When Watch and Wait is over...

[crivers]

My name is Cayce, this is my first post here.
I joined in July after after being diagnosed with an AN, and have spent hours on the forum. What a wonderful group of folks here.

I have a question - for those of you have had treatment after a W&W period, how did know it was time to get treatment?

I just had my 2nd MRI and AN has grown quite a bit - from 6 x 4 x 4 mm to 8 x 5 x 5. That is faster growth than my doc here told me was "normal" (whatever that is). I can see that people here have had treatment for ANs of this size - although many have had much larger ones.

My fear is of the unknown - what if this thing continues to grow at 4mm per year (or more) and does more damage than it already has? I have "useful" hearing - seems to me about 50% loss in AN side, I have serious tinnitus (although some days I forget I have it, which is very nice). I don't have any facial numbness or issues and no balance or vertigo issues.

There is a big part of me that wants to go and get it treated before any further damage can occur - how do I know it is the right time?

A complicating factor is that I'm in AUS at the moment on a work assignment. Seems most docs here are very anti radio therapy (in fact, only a couple of facilities in the country with the technology - and I doubt they would have 5% of the experience as large institutes in the US). I am not keen to have surgery so I am looking at CK. I have emailed Dr Chang at Stanford and will be flying back to the US in a few weeks to meet with him and a center in Denver (hometown) to try and gain some comfort with one of them for when the day comes...

Questions:
1. Any experience with Dr. Chang at Stanford? Please share.
2. Any one with experience with Rocky Mountain CyberKnife in Boulder?
3. How will I know the day has come to move toward treatment?

I would be really upset with myself if I resisted treatment (in hope that the AN would stop growing), only to start experiencing more severe and unpleasant symptoms.

Thanks for listening, and thanks for taking me into your club.

Cayce

[ppearl214]

Hi Cayce and welcome.

Oh, I know of MANY that were treated at Stanford, including "Mark", "Steve Gerrard" (sgerrard), etc.  Mark is now 8 yrs post CK for his AN, which, if my old age memory serves me right, was over 2cm.  If you go to the forum "home page" (listing all the subforums) and do a "search" option for Mark, you will see many of his posts, updates, insight and experience with his AN and Stanford.

You can also do a "search" for Rocky Mt as there have been discussions here as well.

Now, for AUS, our dear friend, Laz, had surgery and recent radiation in AUS.... so, searching his story here could be of help as well.

As to your question#3...... your gut will  guide you.  We tout here, as you may have seen, about leaving no stone unturned in doing your homework. I was in your same shoes and the homework at time became overwhelming.  Once you do your homework, your gut will let you know what will work best for you and your particular situation.

Now, I don't go posting this around here.... but, will share this.  It's always great to meet another that has already been through certain treatment options (regardless of treatment). Now, my AN was just about same size as your's. I did a recent video re: my situation and CK.  If you want to see it and how I'm doing, it may be worth a peek, but it mostly talks about how do handle the "research" stage of investigating what treatment options.


http://www.youtube.com/watch?v=GJJh3-j8eN4

there are also other videos online/on the internet that may be of value... many on YouTube, worth researching.

Not sure if this helps, but extending a "welcome" to you and I'm glad you found us. As you can see, we are certainly here to help.

Phyl

[davjack]

Ultimately the decision is yours. I think I'm going to go ahead and have the treatment if mine gets bigger. I'm not going to wait.

Haven't had experience with Dr. Chang but seems like anything I've read on the forum about him has been positive.
DJ

[Jim Scott]

Hello Cayce - and welcome to the ANA website's Discussion Forums, even though you indicated that you've been 'lurking' here for some months.  I'm pleased to learn that you've gained some knowledge from reading the posts and have a good opinion of our members.  I happen to agree with your assessment! 

I'm glad that my fellow moderator, Phyl answered your questions because I was never in a 'Watch-and-Wait' situation and don't have her depth of knowledge regarding Dr. Chang and the radiation program at Stanford.  I just wanted to offer you my welcome and thanks for posting.  As Phyl stated, you'll know when to move ahead with treating your AN.  Your instincts will kick in and the information from the research that you'll have accumulated will help you to realize when the time is right to act.  That could be quite soon - or not.  Believe me, you'll know. 

Jim

[crivers]

Thanks for the quick replies, I knew there would be some based on my reviews.

