Did You Have Radiation or Surgery The Second Time Around And Why You Chose It?

[justafactoflife]

I had a regrowth of the AN on same side and I'm not sure what I want to do this time.  I'm still debating which way to go???  As for me, I'm leaning toward Micro-Surgery today and then tomorrow, CK / Stereotactic Radiation.  I feel like a yoyo, and I pressured to decide now, while it is still small in size to preserve any hearing at all.  I know it's risky either way I go, according to what I've read and experienced.

What bothers me about radiation is the fact that you won't know for sure the darn thing has stopped growing for up to 3 yrs according to my Dr.  If not, ....you may get to do the surgery anyway.  The worsed case scenario is radiation will cause scar tissue to form around the supposedly dying tumor and this could/will make surgery even more difficult to do later on.  The choice seemed pretty clearthe 1st time around because I didn't want that thing in my head.   Now,...I'm not so sure after going through surgery whether I want to do it again.  I'm in agony!!  Any one have to make this decision again?  Why did you choose your particular treatment?

[FlyersFan68]

I'm sure your post will draw many opinions and experiences. Her is my opinion. I had surgery for a tumor slightly larger than yours at around 1cm over two years ago. I did have pre surgery symptoms including speech discrim. hearing loss, ear pain etc. I wanted it out too and I'm glad I chose surgery as my first approach because I persoanlly feel that this eliminated the problem once and for all. I could be wrong but I am very optimistic today. After reading your post I asked myself what I would do if I had a regrowth one day. My gut feeling today and is just "an opinion" is to go with wait and watch or radiation. I am a strong believer of trying the opposite of what already failed. If I had radiation first then years later it failed the I'm pretty sure I would go with surgery.  Sadly, nobody really knows how they will turn out many years later. Same can be said for anything in life. We just do what we think is right at that time. I know of some people that had micro-surgery twice and are happy with that decision. If you feel that you may not be the right candidate to monitor the regrowth for many years well then maybe surgery is right. You're already well educated and dealt with all the hardships revolving around this tumor the first time so maybe you can deal with that potential stress of monitoring a radiated tumor for life. I think that if I was to go a second round with this tumor I would just accept the tumor is in my head and will be for life. I would probably make the "wait and watch" option be first since I am already deaf in that ear. If it kept growing I would just get it radiated (Cyberknife).  MY OPINION!  Again, I just feel if something failed once then maybe try the opposite. It's hard to say anything for sure since I am not in this exact situation. I do know that I would take the time and seek out the very best opinions including House regarding potential treatment courses.  Good Luck Pal ...

[Kathleen_Mc]

justafactoflife: Did you loose hearing, balance and facial nerve function the first time around? I did and that was what made me opt. to got through surgery again vs gamma knife, I wanted to know the thing was gone and didn't want the anxiety of the monitoring any longer (regrowth had already been monitored for over five years).  It was actually my anxiety over "being monitored", which stemed from having such a big one in the first place, that was the reason for the surgery being done already. There was no physical need for surgery yet but it had grown some over the five years of monitoring and I just wanted it over and done with.
Just think about what is best for you, surgery the second time around was a breeze for me, with already having lost the nerves in the area there was just the recovery from surgery (and comparably a short one) to deal with.
Kathleen

[justafactoflife]

justafactoflife: Did you loose hearing, balance and facial nerve function the first time around?

Kathleen_Mc
Yes,but minimal hearing loss.  I was told I had lost 35-40% and there was some facial nerve function loss  but my face came back to almost normal. My right eyelid stays closed if I get tired.  Fatigue and memory is a major problem too due to the retraction of the brain during surgery.  My balance was what I had effected the most.  To this day, I have a lot of trouble sometimes when walking, driving a car, standing still, and going down stairs.  I have a lot of ringing of the ear and more since the return of the tumor.  Second time around surgery will almost certainly be more risky for the surgeon who ever does it, but I think I'll be more selective this time and research every aspect as you did.  I too don't want to "wait and see" because of the mental stress and worry it would cause me.  I would rather deal with the side effects of surgery now, than radiation/surgery later.  I know it's a gamble no matter which way I choose, but input from those of you who've done this twice or more would be appreciated and help me decide my future

MY OPINION!  Again, I just feel if something failed once then maybe try the opposite.

