Struggling with Options

[Mooretis]

I am 35 years old and have a 2.1cm AN.  I have met with doctors for both treatment options, surgery and Cyber Knife.  I have no symptoms other than hearing loss in my left ear, but can still hear out of it.  (It just sounds like I am in a tunnel and really have to concentrate to understand sometimes).   No balance issues, no facial numbness, etc.

While I am grateful to only be affected by hearing loss, I think it is making my decision to have surgery or cyber knife more difficult. 

One the surgery side, I am certain to lose my hearing completely on the affected side, risk facial nerve as well as other complications.   On the cyberknife side, the main issues is long term effects of radiation.   My doctor basically said that they do not have any long term data to know the long term effects of the treatment and that they know that in some cases radiation indeed causes cancer (not necessarily from cyberknife).   My AN is compressing my brain stem, so there really is not way to avoid the brain stem getting some level of radiation.  While they agreed that cyberknife was an option, they could not alleviate my concerns for long term complications.  I have two young kids and want to make sure I am around for the long term, even if it means dealing with short term issues related to surgery.

Gregory Moore

[leapyrtwins]

Gregory -

fortunately, or unfortunately, deciding on a treatment option is perhaps the most difficult part of the AN journey.  Making it more difficult is the fact that no one but you can make that decision.  We are here to offer your our experience, our advice, and our opinions, but we can't decide for you.  AN treatment is a very personal decision.

While I don't have an easy answer for you, I can tell you that you basically have to do your research, weigh the pros and cons of each treatment, and then choose the option that is best for you.  The ANA was some wonderful literature that might help you make your decision, you may want to consider contacting them and requesting it.

I, too, had the choice of radiation or surgery and I chose surgery for various reasons.  I am very happy with my results - no facial nerve damage, no eye issues, but SSD (single sided deafness).  It was the right choice for me, but it was my choice - it's not everyone's.

Jan

[msmaggie]

Hi Gregory,

You have come to the right place.  Making a decision about treatment takes a lot of research on your part.  Don't be afraid to send your MRI to lots of different clinics to get some input.  There are lots of people here on the forum who can give you the reasons why they chose their treatments.  My tumor is just a little smaller than yours, and I wavered between radiation and surgery.  After most of the drs. I consulted said surgery, I set the date.
I think there is a cyberknife forum -the name might have changed.  Drs. are on the forum and you can email them for some advice or input.

Good luck with your search!  We all have been through what you are doing right now, including making sure our priorities are in the right place!

Priscilla

[sgerrard]

Hi Gregory,

Fun things, these ANs, don't you think? 

If you are considering Cyberknife, you should have a look at the CK patient forum: http://www.cyberknife.com/Forum.aspx. It is easy to sign up and post questions; Drs. Medbery and Spunberg seem happy to reply.

It is worth it to discuss radiation treatment with a radiation oncologist, rather than a surgeon. It is a different specialty, and talking with someone who is up on all the latest results will give you a better picture of what stereotactic radiation treatment might have in store for you - not cancer, for instance. Brainstem exposure may well be an issue, though. There are lots of discussions on various topics in the Radiation section of the forum.

Surgery may turn out to be the best choice for you - as Jan said, what you think matters the most. Where are you in the country, and who are your doctors? There are also lots of posts on various places and doctors for getting AN surgery. Getting several opinions is usually a good way to get the whole picture before you decide.

Welcome to the forum.

Steve

[bell]

Gregory,
I had a very difficult time  picking the procedure.  I am 45 with 2 kids, trying to figure out which is best is sooo hard.  Everyone has an option that will work the best for them.  I am having retrosigmoid on Fri.  We (husband and I) mostly me, decided that I want the invader out and not to hopefully have to deal with it again.  I am young and healthy, so I think the risk of major surgery was a good option, I do not want to question the outcome what if down the road.  Have someone close to you decide with you and weigh the pro's and con's.  Definitely do research.  The best of luck to you, Bell

[wendysig]

Hi Gregory and welcome -
As everyone before me has said, your choice of treatment, since you do have a choice, is the hardest part of this process.  This is a decision only you can make.  My husband chose not to try to influence me in my decision and although I would have appreciated his input, he was right, it was my choice to make.  I have two daughters, 14 and 12 and intend to be around a long, long time.  My advice is that you do lots of research, a good start is the pamphlets Jan suggested, but you will find lots of information on the internet also.  Of course, I think you will find this forum a wonderful source of information, compassion and empathy too.     I would also suggest that you seek as many medical opinions as you feel you need to feel comfortable with your choice.  Just make sure you make the choice you feel is right for you -- most people here will tell you their choice was based on a "gut" feeling of what was right for them, after doing their research and having their questions answered by others here and their doctors.