You have all confirmed what I knew all along, and that is that it is up to me as to when. I think that time is soon.
I am not dealing with the unknown very well, the initial news caused disabling headaches due to anxiety and stress (3 not so great weeks) and I was lucky to catch myself before depression grabbed me. All of it seemed to lift when my doc let me know that the AN was only small and we'd watch and wait. No emergency, no alarm bells...I remember leaving there 50 lbs lighter.

Just got out of my 2nd scan, seems like AN grew 30% and I have that same feeling again. I can not function normally with this stress and anxiety, so I'm looking for the next bit of news that will lift that weight, and unfortunately, it seems that I need to have a plan. I have just scheduled appt with Dr. Chang and will do so with Rocky Mt. soon.

Perhaps finding comfort in a doctor or a team and knowing there is a plan will eliminate the headache, the lump in the throat, and the racing of my mind which prevents me from performing in the real world.

I am disappointed that I am not handling it better, and unfortunately, that just exacerbates the issues. I see many of you on here with unbelievable spirits and strength and it is inspirational. I'll get there...

Thanks again.

[ppearl214]

Cayce

Please remember one thing... you are certainly entitled to your emotions as they are your's and no one can deny them from you... as this can be devistating to many.... but, also keep in mind... you have us to help you out along the way. You posted here, thus, you are stuck with us now!

Phyl

[suboo73]

My name is Cayce, this is my first post here.
------------
I joined in July after after being diagnosed with an AN, and have spent hours on the forum. What a wonderful group of folks here.

I have a question - for those of you have had treatment after a W&W period, how did know it was time to get treatment?

There is a big part of me that wants to go and get it treated before any further damage can occur - how do I know it is the right time?

I would be really upset with myself if I resisted treatment (in hope that the AN would stop growing), only to start experiencing more severe and unpleasant symptoms.

Thanks for listening, and thanks for taking me into your club.

Cayce

Hi Cayce!

Welcome to the Forum - but so sorry you have discovered you have an AN. 
I am here with my sister and we are both currently in W & W.
We occasionally have discussion on all the questions you have asked - do we wait, do we have treatment - when is the time right - what kind of treatment?
My particular ENT suggests i 'do something' if i reach a certain size (1.5 cm i think.)
Well - here i sit since Oct. 2008 and after maybe 12+ years misdiagnosed, and wonder what to do next!
In fact, at my last ENT visit, the resident was making his case that i should do surgery at my 'young' age - ok then!

Anyway, time passes and with no new symptoms, i continue in W & W.
I think i would have CK if i needed treatment right away - oh, they don't do that at the facility where my ENT is located.
NO PROBLEM - it is not his/their decision, it is mine.
Actually, one of the most helpful points was made by my husband, who said "I can not tell you what to do - it your body, your life - i will support you in whatever you decide." 
Initially, i really did NOT like this comment...but knowing i can decide when i want to, and how i want to, has given me some form of peace in the long run.

You too, will know what to do and when to do it.
In the meantime - we are here for you!
Keep asking your questions, doing your research.  Then take a break from it all - sometimes it is important to get away from it all!

My thoughts and prayers are with you.
Keep posting!
Take care,

Sue

PS My brother lives in the Denver area - that part of the US is beautiful!  Some good docs there, too.

[sgerrard]

Hi Cayce,

My experience with Dr. Chang at Stanford was very good. The place is always very busy, but the Cyberknife group there really know their stuff.

I acted on my AN pretty early. My hearing was continuing to go, and I wanted to intervene before it went completely. It is always a guess when to act, because no one can really tell if an AN is going to keep growing and cause more damage or just lie low and do nothing. At some point you just get the feeling that waiting is not going to work, and once you know that you are going to have treatment sooner or later, you might as well get it sooner.

The Boulder CK facility has a doctor or doctors that have trained at Stanford, and I think most CK facilities have doctors who are well trained on CK. For the treatment itself, most CK facilities should be fine. Having a doctor with a lot of experience is helpful if something unusual happens, though.

Best wishes on your journey.

Steve

[Denise S]

Welcome to the forum.   First, I'd like to ask how your AN got discovered??    As for me, I passed out & hit my head so off for a cat scan I went.  All attention was origianally focused on a different brain tumor that was bigger than the AN, but after 2 1/2 years that one was stable but the AN was growing.   Also, I had a bunch of tests done and one was the ABR (auditory brain response).   When going for follow up, my ABR had declined and my hearing did some in the AN side.  My AN was still on the small side.