FlyersFan68
Good advice and I at first thought the same thing.  My opinion is that "If it ain't broke, don't fix it", meaning that yes,...the surgeon 1st time said he "got it all" but he is only human.  The surgeon second time knows of the failure before and will be hopefully, more atuned to the fact that I want it all gone this time, for good, never to return again, and etc.  I'm not afraid of the surgery or post op either.  My point is:  It's not the procedure that was broken, but maybe the surgeon. 

Radiation (CK) (GK) is only as good as the surgeon who makes the correct measurements.  Radiation by the way, I was told could only be administered one time and on a small tumor.  I'm not talking about FSR, but in general.  In other words once the FSR, GK, CK is completed, you can't go back and repeat the treatment again years later if it continues to grow.  Has anyone else heard that?  So if it fails, surgery is the only alternative.  What is the largest a tumor can be radiated?  Anyone know?

I'm still looking for more input.  Thanks

[Mark]

Justfactoflife,

My radiosurgery has been successful coming up on 5 years now, but like FlyersFan I'll offer a couple of thoughts if I was faced with the same situtation based on the comments posted:

Radiation (CK) (GK) is only as good as the surgeon who makes the correct measurements.  I would probably challenge this position in that CK procedures are mapped out by high powered computers and reviewed by a team that includes a Physcist,radiation oncologist , and neurosurgeon. There is far more oversight and validation of the targeting than in surgery where you are 100% dependent on the skill of the surgeon and you hope they had a "good" day

Radiation by the way, I was told could only be administered one time and on a small tumor.  I'm not talking about FSR, but in general.  In other words once the FSR, GK, CK is completed, you can't go back and repeat the treatment again years later if it continues to grow.  Has anyone else heard that?  So if it fails, surgery is the only alternative.  What is the largest a tumor can be radiated?  Anyone know?  Again I would question some of these assumptions. Radiosurgery is generally accepted up to and in some cases slightly larger than 3 cm. There has been some discussion of the retreatment on the CPSG board and the general consensus of the docs there is that there is no reason it can't be done and there are incidents where it has been. However, with a failure rate at around 2% there are just not a lot of opportunities to do it. Also, I would suspect most people adopt the philosophy offered by Flyers fan of doing the opposite treatment of what failed the first time.

I'm not afraid of the surgery or post op either. I think that's a big hurdle to overcome and if you do it certainly makes the surgical option easier to consider. I'm not a clinician , but my entire professional career has been involved in selling medical supplies to hospitals and I am afraid of a surgery of this magnitude. There is no doubt that surgical technigues have improved and continue improve to reduce risk, but the potential immediate and long term impacts of a 6-10 hour on average invasive procedure under anesthesia should never be under estimated. That was a big driver in my decision originally.

Good luck to you

Mark

[justafactoflife]

Mark,

Thanks for the good input.  Can you tell me where you found your info on the

"There has been some discussion of the retreatment on the CPSG board and the general consensus of the docs there is that there is no reason it can't be done and there are incidents where it has been."

What type of side affects did you have?
How big was your tumor?
Did your tumor shrink?
Did radiation affect your tongue, swallowing, or any other areas?
Did you lose your hearing or facial nerve sensitivety because of the radiation or had you already lost it?

From the results of my 1st surgery, my balance is my main issue now more than hearing. After the 2nd surgery I'm afraid that is going bye, bye no matter what road I go down.

