Surgery v. Radiation

[Evan]

Sorry to hear about your tumor, its recurrence and its size.  I did notice that you spoke to Dr. Sisti, who does both radiation and microsurgery at Columbia and I was glad to see him seriously consider both for your condition.  I do think that Dr. Sisti would focus more on radiation, but he is not going to go against conventional wisdom if he truly believes you need surgery.  I am sure the physicians at House will do a great job, and I am sure you will do fine yourself. 

Evan

[jimmy r]

Bruce

Please provide me with links to articles. I have scheduled my surgery but I will continue to do research and I am open minded about my decision. I just discovered this WEb Site which is wonderful. I have an article the HEI sent me from the American Journal of Otology ( authored by Brackmann, Hitselburger, of HEI, and a Joseph Robertson.) I will re-read the article. I have also read other articles on the internet about the risks of radiation for larger size tumors. My impression from Dr Shwartz at HEI was that he would recomend radiation for smaller tumors but felt mine was at the larger end of the safe range (3 cm being the largest size). Dr Sisti also said that for smaller tumors he would recomend radiation but that for my size he would recomend surgery. I would like to get other opinions. Thanks for your help.

Jimmy

[Evan]

Jimmy:

As a newbie I can empathize with you.  The decision as to surgery v. radiation will be difficult.  I think what you have read on here is true.....the doctors at HEI will almost always opt for Surgery v. radiation.  However during my telephone conversation with Dr. Adler at Stanford (the inventor of the Cyber Knife) he did tell me that he has received his first referrals from HEI...so perhaps they are starting to realize that for some tumors, radiation may be the best way to go.  I am going to see Sisti and from what I have heard, he will try to give good objective advice since he does both surgery and radiation.  If you have not consulted with Drs. Sen and Costantino at Roosevelt in New York you should do that also.  Finally, check out the literature published on the U. of Pitt Med Center web site re: a lot of statistics and surveys re: radiation.
Good Luck Jimmy.
Evan

[FlyersFan68]

Evan, In the end only you can tell you what to do. My AN was small so my surgery went smooth. Other than single sided deafness I am basically the same. It bothers me some from time to time like when I want to kick up the stereo but I'm protecting what I have. They had to sever the hearing nerve but at least they took the whole tumor. The effects of surgery are immediate and radiation over time. The thought of having a tumor drove me nuts!! I also had these daily reminders like "arrow" ear pain. Yes, it was like someone shot an arrow in my ear. Quick & Very Painful. That is gone too. Maybe it would have resolved over time and maybe I could have accepted the tumor presence for life but today I do have relief. Relief of ear pain and relief over tumor. I still have tinnitus and the single sided deafness which was due to the fact that my tumor arised from the inferior vestibular branch closer to the hearing nerve versus the superior vestibular branch which is closer to the facial nerve. My facial was and still is perfect. No eye problems or headaches but I'm not hear to offer you a treatment course. I am here to tell my story like so many others. As far as radiation goes there is one impressive study out of Pittsburgh with 10 year follow up. The other studies between 2-5 years are not as helpful because sometimes the effects of radiation take many years. Sometimes these tumors don't even grow 2-5 years just by waiting and watching. That too is an option! I was 35 when diagnosed so 30 years from now I'm just 65. I guess i needed immediate and permanant closure. I do wish the treatment of choice meets all your expectations! Best Of Luck!

[jimmy r]

I read all the links that Bruce sent. I am now going to dig deeper into the radiation option. The Dr from Pitt that gives the 30 minute video refers to small and medium tumors and I believe that at 2.8 cm, my tumor is at the high end of medium ( with 3cm being the beginning of large size). This is why this is such a tough decision for me. I have an article that Dr Brackmann sent me that I would like to email to anybody interested that explains why he is opposed to radiation.

EVAN - Can you provide phone numbers for Dr Sen and Constantino? I am very interested to hear how your appointment goes with Sisti. What is the size of your tumor?

[Derek]

Hi Bruce...

Congratulations and many thanks for the excellent post relevant to your tremendous research and consequential brilliant info which is an invaluable A-Z reference point for anyone contemplating stereotactic radiosurgery as their proposed treatment option.

