"Success Statisitics"

[CF]

Hey wanted to bounce some info off of you. Thank you again for your support and for this forum  .

I saw a Doctor this week and he recommended surgery for complete removal of my approx 1.5 cm vestibular schwannoma (VS). He explained why he recommended this over radiation, however he also firmly encouraged me (and gave me other Dr. references) to explore radiation treatment and suggested I need to be comfortable with my decision.

Nonetheless, he indicated that he felt given the size of my VS, my age, the location of the VS, my symptoms of balance loss (hearing loss was not even on my radar), that surgery would he his recommendation.

He indicated
- 95% chance of facial nerve preservation
- 50% chance of useful hearing preservation

The 50/50 seems like a reasonable and conservative estimate. But I wasn't expecting this 95% on the facial nerve, which seems very optimistic. I mean, I'll take all the optimism I can get .... but I want it tempered with a reality check. 

Any thoughts?

[Larry]

CF,

Need more detail on your AN - like size, position etc.

As for statistics, ask that same doctor what the mortality stats are for surgery compared to radiation treatment. Also ask him on re-growth stats. Oh and get him to qualify his comment about complete removal of the growth - they can't say that coz they can't be sure until they are in youir head - betcha he doesn't respond.

Anyway, based on my review of posters on this forum - (based solely on memory and no record keeping so keep that in mind) but radiation treatment seems to be far more successful than surgery as far as facial nerve preservation. Re hearing - absolutely no comparison - radiation wins hands down. Post treatment - again, radiation wins hands down.

Am i biased - absolutely (from my experience and also from the posts) but I'd be interested to see if anyone disputes my assumptions.

Laz

[Jim Scott]

CF ~

You've been privileged to find a doctor that, although he admittedly favors surgery, is sanguine with you pursuing the possibility of radiation treatment and is likely sincere and definitely accurate when he says you need to be comfortable with your treatment decision.  That is a statement we often make to the newly diagnosed and those struggling with a treatment decision.  We sometimes shorthand it to: 'go with your gut'. 

The percentages the doctor offered you on hearing preservation are likely accurate but always, an estimate or really, an 'educated guess'.  The percentages on avoiding facial paralysis seems a tad optimistic but not totally unreasonable, depending on the size and location of your AN.  I had a large AN, had it de-bulked then radiated and suffered no noticeable facial mobility or sensitivity.  It does happen and not all that infrequently. 

I respect Laz's enthusiasm for irradiation treatment but I would look closely into surgery, also.  There is no perfect treatment and both surgery and radiation carry inherent risks that cannot be avoided.  Continue to research and question doctors until you're confident on your ultimate choice of treatment (and doctor).   This is too important to decide on emotion, one or two doctor's recommendations or even the opinions of other AN patients posting advice on the internet. 

Jim

[Pooter]

I'm a bit skeptical of the stats you were given.  95% chance of facial nerve preservation?  That's BROAD statement.  Meaning, it could be that he says 95% chance it will be as it is now, 95% chance that it won't PERMANENTLY be damaged, or 95% chance that it won't have to be cut..  It's too vague of a statement to know what he really meant.

I suspect that the hearing preservation stat given is close to the same thing.  "Preservation" meaning SOME hearing is left (let along the fact that it's not USEFUL HEARING, "preservation" meaning what hearing you have now would be left or "preservation" meaning something else entirely.

With a 1.5cm AN, all options (based purely on size) are available to you..  Of course the SURGEON is going to prefer SURGERY.  And guess what, I bet the radiation oncologist will prefer radiation.  No surprise there.

Then, it comes down to what YOU feel comfortable with... Who you feel comfortable with.  Talk to some/all of the radiation doctors that he provided, but also do your own research and find some radiation people who specialize in treatment of AN's with CK, GK, etc...  You have the luxury of time..  Use it well in the decision-making process.

Regards,
Brian

[leapyrtwins]

CF -

I'm skeptical of these stats just like Pooter.

I obviously can't speak for all doctors, but I subscribe to the theory that docs who only do surgery are going to recommend surgery and docs who only do radiation are going to recommend radiation.  Which is why I chose a doctor who does both - and he told me in no uncertain terms that since we were discussing my treatment that the choice was mine; not his. 

