The "weight" of Watch & Wait

[suz]

I am so grateful to have finally tapped into this wonderful resource after over two years since my diagnosis. I am glad that I have not needed surgery yet, and that my AN has not changed. I am also grateful that my symptoms are not debilitating; and grateful that I have identified the cause of the many weird symptoms I have experienced over the past decade. All of this is great. But what I have wanted to address for two years is this: how many folks continue on with their lives exactly as they did pre-treatment once they are post-treatment? The one resource that I have used is the AN newsletter. Perhaps I am reading that newsletter with fear, but it seems like there are so many stories of folks who have had treatment and need to completely alter their lifestyles/careers, etc.  This forum has given me a different impression - that post-treatment can be just fine; a few months of adjustment and recovery; then back to business as usual. I am guessing that both scenarios are possible. But I am recently having a terrible time planning and setting-goals for the future.  For instance, my husband and I have contemplated a kitchen renovation for years, and now it seems more necessary to do it. But when I think about taking out a loan, I think "what if I can't work?" "what if I am disabled by this?" I get really stuck with this thought pattern. And believe me, I recognize that a kitchen renovation is really trivial compared to being there for my two wonderful sons; for my husband; and also being able to simply enjoy the activities I enjoy. I often feel like I appreciate the moment more because I know things can change, but on other days I feel this sense of impending doom the day I am told that surgery is necessary and who knows what will happen afterwards.....While I have many supportive friends and a husband with a great listening ear (no pun intended) I don't think they really understand what this is like to live with this. 

[EJTampa]

Hi Suz!
 
First, welcome to our group!  Two years of watch and wait with no growth is awesome news!  For some, treatment is never needed.
 
To answer your question...many people go back to their normal daily routine, whether they chose radiation or surgery.  There are also those that end up with post operative or post radiational complications that do force one to make major changes in the way they live their lives.  I wish we could make you a guarantee one way or another, but we can't.  I can say that some decisions you make can give you an edge in the right direction.
 
Probably the most important one is in your choice of surgeon, should you decide to go that route.  It is SO important to have surgery with a team that does many many of these surgeries each year.  I'm told it is less important when it comes to radiation, but I would still want someone that has extensive experience .
 
That's about all I can offer.  For now, I will pray that your AN remains stable and that you never have to get treatment.  But know that if you do end up needing treatment, there are lots of wonderful people here that will answer any questions you may have.
 
Ernie

[Jim Scott]

Greetings Suz - and welcome!

I have to applaud your 2-year observation period with no changes and offer the hope that this continues - but your concerns are valid.

As Ernie correctly stated, there simply is no template or hard-and-fast guarantee on surgical and/or radiation outcomes.  This tends to be the most exasperating part of the whole AN situation.  I believe the majority of post-op AN patients do just fine but this is major, serious surgery and it would be irresponsible of me (or a doctor) to pretend that you can go through it with no real effect on your lifestyle.  I'm a 'success story' but I was retired at the time of my diagnosis and I'm not positive that going back to a busy office setting would have been quite so easy, although I know I would have tried.  I have few AN-related deficits but I do experience occasional 'dry eye' (easily treatable with OTC drops) and I retain a small 'numb' spot on one side of my tongue.  My balance is very serviceable but not 100%, although it doesn't pose any real problems and I can navigate stairs without using the handrail and walking in the dark or low light isn't much of a challenge.  Of course, I'm totally deaf in my left ear (the 'AN side') but I've long since adjusted to that deficit, although BAHA devices are available and very effective, should I ever want one.   I have an approximate 10% difference in the sensitivity of my face on the 'AN side' but shaving is not a problem and my face is symmetrical.  Overall, I'm fine - and able to do everything I did prior to my onset of symptoms, diagnosis and surgery/radiation.  Well, to be honest, my stamina is a bit less than it once was, but I attribute most of that to (sigh) aging.   

Like Ernie (and everyone else reading this thread) I hope that your AN remains stable for the rest of your life but I also understand your fears, should it begin growing and require treatment.  Again, as much as I wish it were otherwise, there is no guarantee of a complication-free outcome to surgery or irradiation.  If you ever need to address your AN, I suggest that you seek out the most knowledgeable and experienced doctors and mentally prepare for any post-op contingency.  I agree that these fears that lurk in the back of your mind can be debilitating in themselves, but only if you allow them to be.  Try to focus on the positive, enjoy your life and try not to borrow trouble from tomorrow. 

Jim

[mk]

Hello Suz and welcome.

Many, if not all of us have faced the same question. Do I continue as usual, or is this a life altering event? I remember having the same thoughts pre and post-treatment. Will I be able to continue with my work as usual? Should I undertake more responsibilities? Will I be able to teach this course next year? I was discussing this with my dentist (who was the one who first suggested that I needed an MRI), and he told me "you know what? you have to take it a day at a time. Go on your daily life as usual - after all, nobody can be certain about the future - anyone could go out and get into a car accident. This doesn't stop us from making long term plans". My boss at work was very supportive as well, and encouraged me to go on with business as usual and "we will deal with things as they come". Well, this is what I did, and it has turned out pretty well. Actually, I would say that I had one of the most productive years professionally.

My good friend Trish (Calimama from this board) not only had a good surgical outcome, but she went on with her plans to get pregnant, and now she is expecting twins! I find this a trully inspirational story, having followed it from the beginning. Life does continue after AN treatment and this is what you can see overwhelmingly on this board.

As everyone else said in this thread, we hope that you can continue beeing on W&W indefinately. But if not, you have lots of options to deal with it, and plenty of time to do research and chose a good medical team.

Marianna

[suz]

Just wanted to give belated thanks to all who responed to my post (Marianna, Ernie, and Jim). So nice to know I am not on this Rollercoaster alone! I shared my worries with a wise friend recently, and she noted that I was really giving my AN "alot of power" in that I have almost set up my life commitments to be "ready" for if and when my AN (now nicknamed "Mini") grows. Responsible, yes. But in some ways I have not been fully living because I am waiting for doomsday. I know there will be ups and downs in the years ahead, but I am going to live in the present and appreciate my wellness. And I intend that "Mini" continues to live up to her name.
Suz

[Mickey]

Hi Suz! I`m right there with you going on 2 years W+W with no change 12x06mm. I`ve had minor symptoms for many, many years and really have just become a part of me (now 60). I stay very actice raquetball, golf, resistance training along with eating very healthy and many supplements. Recently I`ve noticed my migranes have diminished to very rare and actually feeling pretty good. Waiting for my next yearly mri in AUG. If all comes in well I`m going to go over what I believe may be helping me in detail besides what I`ve just said. Just trying to stay positive and keeping the faith! Best wishes, Mickey