Regards

Derek

[ceeceek]

Gotta throw my two cents in on this conversation..although I would highly recommend Radiosurgery aka, CK or GK over cutting anything ....if you are uncomfortable with the idea of radiation and the long term outcomes etc....there are other types of surgery available..even for ANs...so do not forget to look at allllll the types of treatments available...there are also many types of surgical approaches, newer and more effective means of removal with less intrusion and damage.....discuss the various types with your surgeon....and ask ask ask...how many of what type approaches has he/she done..and why that technique.....you will find that once a surgeon has mastered a particular type of approach they tend to stick with it..for obvious reasons..but there are many types of approaches available.....as well as the newer Endoscopic approach which due to type of growth..(no I am not an ANer...belong to the group anyway), CK was unfortunately not my best option....wish it was believe me...the stats on CK are overwhelming in its favor I believe, but it can be hard to research etc.....use the cyberknife research support group..great resource,,,I see Bruce has also sent you loads of info...you have to determine which works best for you...you might prefer GK..a one day treatment...etc....CK, you do several times...novalis you do 30days in a row, or you might prefer just to get it out of your head..just know that if you lean to surgery..there are different types, methods, approaches and skills used for this option too.
Good luck, keep us posted.
Ceeceek

[Evan]

Ceeceek:

I agree with you.  The decision can only be made by each one of us.  We also have to remember that whatever "we write" on these boards, are also our personal slant depending upon our inclination and what way we read things.  I have a friend, a doctor, who did some leg work for me.  He spoke to a good friend of his a neurosurgeon, who does not do this surgery but who said "I think the way they generally treat it nowadays is through radiation".  He then spoke to another friend, an ENT who said, "the only way to treat is correctly is through surgery".  So there you have it.  They both referred me to the people that I am already going to see, so they know the names in the field, but ENT's are trained in surgery, and neurosurgeons, at least these days can be trained in both. 

[ceeceek]

It is what appears to make it so typically confusing for all of us newbies.....I just wanted to make the point that there are different types of surgery just like there are differnt types of radiation treatment...seems like whenever someone on the board goes with surgery,,,they tend to just go with first type recommended..without realizing there are as many types of surgery as there are types of radiation.
Each treatment "of course" is based upon size location etc. which is part of what makes deciding difficult, as the stats are based on a very broad range.....
This site has really been a great resouce as well as the cyberknife support group. org.....the doctors answer all types of questions regarding tons of things which is really great to have an unbiased opinion....whether it be radiation, surgery, watch and wait.....etc.
The hardest part is determining alll that is available and then trying to determine which is going to be best for you..but I feel that of course, the more information one has, the better, informed, educated decision one can make. Good luck in all and keep us updated.
Ceeceek

[FlyersFan68]

Evan,
  Your off to a good start. This forum always gives newbies a full spectrum of facts and views. In the meantime, I have a few articles you may enjoy reading. Good Pros & Cons and helps to deeply understand treatments. I think you mentioned that you have good hearing so you can take your time. Good Luck

http://www.anseattle.org/refresradiosurg.html#anchor1529996

http://anseattle.org/prosconsframe.html

http://www.emedicine.com/ent/topic239.htm

this one i found yesterday if your deciding among GK/CK...

http://www1.wfubmc.edu/gammaknife/Gamma+Knife+vs+CyberKnife/

[kat]

Hi Evan

By now you must be suffering from AN info overload ! I know I did after my diagnosis and some days I just took a day off
from the AN research and went for a long walk . I also had very few symptoms only some hearing loss and tinnitus but otherwise I felt fine . Right from the beginning I knew that GK was my preferred choice (CK was not an option for me here in UK). At the age of 57 and looking forward to active semi retirement with lots of sailing I did not want to go through surgery and have the risk of balance problems which would have meant the end of our sailing trips . I also wanted to save what hearing I still had left which did give and still does give a fairly reasonable stereo . Also the fact that the procedure of GK is very quick with little recovery time was a factor . Apart from an episode of headpain 8 months after GK everything has been fine and my last MRI showed that the tumour was shrinking . So far no regrets about my choice of treatment . In the end only you can make the choice but lucky for you your AN is small enough giving you time to research all your options . Good luck !

Regards Kat

[ceeceek]

Hi there,
I noted your uplink re the GK vs CK, but could not help notice that the site is sponsered by a GK based facility...there are really really alot of conflicting sites about which is more accurate etc. If you go to a CK sponsered site, you will see quite different statistics. I went by the Doctors on the cyberknife support group site, as Dr. Medbery has done extensive treatment with both....one thing  I did not like about your reference site, is that its states CK is not as accurate, due to the type of headframe that is used, and that is not necesarily the case....head movement is not an issue with CK, as the machine and it is a computer guided machine, not a person programming it...that automatically adjust with head movement based upon live feed...
As I stated there are tons of sites that really conflict with information regarding the two treatments.
The best advice I got, was they both work, and it is really a matter of determining which treatment is more convenient for you......and the possiblity of fractionation for preservation of nerves,,which is still up for debate.