[Mark]

Hi Justafactoflife,

Rather than cut and paste the exchanges on the CPSG site, I'll try to post the link and if you scroll down to the last couple you'll see the  AN retreatment comments

http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=6126

Regarding your specific questions:

What type of side affects did you have?   some minor transitory vertigo issues in the first 6 months, nothing since
How big was your tumor?  about 2 cm
Did your tumor shrink?  Yes it was roughly 1.5 cm at the 4 year MRI
Did radiation affect your tongue, swallowing, or any other areas? No, not at all
Did you lose your hearing or facial nerve sensitivety because of the radiation or had you already lost it? My facial nerve function was and still is 100%, My high frequency hearing loss was about 50% but my speech recognition was 90-100% and it has remained stable since treatment

Hope that helps

Mark

[justafactoflife]

Mark,

Thanks for taking time to give me your input and the link to

 http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=6126

I read the thread and have some doubts as to the conclusion and meaning of the Doctors final thoughts.  It sounded to me like they believe it could be done and re-do the CK again later down the road but not well known as you said Mark.

"Radiation dose is limited by how much was received by that and neighboring structures, and there is no restriction on treatment to any other part of the body, or even to other parts of the brain away from the area treated". Jerome J. Spunberg, M.D., FACR, FACRO

The other doctor went on to say:  "San Diego has apparently re-treated AN, but I don't know how many and the results. Things can always be re-treated. It is just a matter of balancing the risks and benefits, and those will be different in every case.[/u]  I would expect it to be pretty safe. The doses used are low enough that even with two courses of treatment the total dose is not much beyond what we sometimes use in a single course of treatment, and there is some healing of normal tissues in between".  Clinton A. Medbery, III, M.D.

My concern based on what was told to me by several physicians and I'm sorry, I don't have it in print and nor can I quote them exactly.  From what Dr Medbery said: "and there is some healing of normal tissues in between", he is referring to scar tissue.  The Neurosurgeon who would assist in doing my CK using Novalis system, says he can and would remove the tumor by surgery if I wanted to, but recommended the CK procedure since I had a previous surgery from before and due to scar tissue would be the least risky for hearing, facial nerve preservation.  This recommendation was due to the scar tissue build up and trying to remove the tumor is more tedious, almost blindfolded because it covers over areas that would have to be cut thru/removed without touching the nerves.  Saving the hearing, balance, and facial nerves is possible but risky with a 2nd micro-surgery. 

The Radiological Surgeon who he would be working with I met also and discussed my questions.  He told me he thought I was a good canidate for Novalis CK but there are no guarantees and I already new that.  When I asked him if for some reason the tumor continued to grow, could I have the treatment again.  Basically, He agreed with the two doctors from your thread. When I asked him if radiation creates scar tissue, he replied yes, it does.   In my opinion then, I would be creating more scar tissue doing CK procedure, making a later surgery very difficult if needed.  I asked if he agreed/He nodded his head, yes.  When I asked if I had to have surgery later anyway for whatever the reason or case would it be feasible.  He told me that scar tissue is what makes the surgery procedure difficult in any type of surgery, but for brain surgery, it is extremely risky when especially trying to avoid brain tissue damage, and nerve loss. 

So,...now the dilema I face is do I risk CK Novalis and hope that it kills the tumor this time and not be sorry later?  OR  Risk surgery for the 2nd time around and find a good doctor who can navigate thru the scar tissue built up around the tumor already?   I never thought I would have to face this choice and I hope none of you ever have to.  Gambling your life on "maybe", "perhaps", "almost", "apparently", or a "would expect", makes your choice very difficult.  Some of you have had surgery twice and with success.  How many have not?  I don't know of anyone who has had CK GK FSR after having surgery but I'm sure there are some in the world who have.  I would value your input, experiences, and opinions.

Ultimately,...it is going to be a gamble and I know it is my decision to make, but this time around, I have to make the best informed decision I can.  Everything said on this forum and others will help me with that choice.  I appreciate the input thus far and thankful that we have this forum to help others as well as myself.