Wishing you the best of luck in making your decision,

Wendy


   

[calimama]

Hi Gregory...

I feel very much for you. I went through this process in the first half of this year and i would not wish it on anyone.

I had many similarities to you (similar sized AN but a little bigger, only reduced hearing and noise on the left side, brain stem compression). Other than the hearing issues, i was 100% and i really think that it made it harder to decide. How do you go from being "kinda perfect" to taking a bullet of one sort another.

I am a similar age to you (39) and have a little one (20months).

For me another concern was that i wanted to have another babe, asap, and this was a big part of my decision for surgery (i was told that i should probably wait 6-12 months after rads to start "trying"). I am still hopeful that this will happen for me, despite my advancing age!

I think meeting a surgeon who i hoped could get me through with little damage helped. I also had many people (family, hubbie, family doctor) who were in favour of surgery. I also had the brain stem compression and it just seemed like there was a lot of brain that would get radiation on the  margins, however small. I kind of wondered if i would spend the rest of my life wondering if the rads would come back to haunt me, even though i knew it was rare.

Anyway, both are risky in their own ways and no one can predict how it will go for you. Many people said through after the first few weeks of recovery.

I do have paralysis despite desparately hoping to avoid this. I have been told it should recover and i remain hopeful. I also had bad double vision which was a big challenge for many months, but has now totally recovered. Thank god for that.

So it has not been an easy road, but I never regretted my decision (even with the challenges) and am grateful that i managed to dodge some of the other nasties that can come with surgery. I feel 100% and am happy. As for the facial issues, I like to think that i have a 'condition' that gets a little better everyday, which in the grand scheme of things is not so bad (and much better than something that gets a little worse everyday)! A good attitude goes a long way!!

The support of my family (hubbie and mom in particular) and friends has been unwavering.

I am grateful everyday.

Good luck.
Trish

[MAlegant]

Hi Gregory,
I chose surgery over radiation because of the suspicious nature of the center of my tumor and the size.  It turned out to be a good choice for me because what was inside the tumor was my acoustic and facial nerves.  I don't think radiating those nerves would have been a good thing.  My tumor was also a bit too large for radiation and once they got it out, it was even bigger than they thought.  I have not regretted my decision though I'm dealing with side effects.  They did save my hearing.
Good luck with your research, I wish you well.
Best,
Marci

[Jim Scott]

Hi, Gregory:

I think it's safe to say that we've definitely established that surgery or radiation is your decision to make.  We can offer our individual experience with each and suggest resources for research, as Jan did, but ultimately, you'll have to make a treatment decision and you'll have to live with the possible consequences of that decision, which is why its so crucial.  The frustrating thing is that there simply are no guarantees with these AN buggers.  Some surgery patients do just fine, others have a very long road back to normalcy.  Same with some who choose radiation.  Neither is a slam-dunk sure thing.  If one were, we would all go that route.  We'll give you information, personal advice (when requested) and fully support your decision...the one only you can make.  I wish you wisdom and hope that you'll get through this difficult process with the best possible outcome.  Remember, here you have friends that really understand what you're going through, care what happens and want to help.   Make this site and the forums a resource.  I look forward to seeing more of your posts in the days and weeks ahead.

Jim

[Nancy Drew]

Hi Gregory,

Sorry about your AN, and the decision process really is hard....STINKS !  Just in case GK falls into the picture for you, I just wanted to pass on that the head frame wasn't really that bad.  I know a lot of people have concerns about the head frame, but I actually found it rather fascinating.....maybe I'm weird   Just thought I would add my two cents on this one.  Also, as everyone has said already,  RESEARCH and find a doctor you feel comfortable with.  Best wishes as you continue on with your journey.

Nancy

[fbarbera]

Gregory,

It might be helpful for you to consult with neurosurgeons who specialize in radiation to get a better sense of the risks of radiation in your particular case.  When I underwent CK, the risk of malignancy was a non-factor.  And while CK specifically is only a decade old, radiation (GK) generally has been in use for ANs for several decades now, so there is a fairly long track record out there.   