There is no guarantee that you will fall into the statistical sample that these percentages are based on.  In other words, stats don't mean a whole lot when the person in question is you.   

My best advice is do your research, talk to as many qualified doctors as you feel you need to, find the doc (or the team of docs) you are most comfortable with and have the most confidence in, weigh the pros and cons of each treatment choice and go with your "gut". 

Making your treatment decision is probably one of the hardest parts of the AN Journey - and as Pooter points out, you have time on your side.  Don't rush into anything.

Jan

[CF]

Thanks, all, for your posts. Very much appreciate.

1. As far as size, it's1.5 cm, and it's located I gather in a very accessible place. No complicated entries at all .... right there. I sense great confidence in this doctor to get the bugger out because it was in a straightforward location.

2. I believe the 95% meant that there's a 95% chance that he can successfully preserve my facial nerve "state" as it is today. He mentioned that I might experience some initial loss, but that it would come back, and that there was a 95% chance (from his experience with patients) that he could successfully preserve it the way it is today

3. I asked him what complications he ever had doing surgery. He responded that 1 person got a brain infection (and treated it by draining the fluid), and 1 person's facial nerve function did not come back. He also has 200+ brain surgeries / 5 + years experience under his belt, however they were not all this one type of surgery. I got good vibes from him ..... more importantly, so did my wife  - she has a good knack for "seeing through" people and she grilled him pretty good with steady, firm, and piercing eye contact 

4. He explained that all he did was surgery, and hence he recommended I consult with 2 other surgeons that did both (and he gave me names), and that he had great respect for them, and that be believed they would have no bias one way or the other because they did both (unlike him).

5. My symptom is an increasing loss of balance. My hearing seems fine (some fullness feeling setting in in one ear). Radiation I gather from research (and from my visit with Dr) will not create any improvement to my balaance, may even make it worse (please NOOOOOO!  ), for some long period of time (12-18 mos). This is particular to my circumstance .... logically it makes no sense to me to go 18 mos with no improvement, however this is my circumstance only, not necessarily true for someone else (in fact probably not true for most people who have the slow growing, hearing impacting tumors ....vs the fast growing, balance debilitating tumors like I have. Man it really stinks feeling like this!!!)

6. He was clear I am not in a life and death situation: His priorities would be (1) successful surgery  in that I live to talk about it another day, (2) facial nerve preservation, and (3) hearing preservation. If I had to prioritize, that would be it.

7. I've done some research, and I really did not learn anything new from my visit other than that I have a fast growing VS. Typically these grow slow, and therefore the brain compensates for balance impediment, and the VS is typically looked into because of hearing loss. This is not the case for me. My VS is growing faster than my brain can adjust, hence I'm all wacked out ..... my hearing has never really been my issue, at least not yet because of the size?

8. I'm comfortable with the surgery, I'm not afraid to do it. Based on those "stats", it seems like a worthwhile gamble, I might even go as low as 50/50 on both. The probability of risk and the potential benefit of this option seem still like a worthy gamble than the higher probabilities associated with radiation treatment: MRI's for life, no near term vestibular benefit at least for a year, risk (even low) of tumor becoming malignant or growing back. Even if my hearing is 100% guaranteed ..... if I can't walk without stumbling for the next 12-18 mos, then what do I have to hope for? I'm willing to lose all my hearing ..... I want my balance back.

At this point I do feel the decision is now evolving more to a philosophical one, the information out there now in the internet is pretty consistent. I'm still looking, though, for a "balanced" (pardon the pun) perspective on all treatment options. I want to hear a good, strong case for radiation, given my circumstance. I don't think the mortality issue is my concern because I don't feel I'm going to die from the surgery (I understand it's a risk), not really worried about my hearing preservation, and I know radiation is the "safest" least invasive procedure. But I want my balance back in the most certain method possible. I really appreciate the the opposing point of view, and really want to hear it, so I can be "more" sure in my decision one way or the other.

Thanks again all.