[Mark]

Hi Justafactoflife,

We'll have to find a shorter nickname 

Just as there are no perfectly save and sure options for any of us the first time around, the choice doesn't get any easier when faced with doing again as you are. certainly my best thoughts are with you as you wrestle with what to do. Most of what you recapped from the E-mail string over on the CPSG board is very accurate, but I would offer to clarify a couple of things.

First, I would encourage you to post some of your very valid questions to the docs over there and see if they can add any more clarity for you on some issues. Admittedly the AN discussion on the thread was somewhat offhand at the end but it was the most relevant thing I had seen to your questions to this point.

Second, It is true that the impact of the radiation treatment will result in the tumor having scar tissue around it. Many patients see this in their 6 month MRI intervals where it shows up enhanced ( white) before treatment, in necrosis ( spotted black and duller) in the first 6 months and then back to white ( scarred over) at about a year more or less. It is less certain that surgery on a previously radiated tumor is more difficult. You can find some discussions on it in the archives of this site, but the studies I've seen are fairly inconclusive with some surgeons saying it is more difficult, some the same, some actually easier. The texture will certainly be different, but I suspect the assessment of the difficulty probably reflects the skill of the surgeon as much as anything else.

Third, Dr. Medberry's comments about tissue healing between treatments refers to "normal" tisssue which is the surrounding critical structures that pick up some collateral radiation as the tumor is hit. The abnormal DNA of the tumor does not recover in the same fashion. This is the premise in fractionating treatment in stages ( FSR) which studies to date are giving higher facial and hearing nerve preservation results than One large dose machines such as GK. Studies aren't long enough to be conclusive but preliminary data support that approach.

I guess part of the thought process here might be that with 98% tumor control rates, how much do you want to factor in the probability that you will be in the 2% that fail. Given you are dealing with a failed surgical solution, I absolutely understand why evaluating the "what ifs" of a radiosurgical failure is important.

Lastly, and a big "whoa Pony" on this one  . Several times you referred to "CK Novalis" is the machine your doctors would use. It is easy to get confused with some of the terminology in this process but the Docs should not be making that representation to you as it is absolutely not correct. Cyberknife is manufactured by Accuray, is robotic and is a high dose radiosurgery machine with treatments usually between 1-5 days depending on the situation. Novallis is a different manufacturer whose machine is called "Brainlab" which is typically used to administer radiotherapy which means very low doses over up to 30 days which is generally called IMRT. The link below gives a comparison of the various machines out there

http://www.cksociety.org/PatientInfo/radiosurgery_stereotactic_technology_comparisons.asp

GK and CK are very similar in many regards for treating a AN with the primary difference being that CK doesn't require a headframe and can do FSR. It would be my opinion that any machine other than those two are not as effective but certainly there are those on this board who have used them and have had good results to date.

Good luck, I know you're going through a difficult decision.

Mark

[justafactoflife]

Thanks Mark for the clarifications on GK, CK, and Novalis.  You are right, my nickname is long but too late to change it now.  "Justa" is OK if you want to shorten your typing. 

As you said,

"It is easy to get confused with some of the terminology in this process but the Docs should not be making that representation to you as it is absolutely not correct. Cyberknife is manufactured by Accuray, is robotic and is a high dose radiosurgery machine with treatments usually between 1-5 days depending on the situation. Novallis is a different manufacturer whose machine is called "Brainlab" which is typically used to administer radiotherapy which means very low doses over up to 30 days which is generally called IMRT.".

I wasn't aware they are not the same.  I applogize for my mistake.  So,...that raises even more questions I need to ask my Doctors.  I'm glad you informed me of this.

As for CPSG forum, I read your thread here and registered on it too.  I did ask questions and I'm waiting for repliess.  By the way, ...thanks for sending me there.  Excellent way to see the alternative points of view on this choice of procedures for AN.

