question as to going from W&W to treatment....

[tenai98]

Ok, out of curiousity, at what point (size) did everyone go from Wait and Watch to treatment?.....Mine right now is 1.4cmX1.1cm..and I kinda decided that at 1.9cm its coming out no if and or buts!!!!!

JO

[cindyj]

Hey Jo,

I'm guessing you'll get quite a variety of answers on this...for me, I only W&W'd for six months.  I really had no intention of waiting at all when I was first diagnosed in Feb, but then decided I would at least wait until the 6-month MRI to see what it was doing.  In my case, it had grown a bit and changed shape, sort of.  As mine is already right on the brain stem, I decided I didn't want it to go any further, despite the fact that it is still relatively small.  So, out it will go...of course, I am still waiting a bit longer as I won't have surgery til November (I am participating in the Breast Cancer 3-Day - a 60 mile walk in late Oct).

Sounds like you've made a good plan for yourself!  Take care,

Cindy

[NL]

Hi Jo,

My AN was found at 1.6 cm. I decided to W&W to see if it was growing and at what rate, but gave myself a "cut-off" point of 2 cm before I'd take any action.

Seven months later it was at 1.9 cm, and I decided it was time! Three more months passed before my actual surgery date, so I'm not sure if it had another growth spurt, but it was peacefully evicted six weeks ago. 

Nancy

[Tumbleweed]

I only waited 6 months before deciding to get treated, for a couple reasons. First of all, I wanted to see if the darned thing was still growing, since I hadn't had a followup MRI since the initial one that led to my diagnosis. When the first followup MRI showed my tumor had grown about 50% in volume in only 5-1/2 months and had gone from 1.9 cm to 2.1 cm along the oblique transverse axis of measurement, I was pretty crushed to realize it was racing for the finish line. Had it stayed the same size, I would've been content to watch and wait indefinitely. But it was growing, and growing rapidly.

Still, I was somewhat unresolved about seeking treatment until reason #2 for seeking treatment was related to me by my doctor, Dr. Chang (Stanford U. Med. Cntr): it was now touching my brainstem, whereas the initial MRI showed it had been a couple millimeters away from the brainstem 5-1/2 months prior. That was it for me. I didn't want my brainstem to be any more in the way of the radiation beams directed at the tumor (by virtue of the tumor growing more and indenting the brainstem) than it already was at that point, so I decided not to wait. Also, although the next six months of watching and waiting wouldn't likely see the tumor grow to over 3 cm, there was a very remote possibility this could happen and I didn't want to take the chance I would be eliminated as a candidate for radiosurgery (CK in my case).

After a couple days of soul-searching and waffling, I knew what I had to do. From what I've read on this board, most people eventually do get a gut instinct of when to get treated and what form of treatment feels best for them. For me, continued growth and involvement with my brainstem were the final impetuses for me making the commitment to get treated.

I hope that helps,
Tumbleweed

[ppearl214]

Hey Jo,

when mine was found, it was 7mmx5mm.... after initial findings, we did another MRI at 6 mos later... found it to be 1cm. As it was growing fairly quickly, I decided (in my case) to use 1cm as the cut-off point to go for treatment. I took the 6 mos in between MRI's to do my research and based on my research, knew that 1cm was a good point for me to decide what to do  and achieve my personal goals in choosing my treatment. (my goal was hearing preservation).

Phyl

[sgerrard]

Ok, out of curiosity, at what point (size) did everyone go from Wait and Watch to treatment?.....

I think it is more common to stop waiting when there is confirmation of growth, rather that at a particular size. Once you know it is growing and you can't wait forever, it makes sense to go ahead and get treatment. Acting sooner rather than later will prevent further damage, and make any kind of treatment more likely successful.

Steve

[leapyrtwins]

Ditto on what Steve said.

Jan

[Nancy Drew]

Hi Jo,

My AN was found by accident, and I wasn't having any bothersome symptoms.  As you can see from my sig, I have been W&W since 2005.  AN didn't grow until 5/08.  It grew only slightly, but some symptoms came with the growth. Researched, saw lots of doctors, flip flopped many times, and then finally got to my "gut" feeling about what to do.  Was a hard decision because I have fairly good hearing.  But, in the long run I decided to go ahead with GK on Oct. 7th.  I think some would feel comfortable with continuing to W&W if they were in my shoes (all docs said it is a candidate for both-- W&W or treatment), but I'm not content with it being in there any more--now that it is growing and there are symptoms.  Just a personal decision to treat now, and I figure at some point in time I will have to get treatment anyway.  I'd rather go ahead now instead of waiting for things to get worse.  I am aware, however, that there will be risks, and I had to weigh the odds.  Best of luck in making your decision.  Only advice I can give:  make an informed decision.

Nancy

[Mickey]

I`d say there are a number of factors. 1st if it shows growth in 6mos. most important. Age, symptoms, location, original size, gut feelings,I guess. It`s really amazing how unique these AN s are. These are my opinions.. Hope they may help you a little, Mickey waitin and watchin

[Tumbleweed]

Acting sooner rather than later will prevent further damage, and make any kind of treatment more likely successful.

Steve

This is essentially what Dr. Chang told me in pre-consultation (before I decided to have treatment). When I asked him which posed a greater risk to my hearing, waiting or getting CyberKnife immediately (all types of radiosurgery -- some more than others -- poses some risk of hearing degradation or loss), Dr. Chang said waiting posed a greater risk to my hearing and that any damage would be irreversible.

It's a tough decision and I totally empathize with you. If it helps you at all, I was initially dead-set against getting radiation (or any other form of treatment other than naturopathic/holistic) but gradually realized my hand was being forced... and I now am totally at peace with having had CyberKnife treatment. So far, at least, it feels like I did the right thing (for me). I am much less fixated on the disease, knowing it's been treated. And despite a rocky first month post-CK, I actually now (2+ months post-CK) feel a little better than before I got treated.

All that said, you've got to go with your gut instinct. You'll know what to do and when.

Best wishes,
Tumbleweed