[Pooter]

Sounds like a reasonable reason(s) for surgery to me. One question, how does he know it is fast growing?  Did you have multiple MRIs over a period of time that he used to compare the size in each?  I ask only because you can't tell how fast or slow it is growing based on a single, static MRI. At least not that I've heard.

Others with more radiation experience should jump in and add their $0.02 as well as the other doctors mentioned.

Regards,
Brian

[Mark]

I do not think balance will be a problem for you once the AN is removed ( surgery) or killed and stabilized ( radiosurgery). As you correctly noted, your current problems are most likely  the result of the ongoing adjustment of the balance nerve to pressures from the AN. Once things stabilize post treatment, I would suspect that your other balance components will begin to compensate.

Mark

[ghenier27]

Hi CF, we kinda had something in common. My tumor was 1.6 cmm by .07 in size on the left side. I choose surgery because of the factor of radation. What I concern the bottom line in radration was a couple of factors.
1) If I choose radation, the health cells around the tumor could turn cancerous. If that happens, that would be a death sentence.
2) I am 53, what if I needed radation for something eles in the future?
3) Was a personal one, my Dad has prostate cancer, he was talked into radation at the VA Hosptial in Richmond,Virginina. The hosptial over radated him by the mistake, it has turned his insides like tissue paper. Everytime he twist, bends over,etc he starts bleeding and has to be rushed to the hosptial . Where they take him into OR and have to stop the bleeding.
CF, I read the stories of the surgeries people had and I thought I owed to myself to atleast talk with the doctors who did the radation and the doctor who did the surgery. Once I met the surgerion, I knew if I was going to have surgery- I wanted him to do it. In the end, myself and Lawmama both had surgery by this same doctor. I should have been the poster child for this surgery. My tumor was on my facial nerve, the doctor had to pull the facial nerve more than he was comfortable with. But I have no facial damage. If you read my stuff posted on the board, you will see how well I did. Just 4 days after coming home, I was driving my car. The end of the first week, I was driving to the Food Loin, getting into one of those electric carts and doing my shopping. I now consider myself fully recovered. I even lifted my 125 pound disabled daughter after just 4 weeks post op. For me, my tumor is gone and I have no worries about it . Of course, everyone has their own reasons for the type of treatment they choose. I wish you luck in your decison, Debi

[leapyrtwins]

CF -

sounds like you've been doing your research  

My AN was fast growing - almost doubled from the time of my diagnosis to the time of my surgery approximately 6 weeks later - but I didn't have big balance problems.  I had fullness in my ear and diminished hearing and what I'd describe as "slight" balance problems.  We didn't realize I had rapid growth until the docs did the surgery and saw it for themselves.  

Like Mark, I think your balance will get better post treatment regardless of whether you have surgery or radiation; the body does compensate.  

In point #5, you mention that your hearing seems fine.  If compromised hearing isn't a factor, does that mean the doctor you saw would do mid-fossa as opposed to retrosigmoid or translab?

Jan

[mk]

1) If I choose radation, the health cells around the tumor could turn cancerous. If that happens, that would be a death sentence.
2) I am 53, what if I needed radation for something eles in the future?
3) Was a personal one, my Dad has prostate cancer, he was talked into radation at the VA Hosptial in Richmond,Virginina. The hosptial over radated him by the mistake, it has turned his insides like tissue paper. Everytime he twist, bends over,etc he starts bleeding and has to be rushed to the hosptial . Where they take him into OR and have to stop the bleeding.

There are a lot of perfectly valid reasons for not pursuing the radiosurgery route, but I just wanted to make a few points about the arguments above, to avoid misconceptions especially among newbies:
1) there are very few documented  cases in the literature of an AN turning malignant (actually out of the 6 that have been published, 3 had not  been radiated but removed surgically). There is a slightly higher chance of developing malignancy in surrounding tissue that has been exposed to radiation, that meets the criteria of secondary malignancy attributed to radiation, but it has not been proven that this is higher than the general population. One could argue that there are also risks of immediate death during any surgical procedure.
2 and 3). We are not talking about the "whole brain" radiation, or radiotherapy that is used in cancer patients. This is intended to affect all tissue surrounding the cancer, both cancerous and healthy, in an effort to kill as many as possible of the cancerous  cells. Radiosurgery is very focused and targeted towards the tumor cells only. Therefore it never has the adverse side effects of radiation treatment that you see in cancer patients.

