A couple of questions while on wait and watch...

[chloes mema]

I was put on wait and watch yesterday with an appointment in September 2012 for my second MRI.

So my questions are:

1) Does one seek out other doctors and other opinions in these next nine months or just sit back and act like it doesn't exist?  My initial reaction was to ignore it until next September; however, I just finished reading numerous postings / answers and as usual have come away more confused.  At this point I don't think I would ever opt for surgery.
2)  Send my information to HEI even though they apparently only recommend surgery?
3) What “type” of doctor do you seek out for CK?  I'm currently going to a neurosurgeon, so do I consult other neurosurgeons or a radiologist?   

This is all relatively new to me since I was first diagnosed October 2011 with a 10 X 5 mm AN  (looks like an almond to me on the MRI).  Other than tinnitus and some “wonkieheadedness” and lack of hearing I have no other symptoms so I suppose that is why my doctor choose to take the W&W approach.

I'm in the Tampa Florida area if anyone can recommend any doctors.  Thanks.

Karen       

[Jim Scott]

Hi, Karen ~

If you wish a 'second opinion' about your AN you should find and contact another neurosurgeon seeking an evaluation and consult.  HEI does that and they do perform some radiation procedures on AN patients, even though they are better-known for their surgery successes.  However, if you have no intention of opting for removal surgery then seek out a radiation oncologist and make an appointment for a consult, explaining that you have an MRI scan and want to find out what the radiation oncologist physician recommends.  Of course, if you are comfortable with 'watch-and-wait' you can simply let this go until your next scheduled MRI in September.  If not, start seeking out radiation oncologists in your area.  I live in Connecticut and can't offer any suggestions for doctors in and around Tampa but we have members living in Florida that, I'm sure, will be happy to make some recommendations.  Just watch this thread. 

Jim

[chloes mema]

Thanks, Jim I can always count on you for an answer.   

Well, before the original post of this thread I contacted the rep for the local Sarasota Support Group and told Dave I would be attending this months meeting. 

Also, I received an email announcing the Florida Brain Tumor Association and Moffitt Cancer are giving an all day conference in two weeks at USF so I spoke with a rep from FBTA who encouraged me to attend so I signed up.  She said to bring my MRI and any other medical info I have about my AN to the conference because they will have consultations etc.  She encouraged me to talk to doctors regarding GK & CK.  So I'm encouraged by that.

I did try to do some searches on the internet but wasn't sure who / what to look for as far as radiation went.  So now I know to go look for a radiation oncologist.  Thanks.  I just don't think I want to get slammed in October with a "due or die" ultimatum, if you know what I mean. 

I guess I want either for someone to say, "you will have this procedure and it will fix everything" or I just want to ignore it and hope it will go away.  I don't do well under stress and I am fully aware that my situation is nothing compared to most on these forms.

Karen

[JAndrews]

I live in Florida also. Univ. of Florida ( I think the docs name is William Friedman, bad bedside manner) does radiation and has been doing it for many years and has alot of experience. I am not sure how many surgeons there are in Florida that specialize in this surgery. I did consult with Univ. of Miami but did not feel comfortable having it done there. I ended up going to HEI after multiple consults. I would definitely get another opinion..it can't hurt. Having mulitple opinions made me feel more confident when it was time to make the final decision.

[chloes mema]

JAndrews, thank you for the info.  I've read that Friedman has horrid bedside manners so I hadn't gone in that direction but I do need to start looking around because September will be here before I know it. 

Do you care to share why you did not feel comfortable with the Univ. of Miami?

I plan on sending my info to HEI next week to get their opinion; have read nothing but good things about them.

Karen

[JAndrews]

The Univ of Miami surgeons ( there were 2)one neurotoligist and neurosurgeon, I can't remember their names but if I heard or read the names again I would remember:) told me they would try to get about 95% of the tumor out. The office of the neurosurgeon was disorganized, I would never get a call back until I had called atleast 3 times. I was very concerned that after surgery no one would return my call. I was not impressed....After speaking to Dr. Brackmann who told me he had no doubt they would get it all of the tumor out and the confidence in his voice..my decision was made. And they have an excellent reputation. The first words I remember him saying to me when I woke up in the ICU...Dr. Brackmann stated "We got it all". and the MRI 2 1/2 yrs later...well its clear. House was also very organized, always returned my calls and Dr. Brackmann has always responded to my emails. That to me is the only kind of physician getting near my brain:)

[Tumbleweed]

So my questions are:

1) Does one seek out other doctors and other opinions in these next nine months or just sit back and act like it doesn't exist?  My initial reaction was to ignore it until next September; however, I just finished reading numerous postings / answers and as usual have come away more confused.  At this point I don't think I would ever opt for surgery.
2)  Send my information to HEI even though they apparently only recommend surgery?
3) What “type” of doctor do you seek out for CK?  I'm currently going to a neurosurgeon, so do I consult other neurosurgeons or a radiologist?   