I have one more question for you:   If faced with a re-growth of your tumor, what would you do given the complications/risks for a second time treatment?  CK, GK, Novalis, or Micro-surgery?  Where would you do it at?  (OK, so I asked you two questions)
 

[HeadCase2]

Justa,
  Some treatment teams don't see surgery and radiation so much as an either-or decision, but rather as a complimentary set of tools available for treatment.  Check with user becknell, her husband had surgery, but a portion of the tumor was stuck to the brainstem.  The surgeons decided it was best to leave that portion of the tumor in place an treat it with GK, rather than risk brain stem damage trying to remove it.  I've talked to him, and he's doing quite well.  As far as I know he's had no complications from the GK treatment.
Regards,
 Rob

[Mark]

Hi Justa,

Those are two very challenging and fair questions and I know I would struggle with it as you are doing. As I mentioned previously I have strong concerns about subjecting myself to a major invasive surgery even though my age ( 49 this week) and overall physical condition would make it easier. On the other hand I would probably also struggle with the philosophy Flyerfan noted of why do something again if it didn't work previously. All in All, I would start down the path of the viability of trying radiation again and look into surgery as a last resort.

I would stay at Stanford for either option, obviously my current neurosurgeon Dr. Chang for CK and then choose Robert Jackler assisted by Chang if surgery became a necessity. Dr. Jackler has done well over a 1000 AN's and recently came over from UCSF, he is also probably the most published on AN surgical studies. Certainly, I hope I don't ever have to consider that decision 

Mark

[Captain Deb]

justafact--I am VERY  interested to know when your first surgery was, and how long after was your re-growth diagnosed. Also what you MRI schedule was post-op. My neuro suggested 5 years, but I think that's a little too far out for my comfort level.  No more surgery for me, though, if I do have a re-growth--I'll have it zapped for sure.
Capt Deb

[justafactoflife]

Hi Captain Deb,

I am VERY  interested to know when your first surgery was, and how long after was your re-growth diagnosed. Also what you MRI schedule was post-op.

I had surgery 1st time July 2003. This was after being diagnoised June 2002.  I had an MRI every 12 months post-op and nothing was detected.  My last MRI was Feb 2005 and nothing found.  Then, late in that year I began noticing my ears were ringing louder and I had more dizziness when driving or walking.  I also had a neck fusion done in Sept so,...I wasn't alarmed too much.  I just thought it might be due to the neck injury and the fact that I'm getting older.  I mean after all, the tumor was gone and they "Got It All", right? 

I was told to expect my hearing would eventually deteriorate as you get older, because of the surgery on the nerve and scar tissue build up.  After taking a leave of absence due to the stress/anxiety/depression/pain, I thought related to all my neck symptoms I finally found a doctor (ENT) who sent me back for another MRI in June of this year. He did the MRI to rule out other things but also to check the brain as a precaution.  Even my primary care doctor who initially found the 1st tumor was shocked.  We both thought that since I was post-op 3 yrs, I could put off the normal MRI until later or even next year since I had been doing so well.

My recommendation would be to have an annual MRI no matter what.  As for having it zapped, that is what I'm setting up right now.  The scar tissue build up will make surgery again both very difficult and risky for further damage.  I am taking the advice of several folks here and at cyberknifesupport.org  I have family in OKC and that is where I am going since it is in my insurance network and Dr Clinton Medbery, III is reportedly very experienced in CK.

I chose CK because of the accuracy, no head frame, and state of the art differences in it and GK or Novalis.  I felt I needed to get the best shot at the darn thing this time around.  Dr Medbery and his team have over 10yrs experience in CK and GK and they recommend CK as the best treatment option, especially in a re-growth small tumor less than 3cm.

Good luck and I hope none of you ever have a re-growth. An annual MRI, whether to do it or not, is not an option in my book.

[Captain Deb]

Justa--thanks for your reply.  Interesting--I lost all my hearing and balance function on my AN side--so how would I notice any additional symptoms ? Especially with  my balance nerve totally resected along with the tumor.  I'll be seeing my neuro in 2 weeks and I'll get him to order the MRI in Nov.  Thanks for posting your story.
Capt Deb