Good luck for all of you reading this trying to make up your mind..a lot of what will determine is where you live, whom your doctor is, whom and what you are comfortable with......the facts really really very depending on whom is sponsering the information.....and to boot, there is also novalis, peacock, fractionated gamma...not the same as GK...etc....it can really really be confusing, so sometimes it is a matter of what works for you financially, comfort wise etc. If you read the radiation section of this site, you will hear from patients whom have had lots of different types but primarily CK and or GK... that can give you a better idea of what will work best for each individual.

As for me, I like the idea of CK as if it doesnt work, you have more options afterward, but that is also a personal opinion based on equally conflicting facts....

Good luck
Ceeceek

[Mark]

Ceeceek addressed several of the fallacies of the CK vs. GK web site link offered by Flyersfan68, but I would add that this particular write up from Wake Forest was discussed many months ago on this forum. The archive format is a little cumbersome to work with now, but I'm sure someone can find the link for some of the responses if they're interested, primarily from Dr. Medbery who, as Ceeceek pointed out, works with both machines.

One of the key aspects of the previous discussion was the fact that the radiation oncologist at Wake Forest is the son of a Vice president at Elektra, the manufacturer of GK. The fact that this conflict of interest is not disclosed is it's own issue, but the list of inaccuracies in the article are nothing short of a travesty. There are a number of clinical studies, not manufacturers, that refute several of the claims made in that article.

Mark

[Evan]

When we think we know.....we don't.....

Last week I was diagnosed with an acoustic neuroma as per MRI which was read by a radiologist and then confirmed by an ENT.  Today I went for my first consult with a well known ENT and Neurosurgeon in New York.  After looking at it over and over again, and based upon my symptoms (some facial paralysis which is dissipating, and no hearing loss) they both said..."its not an acoustic neuroma".  Then, what is it?  Well, it could be a facial schwanoma, it could be nothing, or it could be an adenoid cystic carcinoma (the c word).  They immediately set me up (today) for a PET scan which would rule out the Cancer.  If turns out not to be the carcinoma, they may do nothing since they have no idea how long its been there, what it is doing, and if it is growing at all (if you remember, my symptoms started with an Ear infection, followed by fluid in my ear and then some facial paralysis).  This means I could have simply had Bells Palsy and this is just an incidental finding, or it could be much worse.

My point in all of this is:  No matter how much we discuss these things, no matter how much we read studies upon studies, we are not doctors.  Both Dr. Costantino and Sen were wonderful.  They did not alarm me, were deifinitely caring and did not talk down to me.  I was part of the discussion on an equal level with them. 

In addition, all of my preconceived notions of how they would react to radiation vs. surgery were just that.  Neither does the radiation, but said, without hesitation that if it were not a carcinoma and if it had to be treated, that they would have absolutely no problem with radiation.  They did suggest that if I were to receive radiation I should do it at U of Pitt under Lundsford (who did the huge GK 10 year study).  They also said that if either one of them needed microsurgery, they would go to Brackman at House.  They said that while many other doctorrs are good, there is no reason to go to Hopkins, Stanford, etc......  That may reflect some personal feelings on their part, but I felt they were simply stating facts as they "knew them".

So, in conclusion, if there is one at this time, all I want to impart to all of you (and I know I am new here and probably do not have any right to do so) is that while we should use each other as wonderful resources, while we should use our brains as wonderful resources, we should ultimately let the doctoring up to the doctors, and to try to remain calm, cool, and as objective as we can, until a professional gives us the final word.  Medicine is certainly not an exact science especiallly when it comes to tumors of the head and neck, but no matter how much we know, we still do not know as much as those to whom we are placing our health and lives.

I will continue to fill you in as I continue to find out more information. 

Evan

[ppearl214]

evan,

first, I'm glad to hear you do not have an AN and can only hope for a positive outcome for you.  Will keep my fingers crossed.

As for your comment:

..."we should ultimately let the doctoring up to the doctors"...

I have to respectfually disagree.  As one with pancreatic cancer as well as an AN AND Chiari 1 malformation, the first thing I have learned in my medical mistrials is that ... doctors are not gawds.  I must be the best, well informed patient as I can be. I actually taught my neurosurgeon (who cuts for a living) a few things about CK.... as I learned from her too about GK (which she did her internship).  IMO, we must continually learn from each other and that dr's are not infallible.  Just my 2 cents.

Please keep us updated on your progress.... and hope things turn out well.

Phyl