This is all relatively new to me since I was first diagnosed October 2011 with a 10 X 5 mm AN  (looks like an almond to me on the MRI).  Other than tinnitus and some “wonkieheadedness” and lack of hearing I have no other symptoms so I suppose that is why my doctor choose to take the W&W approach.

I'm in the Tampa Florida area if anyone can recommend any doctors.  Thanks.

Karen     

Karen, you should definitely get other opinions while you have the luxury of not having to make a fast decision. The more opinions you get -- from doctors who practice different types of treatment -- the more your gut will lead you in the right direction.

Your doctor most likely recommended watchful waiting for you because you have only had one MRI to date. Until you have had two MRIs (at least six months apart from one another), you can't tell whether the tumor is growing or not. Your first MRI establishes a baseline, the second one shows a change (if any) in size. Some small ANs don't grow at all over a 20-year period, requiring no treatment, although this is uncommon.

Even if you have ruled out surgery, you should definitely send your info to HEI for their free evaluation. Gather as many opinions as is possible. HEI will offer you a valuable opinion, as they are leading experts in neurosurgery. You might read through their evaluation once and feel their recommendation is not right for you, but at least you will have heard their expert opinion. Knowledge is power.

Email Dr. Steven D. Chang (esteemed doctor at Stanford University Medical Center) at sdchang@stanford.edu and ask him if he would review your MRI and other test results for free; he routinely offers this service, even to people who are not his patients. Dr. Chang has probably treated more AN patients with CyberKnife radiation (CK) than any other doctor on the planet, but he is also a neurosurgeon, so he will give you an unbiased opinion as to whether he thinks your best treatment option is CK or cutting the tumor out. Dr. Chang is my doctor, and I can't say enough good things about him. He -- and CK -- gave me my life back. Like Dr. Derald E. Brackmann at HEI, Dr. Chang is extremely dedicated and responsive to his patients and will respond to those who aren't his patients. He eats, drinks and breathes public service toward those with brain tumors.

Best wishes,
TW

[chloes mema]

Thank you both for helpful info.

JAndrews, that's interesting about Univ. of Miami doctors.  I'm currently seeing Dr. Bartels in Tampa, who comes very highly recommended and I like very much, but my gut feeling is IF he ever did a procedure heaven help me if I needed to get a hold of him.  I don't know if his office is disorganized or just very busy but for a person newly diagnosed with a brain tumor my first impression of his office has not been good.  Canceled appointments, when you call most of the time you get sent to VM, call backs are either nonexistent or so far after the "crisis" that they might as well not have called.  Before I let Dr. Bartels do anything I'd have to have a very frank talk with him.  I'm sure he's a great neuro-otologist but ....

TW, thank you for the encouraging words and information.  Other than HEI I hadn't thought about going out of my "comfort zone".  After reading some of the posts on the forum I was under the impression that whatever procedure you have done is better done closest to home. 

I know I need to come to terms with my AN and be aggressive in my search for a solution. 

Karen

[Tumbleweed]

Thank you both for helpful info.

I'm currently seeing Dr. Bartels in Tampa, who comes very highly recommended and I like very much, but my gut feeling is IF he ever did a procedure heaven help me if I needed to get a hold of him...
After reading some of the posts on the forum I was under the impression that whatever procedure you have done is better done closest to home. 
Karen

The first time I tried to reach Dr. Chang (to ask him if he would review my MRI and other test results for free), it was via email on New Years Eve 2008 (December 31, 2007). To my utter surprise, he emailed me back within two hours! On New Years Eve and before I was even his patient! He has been just as responsive ever since.

My feeling is just the opposite of yours regarding the benefits of having your treatment done close to home. In your case, you might have the best doctor in your area. I, on the other hand, had no doctors that were deeply experienced with CK, which I had decided was best for me. Once I decided on CK, I sought out the very best doctor and facility I could find, which IMO was/is Dr. Chang and Stanford.

You know the saying, "It's not brain surgery"? Well, this is brain surgery, whether resection or radiotherapy. It is highly complex and the stakes are very high. The doctor(s) and facility you choose to treat you will (not might, but will) have a major impact on your quality of life going forward for the rest of your life. Knowing that, I decided to put up with any inconvenience of having to travel out-of-state to Stanford for treatment by Dr. Chang.

Wherever you decide to go for treatment, choose the best doctor and facility you can find and afford. You will thank yourself over and over again as you lead a rich and fulfilling life of good health after your recovery.

You can always have your followup MRIs done in your local area post-treatment and send them to the doctor who treated you for his/her evaluation and recommendations. (At least this is true with Dr. Chang; ask the doctor you're considering for treatment if this is an option.)