My decision actually came down to the fact that I wasn't gonna have a job much longer (not a big deal because it was very, very part time and I'm mostly focused on my volunteer time at my kids school, etc.).    Plus, my insurance deductible was met and we were close to what I have called an out of pocket expense for the year.   That meant most of whatever else I had done that year would be covered 100% (except the above & beyond expenses).   Another was since the tumor was still smaller, but growing for sure and starting to effect hearing issues, hopefully earlier would give a better chance at preserving the hearing (no luck with that though).

The whole decision part is so mentally draining.   I actually ended up getting on a low dose anti-anxiety medicine that I took periodically to help calm my brain so I could sleep.   I also got to take it the night before my surgery (yep, I'm a bit of a worry wart too). 

Good luck with your decisions.

Denise

[crivers]

To all who have replied since my last post, thank you very much for your kind words and welcome to the club...

1. I do hear lots of good things about Dr. Chang, so I am happy to have my appt with him in the coming weeks.
2. I do find it interesting that I read on here that in Denver, the docs that trained for CK at Stanford, actually preferred and recommended GK for ANs, while CK for many other areas of the body, but for the head - GK; I wonder what led them to that thinking if in fact Dr. Chang actually performs many AN treatments with CK??? Anyone???

3. How did I find out? Well, it was pretty strange, here's the short story. (A longer episode at the end for anyone interested, don't feel bad if you're not...it's a bit long winded)

Quick version - my GP thought I had a sinus infection that was affecting my balance and my hearing (I had a plugged right ear and tinnitus). After about 1 month of trying his treatment with no impact, an ENT told me I had Miniere's disease - "for sure, 100%, we just needed one more test, as the symptoms are exactly the same as this little type of brain tumor, but it won't be that, we'll just get an MRI to confirm..."
Long story short - I don't have Miniere's disease after all...

Longer version:
March or April 09 - sitting at work, got a strange feeling of being dizzy and decided to go home (it was already past 6PM, so good riddance anyway)
Rode my bike home with slight difficulty, but nothing that seemed dangerous at the time...I came in my house and practically fell onto the dining room table.
All I wanted to do was sleep, but since I have a history of DVTs and a PE (Pulmonary Embolism - sp?) and am on blood thinners, coupled with a very concerned wife, I headed to the emergency room to ensure I hadn't just experienced a stroke or god knows what. (when you are on blood thinners, you tend to worry about all kinds of things that might cause internal bleeding without you knowing it...but I digress).

At the hospital - after a very short 6 hours (I can tend to be sarcastic, pardon me), NOTHING...Not one thing, but boy was I tired.

My GP did some simple tests and concluded I had a sinus infection that had thrown my balance off for a quick spell, gave me a steroid for it and off I went.
During this time I developed tinnitus and a full ear, causing me to have a hard time hearing in my right ear - just for the record, I have encountered this in the past...I can't say for sure the number of times or the duration of these episodes, but I have definitely experienced a loss of hearing in my right ear - only to have it return within 3 to 5 days - very strange.

After no success in ridding of symptoms after a month, I was referred to an ENT - looked over all my info, checked me out - looked in my ear with the largest apparatus (presumably a microscope) I had ever seen in a doctors office, he let me know that I had Miniere's disease. He told me about the symptoms and the treatment, etc. The fact that I have had these spells of hearing loss and sudden return had me too believing that I had Miniere's - just one quick MRI to confirm I didn't have this brain tumor with very similar symptoms - it'll be quick and painless and then we'll get on with our treatment plan for the Miniere's...uh, maybe not...

So now I have an AN - found in late June - initial issues experienced in late March - a very confusing and irritating 3 months searching for what my problem was. Then I knew, and a small part of me wished I was still looking.

Upon finding out, as I mentioned in an earlier post, I lost it, I could not function, I had the worst headaches I have ever felt in my life, I termed it my "Halo of Pain" and it stayed with me until I finally got an appointment with the Neurosurgeon who let me know that we'd just watch and wait. It lifted extremely fast and I was back to my old self, working, hanging out with my son at the beach, traveling with my family, just living...

Now my second scan and it has grown some 30% and my little buddy "Halo of Pain" is back, so I'm off to start coordinating my treatment plan with some doctors in the US in late March - I wish it could be sooner, but being in Australia for a work assignment forces a bit of planning, etc., so I'll have to start coping and keep it together for a few weeks until I get the time off to head home...

Told you it was a long story, hope it hasn't proved too much info for you.