Marianna

[FlyersFan68]

In my case surgery proved to be very positive. 1.2cm totally removed with perfect facial immediately post op. No headaches. I did have an awful stiff neck from time to time but a good heating pad worked like a charm. Don't really have them much anymore. Some off days. Balance is just fine. I was out last night at a bar for a christmas party and had no problems hearing others with just one hearing ear. Once in a while I do get down about not having the other. It's a weird "less than perfect" feeling I cannot quite explain but most of the time it doesn't even cross my mind. I also know that not everyone has good outcomes therefore I try really hard to refrain from recommending surgery to anyone in fear of negative outcomes. I'm just one "success" story but do know that there are good surgical outcomes. I think "find the answer within yourself" is the best advice for newbies. Also, really speak to your surgeon or oncologist letting them know all your hopes and concerns.

[CF]

Awesome posts, everyone! Thank you!!!

One question, how does he know it is fast growing?  Did you have multiple MRIs over a period of time that he used to compare the size in each?  I ask only because you can't tell how fast or slow it is growing based on a single, static MRI. At least not that I've heard.

I gather he is assuming fast growth based on the following line of reasoning. I did not have a 2nd MRI (I kinda want one for .... for Christmas!  :

a- Most "typical" tumors grow so slowly that balance is compensated for by the brain.

b- In these "typical growth" tumors, the patient does not even notice any balance issues. The patient typically experiences hearing loss and this is the typical trigger for the patient to seek medical help

c- However in my case, my trigger to seek medical help was a loss of balance. It started as "random" feelings of imbalance, over weeks / days, within the last year or so. I remember bringing it up with my PCP over a year ago, and all I got was a "hmmmm". Then one day I woke up, and it was with me all day, everyday, and hasn't left me since. I went back to my PCP, and the rest is history ..... here I am today!

d- I believe the Dr's theory is this, because I'm feeling imbalance, then it must mean my vestibular schwanomma is growing faster than my brains ability to compensate, hence he labeled it "fast growing" ..... as opposed to "slow growing" where I would not be expected to feel much imbalance due the gradual growth and the brain's ability to typically compensate as per b- above.

I have the perfect gift in mind that my insurance company could give me ....  , if they're reading this post! lol!!

[Pooter]

CF,

By your own words, you were having these issues "over a year ago"..  Isn't it conceivable that the tumor has been growing much longer and starting about "over a year ago" it started affecting the vestibular nerve and then here recently had progressed to the point that the vestibular nerve was more accutely "attacked"?  I follow the line of reasoning, but I still contend that comparitive MRIs taken months apart are really the only way to know if it's fast growing or not..  Leave alone the documented fact that some tumors have "growth spurts"..  So, the line of reasoning is that the tumor is slow growing, but in the last year took a "growth spurt" causing more issues with the vestibular nerve.  So, does that mean it's fast growing or just growing faster than normal right now?

I only question this because I don't want you to rush into a decision because you think it's fast growing when the reality may be very different than that..  Y'know?

Regards,
Brian

[Sue]

Hmmmmm, interesting thread.

Way back when,  sometime in the early 1990's I had two instances of a vertigo/dizzy spell.  For some odd reason, I really remember that as the room was spinning.  Neither episode lasted for very long, just hours, and I went on with my life.  I am sure that if it had continued and I'd gone to the doctor for tests, a baby AN would have been discovered.  But, my AN has been the slow growing variety, because the next symptom didn't flare up until Fall of 2004.  

Yeah, that whole "getting cancer" from radiation treatment sounds pretty scary, but that's not a particularly valid excuse anymore, at least not with the pin-point accuracy that these machines use now.  There are risks with anesthesia too.  There are risks with driving to the hospital. 

Whichever way you jump here, CF, I wish for a good outcome and a speedy recovery.  

Sue in Vancouver, USA