Best wishes,
TW

[leapyrtwins]

Answer to question #1.  It all depends on how comfortable you are with the doctor you are seeing and his recommendations.  While the majority of AN patients consult with more than 1 doctor, I did not.  I knew the first time I met my neurotologist that he would be the one treating me.  He does both radiation (GK) and surgery, he was experienced and qualified, I liked him and felt very comfortable with him, and I had the utmost confidence that he would do a great job whichever treatment I chose.  If I would have felt any differently - or if my doc had only presented one treatment option (surgery or radiation) - I would have consulted with more docs; but I just didn't feel the need.

So, if you feel the need, definitely schedule a few more consults; if you don't feel the need, then don't.

As far as thinking you'll never opt for surgery, the first time I met my doc I said there was "no way" I'd be having surgery - and then I did.  I found that I was very closed minded until I became more educationed on my options.  So don't discount surgery until you've thoroughly investigated it.  You may ultimately decide that it's not right for you, but then again you might change your mind. 

My take on question #2.  HEI will say surgery.  It's what they do and it's a big business for them.  That said, it's a free opinion from a well-known place, so what do you have to lose?  Not much in life is free, so why not take advantage of it?

Question #3 - if you are interested in CK, the best guy to go to from everything I've heard is Dr. Chang @ Stanford. 

Just my two cents worth,

Jan 

[Tumbleweed]

As far as thinking you'll never opt for surgery, the first time I met my doc I said there was "no way" I'd be having surgery - and then I did.  I found that I was very closed minded until I became more educationed on my options. 
Jan

I went through the same process with radiation. I was initially dead-set against it, then warmed (no pun intended) to the idea after researching it further and weighing my risks.

This is exactly why you should get HEI's opinion, even though you're not open to having surgery at this time. Who knows, it might sway your opinion. As Jan said, it's free expert advice, so it makes no sense to pass it up.

I'm a big fan of CK, as it's been a nearly miraculous treatment for me. But Jan's advice is spot on; it's important to keep an open mind and gather all the information you need to make the decision that is right for you. If you don't, you might prematurely rule out the best treatment for lack of knowledge or getting expert opinions about it.

Best wishes in your journey.

TW

[jugee]

Hi Karen, my wife and I live in Leesburg. We are in W & W with a 14 X 5 X7 mm.  My wife (Jugee) is the parent, and I am the research guy.We saw Dr.Max B. Medeary in Orlando (on AN physicians site).  He has done about 200 AN surgeries.  He is a very confident surgeon, but I have never talked with anyone that had AN surgery with him.
How can we find about the seminar you are attending soon? 
How large is your AN?
Gary

[Jim Scott]

Hi Karen, my wife and I live in Leesburg. We are in W & W with a 14 X 5 X7 mm.  My wife (Jugee) is the parent, and I am the research guy.We saw Dr.Max B. Medeary in Orlando (on AN physicians site).  He has done about 200 AN surgeries.  He is a very confident surgeon, but I have never talked with anyone that had AN surgery with him.  How can we find about the seminar you are attending soon?  How large is your AN?

Gary ~

This link will take you to a web page that has all the details on the upcoming seminar Karen referenced.  http://www.prweb.com/releases/floridabraintumor/moffittcancercenter/prweb9071204.htm

Based on the information she gave in her original post, Karen's AN is 10.2 mm. 

I'm sure she'll be happy to respond to any other questions but I just saw your post and wanted to reply as soon as possible. I trust that Karen won't mind. 

Jim

[chloes mema]

Trust is spot on, Jim, I don't mind! 

Gary, glad Jim gave you the website since I'd be fumbling around trying to copy & paste emails etc.  Gary if you're interested in going to the conference if you register by January 16 it's $30 and after that it's $40 IF space is available.  It goes from 7:30am to 5:30pm includes breakfast, lunch, & afternoon snack.  If you go please try to find me and say hello.

The original comment on size was 10.2 x 4.5 mm but on my second visit the doc said 10 x 5 mm, then I finally figured out he was just rounding; duh!  Guess being retired for 11 months is getting to me.

Jan & TW thanks for the info.  I'm embarrassed to say that I just want to take the ostrich approach and hope it all goes away on its own.  Since I've never had any real medical problems and no surgeries both surgery and radiation scare me beyond belief.  (I don't even get shots)  I know I need to get over this.  I do plan to contact both HEI and Dr. Chang, thanks to the recommendations.

Karen

[Tumbleweed]

Since I've never had any real medical problems and no surgeries both surgery and radiation scare me beyond belief.  (I don't even get shots)  I know I need to get over this.  I do plan to contact both HEI and Dr. Chang, thanks to the recommendations.

Karen

Karen, it's totally understandable to be scared. I'd had two other minor surgeries prior to getting CK, and I was still petrified of the procedure. What helped me was making the decision to go on auto-pilot. I found that I was not getting any less scared as time went on, so I finally just decided to do what I logically felt I had to do (i.e., get CK treatments) and let myself feel whatever I was going to feel about it. So don't feel bad about being scared. I doubt that anyone on this forum was not scared going into treatment. It's not easy. But thank God there are at least effective treatments.

Best wishes,
TW