I was at the same kind of impasse when choosing between surgery and radiotherapy.  For me, the way forward was to speak with multiple doctors and patients and consult resources until I was satisfied with my choice.   I describe my decision making process in more detail in my website below, if you're interested.

Best of luck to you,

Francesco

[Mooretis]

I have to say this forum is incredible.  While I have had wonderful support from my family and friends, I always had that little voice that said "but they really do not understand what I am going through both emotionally as well as physically".   This group understands!   Thank you all for your comments, and pointing me to additional resources to research the issue.

I have now booked surgery for later this year, but have not ultimately made a final decision.   I analyze things for a living and while the data points me one direction, my gut points me another.   I have spoken with doctors specializing in both surgery and CK.  I was fortunate that Kansas City had a hospital that performed CK treatments and did not have to travel far.  The CK doctor (Dr. Coffman @ Menorah in Overland Park, KS) was incredible and I would highly recommend him to anyone in the KC area facing the same decision.   He was more concerned with making sure that he walked me through everything and answered all of my questions than pushing CK on me.  He even took my case to a conference (with my permission) to discuss with his colleagues and provided me his personal cell phone number should I have additional questions.   For a minute, I was questioning if he was really a doctor.   

I am leaning towards surgery because I want to be done with it  (as much as possible anyway).   I have a very active mind and these last few months have been rough just trying to do anything to keep my mind off of it.  But with that said, I will continue my research.  I want to make sure that my decision is a fully informed decision.

For those who have posted, thank you again.   I only hope I can do the same for others down the road.

Gregory

[leapyrtwins]

Gregory -

we do know exactly what you are going through 

I wouldn't say I analyze things for a living, but I'm an accountant so I do my fair share of analyzing.  However, I went with my gut when making my treatment decision and I recommend that others do the same.  At some point you'll just know what is right for you; same goes for choosing your doctor(s).  You need to have faith and confidence in what you are doing and who is doing it.  After that things get a little easier.

Personality-wise I'm a very black & white person - not a lot of gray in my thinking.  One of the reasons I chose surgery is that, like you, I wanted "to be done with it" and get on with my life.  I also wanted to know up-front (as in immediately post op) the issues I would be facing in my recovery.  Call me a control freak - yes, it's true - but this part of my reasoning worked for me.

Continuing your research is a good idea.  Eventually you'll figure out what will work for you; you're on the right path.

Jan

[RosemaryL]

Gregory:

This is a tough decision.  Being an engineer, I find it helps me when I can use some kind of a decision metric.  Here is a simple risk assessment metric:  total risk is equal to the product of the likelihood of the bad outcome occurring times how bad it will be times how hard it will be to fix. 

The bad outcomes for surgery might be SSD, facial nerve damage, scalp tingling - you get to make this list.  Being a geek, I have to make a table - hope it comes out as readable.

Bad Outcome    How Likely    How Bad              Fix Difficulty     Outcome Risk
      SSD              5              3 (nuisance)         3 (aids)                 45
      Facial           2              8  (fairly bad)       2 (most heal)          32
      Scalp            9              1 (very minor)      1 (will heal)            9                               

I use a scale of 1-10 for everything.  And I just made up the numbers - you get to make your own assessment, based on what your learn from various sources and how much the various outcomes would bother you.  Remember that, with this approach, the worst case outcome risk is 1000 - so a 45 is not too bad and a 9 is trivial.

You need to make a similar list for radiation, but I don't know what the issues are.  Then just sit back and look at your data - it will tell you how you feel about all the issues.    Hope this helps a little in making a tough decision.

Just remember, once you've made the decision, think only positive thoughts about the real outcome.

Rosemary

[sgerrard]

I analyze things for a living and while the data points me one direction, my gut points me another.   

I think in the end, most of us go with the gut. If you need to rationalize that, just figure that your gut is telling you what the data really means. Many of us also found that making the decision was the hardest part; the rest was just letting it happen and finding out "what sort of chocolates you got from the box."

Is Dr. Rosenberg still at Menorah in KS? He was on the old version of the Cyberknife forum, so I'm just curious. It doesn't surprise me that you found it a good place.

Steve