. From my profession, I love numbers (I’m an economist so number comfort me). But I also need some real fact. Surgery is not a walk in the park. I think, considering the fact that my tumor is small and that I can live with that thing dead in my body, CK might be a good choice for me. I also have two small boys that I love taking care of.

For sure I’m doing the research part right now but like many others I feel lost and confuse. My ENT was not rushing me in anything but yesterday when I got the result I felt that me being SDD and copping with that was not the biggest challenge to come, it is more making a decision on what to do. My ENT order another MRI in January to see if it’s still growing. Other then the lost of my hearing, I have no other symptom. On another note I’ll get to try the BAHA in the next two weeks and see if it is something that I want. Transear doesn’t seem to be in place in Canada very soon.

I find that the group of  people on this forum is so helpful and I already talk to a couple of you sometimes in the past (MK, Tenai98, Tatianne). I went to all the phases and just when I was confortable with the W and W here I am trying to make the “good” decision.   


Valerie

[TJ]

Valerie

I have been in W&W for about 2 1/2 years.  I am sure that you are aware that AN's are usually very slow growing, and yours appears to be very small still.  You still have all options open to you from surgery to radiation.  According to the specialists that I have talked to, the smaller the AN the better it is to use CK or GK.

Make sure you get all the information to make an informed decision.

TJ

[kenneth_k]

Hi Valerie.

I'm sorry you lost your hearing, but on the positive side, it is no longer a factor in your decision making proces.
Numbers and statistics are comforting to you, but maybe you should listen to your feelings as well.

Personnally, some of the sideeffects I have experienced are statistically unlikely, nevertheless they happened. So I don't go by numbers solely much anymore. I trust my feelings as well.

Best regards, Kenneth

[Jim Scott]

Hi, Valarie ~

I'm sorry you've reached the point where you'll have to come to a decision on how to address the growing benign tumor in your skull, and I realize how difficult making that decision can be.  Although the surgery is challenging, radiation has it's own set of risks as well as benefits.  Frankly, there is no panacea.  Statistics may be comforting to you but they should only be part of your grounds for choosing a treatment approach.  Not a tiny part, mind you, but statistics certainly should not serve as the preponderance of the information you'll use to make a treatment choice.  However, whatever path you chose to arrive at a treatment decision is yours, alone, and I can assure you that we'll collectively support that decision.  Besides, you do have some time to decide.

Jim

[Derek]

Hi Valerie...

I am well into my 9th year in W & W since diagnosis with a 2.5cm AN in March 2002. I also had rapid total hearing loss on the affected side shortly after diagnosis and was advised by an otolaryngologist that I should undergo microsurgical excision 'in the near future'. Following extensive research I decided to W & W and over the ensuing years my AN has actually self-reduced and is now 1.5cm.

Other than your SSD you have no other symptoms that trouble you and it is understandable that you are not compulsed to consider radical microsurgical excision at his stage. Please dismiss any scaremongering claims of streotactic radiosurgery (CK / Gammaknife etc) being linked to a future possibility of developing cancer without any direct evidence to substantiate such alarmist theories.

Your AN is still relatively small at 0.4cm and albeit your last MRI scan indicated an increase in size of only 1mm in about 16 months this figure could of course be attributable to fluctuation of tolerences etc occurring within the MRI process.

You apparently also have a preference to remain in W & W so perhaps it may be adviseable that you put any treatment decision on hold until your next scheduled MRI scan in January whereby your results will provide you with the definitive guidance that you require.


Regards

Derek

[Jackie]

Valerie,

My fellow forumites are giving you excellent advise. Don't panic, your size and location of your AN dictates your urgency. Yours is considered small! Make sure that YOU feel comfortable in which ever way you
proceed, but do not make rash decisons, urged on by anyone. Research all your options thoroughly, so that you get that clear "gut feeling" of how to proceed forward.
Blessings to you,
Jackie

[tenai98]

Valerie
our ENT is the same man...what cyberknife doc did he sent you to?  I have Dr. Morgan and he is awesome...My tumor is now 1.3cm....dx time it was 1.4 and at surgery time it was 2.0cm...last 3 MRIs it has been stable...so if and when it grows, I am doing CK now that it is available in Ottawa....My tumor remains in my ear canal as well....your tumor is still very small....I'm wondering why Schramm wants to move on it. 
Jo

[valerie_g]

Thank you all for your good suggestions and just to have taken the time to answer me.

Jo,

I don't know what doc he send me to for the Cyberknife...I tough I heard Dr. Mahoney but could have been Dr M something...you know with my hearing gone on one side and the fact that I'm French I can be easily confuse!!!! That is why I wand to try the BAHA and see if it help me (I know the BAHA doesn't include a translator processor hahahah). I don't know why suddenly because of the 1 mm  growth he wants me to get consult. My first reaction when he told me was "oh my god what is going on here", I was panicking. Then when I came done and tough about more (especially will reading the post here) 1 mm in 16 months is not a super rapid growth. But it is a growing tumor. Anyway in this Canadian system it is not a bad idea to get a CK consult when there is no rush... well this is how I think after 2 days...

[Mickey]

There is so much to consider when it comes to Watchful Waiting. It really is a good alternative when you do your homework about your own condition and really find you fit the perameters and are comfortable with it. In any case we all know our own bodys and feelings and along with good Dr`s and research can come up with whats best for ourselves. In my opinion one important fact in W+W is age upon dionosis. In my case I was close to 59 with a relitively small AN and figured this may have been with me for a long time and may have reached maturation. So far after 3 years now with a healthy lifestyle and stable results this W+W may have been the right choice for me. Good luck on your decision, Mickey

[valerie_g]

Hello to all,

I got an MRI last week and still one millimeter growth from July 2010  MRI. Now it is at .06x.04
Time to do something and I'm learning more and more about the cyberkife treatment. We have this new option here in Ottawa and the doctors there are fantastic! Of course I'm a bit surprise, depress, frustrate by this rapid growth but I'm getting better at letting know people of my emotion and what I'm feeling... It is also a bit better to talk to you guys as you know what I'm feeling. I gave 2 years to this tumor, worrying about it, being obsess about it  and all the other phases I have been through. It is time to gain control and take action. Sorry if I sound a bit all over the place with this post! I just had to get it out .

[Jim Scott]

Hi, Valarie ~

No need to apologize for needing to vent a bit.  As I like to ask: if not here, where? 

I'm glad to learn that you're moving toward a treatment decision for your (unfortunately) growing AN.  Cyberknife is usually very effective, should you chose that option.  I have to note that your stated frustrations with 'watch-and-wait' (observation) highlight the difficulty many AN patients have with that option, which often seems good in the beginning but for some, can be exhausting and even demoralizing.  However, as you near a firm treatment decision, those days of frustration will soon recede into the past.  I wish you well with your decision. 

Jim

[Mickey]

Hi Valerie! Its very understandable what you have been going thru. Your very young and I agree with whatever you decide to do. You have taken your time to investigate and do your homework. Therefore I think your headed for the best outcome with so much of a great future ahead of you. All the best!, Mickey P.S. Big difference on what we do with AN depends on how old we are.