[brucifer]

Hi Cayce,

After reading your posts on your watch-and-wait status, I was compelled to share my experience and offer some advice. My AN is 1.7mm x 1.5mm in size, and it has remained relatively the same size for several years. My ENT (Dr. Mattox) initially wanted me to proceed with skullbase surgery or GK several years ago, but after I discussed my preferences with him, he agreed to monitor my AN, and now he really respects the choice I made several years ago to watch and wait. I have an annual brain MRI, and my AN has shown no significant growth over the last four years. I say this to let you know that you most likely have a lot of time before your AN is large enough that you HAVE to make a decision on switching to a form of active treatment. Therefore, please don't panic; time is on your side. Unless your AN is directly in the IAC (not just the tail of your AN) or unless your symptoms are rapidly increasing to the point that they are no longer tolerable, you can remain in watch-and-wait mode if YOU choose to do so. One important thing to keep in mind is that MRI scans can be off by a couple of millimeters between scans. This is due to head position change, MRI slices taken at different angles and gapping distances, and differences in MRI scanners. In other words, your AN growth is within the range of error.

Please be careful to allow reason and research (correct information) to guide your decision making, not fear or misinformation. If you want CK, that's fine, but make sure it's YOUR choice. There is no rush for now, so you must be your own best advocate.

Concerning Dr. Steven Chang, he has a great reputation with CK and a great deal of successful experience treating AN patients. Even though I live in the Atlanta area, and we have CK available here, I would prefer for Dr. Chang to treat my AN with CK if the day ever came about that I needed CK. His résumé is very impressive. Besides, it would be a great excuse for me to visit my sister who lives in northern CA.  ;-)

Whatever, you decide to do, Cayce, here's wishing you the very best of of luck. God bless.

Bruce

[crivers]

Thanks Bruce,

Up until 1 week ago, I was happy to wait and watch forever - my issue is that if this thing is truly growing, I'm concerned my hearing will worsen, the AN will grow to start impacting my balance, etc. I know that it is small, I know that it may never be big enough to cause an emergency (brainstem issues, etc.), but I would be upset with myself if I knew this thing was growing and didn't tend to it before it created more adversity for me.

I am with you on the not rushing, and the making decisions myself for me. I just take in as much information as possible and try to process it.

My upcoming trip to the US to visit Dr. Chang is simply to set the plan up for when I do need to deal with this. I am happy for him to convince me that I need to wait 6 months for another scan and that I shouldn't be concerned about further damage, etc. Two things: 1. since I'm in AUS, I need to plan ahead as much as possible - I don't want to be scrambling without a plan if my conditions worsen; and 2. my plan has to include going back to the US, since I am not at all keen for surgery, and that is the big push here. As I mentioned, my head will settle down if I have a plan, as I still need to function in my job.

I do appreciate your thoughts and your comments and hope to watch this thing for as long as you, what do they say, hope for the best, but plan for the worst... I guess that fits me.

Cheers,

[ppearl214]

Bruce!!!!!!!!!!!!!!!!  I have missed you SOOOOOOOOOO much!      Good to "see" you and thanks for sharing this with us.  I hope you are doing well!   xo Phyl

Hi Cayce,

After reading your posts on your watch-and-wait status, I was compelled to share my experience and offer some advice. My AN is 1.7mm x 1.5mm in size, and it has remained relatively the same size for several years. My ENT (Dr. Mattox) initially wanted me to proceed with skullbase surgery or GK several years ago, but after I discussed my preferences with him, he agreed to monitor my AN, and now he really respects the choice I made several years ago to watch and wait. I have an annual brain MRI, and my AN has shown no significant growth over the last four years. I say this to let you know that you most likely have a lot of time before your AN is large enough that you HAVE to make a decision on switching to a form of active treatment. Therefore, please don't panic; time is on your side. Unless your AN is directly in the IAC (not just the tail of your AN) or unless your symptoms are rapidly increasing to the point that they are no longer tolerable, you can remain in watch-and-wait mode if YOU choose to do so. One important thing to keep in mind is that MRI scans can be off by a couple of millimeters between scans. This is due to head position change, MRI slices taken at different angles and gapping distances, and differences in MRI scanners. In other words, your AN growth is within the range of error.

Please be careful to allow reason and research (correct information) to guide your decision making, not fear or misinformation. If you want CK, that's fine, but make sure it's YOUR choice. There is no rush for now, so you must be your own best advocate.

Concerning Dr. Steven Chang, he has a great reputation with CK and a great deal of successful experience treating AN patients. Even though I live in the Atlanta area, and we have CK available here, I would prefer for Dr. Chang to treat my AN with CK if the day ever came about that I needed CK. His résumé is very impressive. Besides, it would be a great excuse for me to visit my sister who lives in northern CA.  ;-)

Whatever, you decide to do, Cayce, here's wishing you the very best of of luck. God bless.

Bruce

[brucifer]

Cayce,

You're welcome. Glad to help if I can.

One of the reasons I decided to watch and wait had to do with quality-of-life concerns. Any form of active treatment can bring about immediate side effects. I weighed the risks of treatment side effects with the risks associated with watching and waiting. For example, Dr. Mattox told me that my hearing on my AN side would continue to deteriorate over time even if I decided to watch and wait, and he was correct; it has done just that. However, if I had had skullbase surgery or radiotherapy, there was a greater risk that I would have immediately lost my hearing and sustained other permanent side effects from the treatment. So, in a sense, I feel that I have maintained a relatively high degree of quality of life as opposed to the potential treatment side effects I may have otherwise sustained. I'm sure glad I had the option to watch and wait. Unfortunately, many AN patients do not have that option once their AN is discovered. Of course, each AN patient has to weigh these risks for himself or herself, and it's good to see that you're doing so.

Also, concerning AN-related balance issues, most AN patients with balance issues have acquired those issues post-treatment. The reason for this is because since we have two balance nerves, one on each side of the brain, if one slowly dies due to an AN compressing it, the other balance nerve is able to slowly compensate for loss of balance-nerve functionality. However, when an AN patient loses one of his or her functional balance nerves due to surgery or radiotherapy, his or her other balance nerve has not had the ability (training time) to learn to compensate for the loss of the non-functioning balance nerve.

Anyway, I'm not going to lie to you, Cayce; it does take a lot of patience to be an AN watch-and-watch patient. It is not the choice for everyone, and I respect those patients who choose to actively treat their ANs. However, the reality is that once we are diagnosed with an AN, we become members of an exclusive club for life and should have our pre-treatment or post-treatment ANs monitored annually irregardless of what treatment or non-treatment option we choose. For example, even patients who have their ANs surgically removed would be wise to have an annual brain MRI to check for regrowth. There are numerous accounts (some even on this forum) where patients post-treatment were told by their ENT or neurosurgeon that their AN was gone for good, only to learn later that their AN had grown back. Therefore, in a sense we really never get to fully put our AN club membership behind us. It's the gift that keeps on giving.  ;-)

Another one of the reasons I decided to watch and wait is that there were some things I still wanted to do in life that I was concerned active AN treatment may have complicated. For example, I had a goal of getting a PhD, and I was diagnosed with my AN a year before I was planning to start my course of study. Watching and waiting has provided me with the opportunity to pursue my goal with a minimum of AN-related interference. Of course, if my AN had continued to grow significantly, or if I had acquired compromising AN-related symptoms, then I would have had to stop working on my PhD and deal with those pressing issues, but at least watching and waiting gave me a reasonable chance to begin and to continue my studies without post-treatment side effects complicating things. I feel fortunate that my chosen course of non-treatment worked out for me. Even though I chose this route, things could have turned out very differently.

I'm confident you're going to be in good hands with Dr. Chang, Cayce. Choosing a consultation with him was a great choice on your part. ;-)

Bruce

[brucifer]

Bruce!!!!!!!!!!!!!!!!  I have missed you SOOOOOOOOOO much!      Good to "see" you and thanks for sharing this with us.  I hope you are doing well!   xo Phyl

Hiya Phil,

Long time no see! I've missed you too! Hope the Cheeky Bloke of yours is also doing well. I still remember him devouring that monstrosity of a dessert during our lunch get-together. ;-)

I don't want to hijack Cayce's thread, so I'll keep this short. Lemme see here...well, since you heard from me last (2+ years ago), my AN has remained at the same size, same station, same location; I now have hypothyroidism; and, I had angioplasty last month and had a couple of coronary stents inserted (no heart attack or pain, thank God!). Anyway, I can deal with those things. On the good side of life, I have one more class meeting at Mercer this Thursday, and then I will be finished with all of my PhD coursework. All I will have left is completing a 50-hour internship and my dissertation, so I should be finished by December of this year. I am sooo ready for graduation!!

I see that you and the other mods are holding down the fort. I'll try to lurk and post every now and then.  TTYL...

Bruce