Author Topic: Radiation for large tumor?  (Read 9209 times)

ASG

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Radiation for large tumor?
« on: August 06, 2013, 08:43:48 am »
This post is sort of a part 2 of my trying to make a treatment decision.  I've had 4 consultations so far: House Clinic, Dr. Chang at Stanford, Dr. Thompson at U. of Michigan, and UPMC.  I've heard different arguments for and against having radiation treatment. 

Has anyone out there ever had a large AN radiated and/or had radiation at a younger age?  How did you decide and what was your experience like?

Some background: I'm 31 years old and have a 3cm AN on the left side.  I still have near perfect hearing, and perfect speech discrimination, on the AN side.  I have very subtle balance problems every so often and a little bit of facial numbness.  Below is a brief summary of the four opinions:

Dr. Slattery at House:  You should have translab surgery.  If the tumor was 2cm or less I'd be more likely to recommend radiation, but because its 3cm there is only a small likelihood the radiation will work.  In addition, you are too young.  We don't know what the effects of radiation are 30 years post treatment (if it could become malignant).

Dr. Chang at Stanford:  Not only could you have radiosurgery, you should have radiosurgery.  Radiosurgery will give you a 50% chance of keeping your hearing 10 years out, and there is only a 1-2% chance radiosurgery could cause facial paralysis.  There is a 95-96% chance the radiosurgery will control your tumor.  Even if it didn't control your tumor, post-radiation surgery is not necessarily riskier, sometimes it is and sometimes it isn't.  The chance of malignancy is 1 in 10,000.  It is so rare there aren't enough cases in history to have a study on it.  You are more likely to die due to the operation, a car accident, or anything else.  People who say there is a risk of malignancy are either fear-mongering or uninformed.

Dr. Thompson at U of Michigan:  You should have surgery.  Specifically, we should do a retrosigmoid approach to see if we can get the whole tumor out, and if needed do a second stage translab approach to access the tumor from a different angle.  The goal of surgery is facial preservation, and the two stage approach gives you the best odds.  Radiation is certainly a choice you can make but I can't recommend it.  Radiation would have a 90% chance of working.  With radiation you'd have a 50% chance of keeping your hearing, a 2-4% chance of temporary weakness, and a 1-2% chance of permanent facial paralysis.   With surgery, the risk of temporary weakness is 33% and permanent paralysis 5-10%.  I disagree that the chance of malignancy is 1 in 10,000.  In my practice I've already had a patient with AVM who had malignancy transfer 8 years after radiation.  I agree that it's rare but would say its as high as 1-2% lifetime.   If the tumor became malignant, it could be treated and there is a high likelihood you would survive.

Dr. Altschuler at Pitt:  You should have surgery.  Specifically, we should do a retrosigmoid approach, and if the tumor doesn't come off the facial nerve easily, we should leave a little bit and watch to see if it grows or radiate the little leftover piece if needed.  Retrosigmoid would at least give you a minimal chance of saving the hearing even though its pretty unlikely.  Your tumor is larger and has several cysts in it.  We know that larger tumors don't respond as well to radiation, and cystic tumors don't respond as well, so that's two strikes against you.  Thus the chance that radiation would work is less than the 95% others may tell you, but I really don't know what the likelihood is (I tried to pin him down but he refused to guess what the odds were of success in my case).  Furthermore, if the radiation failed the subsequent surgery would be much riskier because the facial nerve would be more sensitive due to the radiation.  The chance it would become malignant is so incredibly rare its almost impossible.  The reason to not have radiation is because its less likely to work; malignancy should have nothing to do with it.   In summary, having radiation isn't a terrible idea for you, and it could work, but its not my recommendation.


So, 4 different very well known, highly respected surgeons, and 4 different opinions.  Only Dr. Chang recommends radiation, but the other three don't even agree on their rationale for rejecting radiation.  Furthermore, the three who recommend surgery all recommend slightly different procedures.  I am really getting frustrated!  I can't decide what I'm most comfortable with because each physician's sense of the risks and benefits are totally different!  I very much want to believe Dr. Chang but don't want to decide based on wishful thinking.  Has anyone else ever been down this road?  Is there anyone who had a larger AN and considered radiation and either did or did not do it?  And if so what was your outcome?  Thanks so much!

Adam
« Last Edit: August 06, 2013, 08:50:10 am by ASG »
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

nftwoed

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Re: Radiation for large tumor?
« Reply #1 on: August 06, 2013, 11:12:43 am »
Hi;
   Well, re Dr. Slattery; They've been performing GK on ANs since 1968 or 69, so, there is a record. They did use a higher dosage then. There was no MR then. Only mylegram ( spinal tap with x-ray ). That's what I had first time.
   After reading 100s of stories, I too am skepital of radiation working permanantly on such a large AN. I would prefer to see it debulked first and then radiated if there's going to be a fair chance at hearing retention.
   Re, the facial nerve; I don't see it as problematic with either type Tx.
   Just a pt. Now; If it were really me having to make the decision for me at the same age, I'd opt for Translab, give up chances of potential morbidities, and sacrifice the hearing. That being the case, Dr's might let you watch and wait this AN until it begins to deviate the brain stem. I'm guessing, 7.5 more years, or, is it touching the brain stem already?
   I'm aware Hitselberger let an NF-2 friend of mine get to 3.75 cm befor TL as he had perfect hearing and very minor balance problems. Problem was, my friend was already deaf the other side! Now; That's depressing!! But, he's back to being a school teacher with much work, and an ABI.

mesafinn

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Re: Radiation for large tumor?
« Reply #2 on: August 06, 2013, 12:19:09 pm »
It won't hurt to continue to get even more opinions.  I fully can appreciate how frustrated you must be. 

Given the size of your tumor, surgery seems to make sense, particularly when UPMC (known more for radiation) recommends it.  Determining a surgical approach is also tricky but I, personally, was more partial to translab--assuming I would eventually lose my hearing.  But as you're finding out, for each individual you speak with, the more variety, input, and rationale you will receive.

Research, research, research--and listen to your gut.  Only you will have to live with the result of whatever you decide, and you care more about your health than anyone else.

I wish you very well, and I wish you peace.
Oct 2012:  Constant Pulsatile Tinnitus
Feb 28, 2013: Dx AN 1.4 cm X .9 mm
April 19, 2013:  GK at UPMC w/Dr. Lunsford

Some things in my life need to matter less, and other things in my life need to matter more.  So yes, I'm taking this as a "lesson learned experience."

ASG

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Re: Radiation for large tumor?
« Reply #3 on: August 06, 2013, 12:49:17 pm »
That being the case, Dr's might let you watch and wait this AN until it begins to deviate the brain stem. I'm guessing, 7.5 more years, or, is it touching the brain stem already?

Oh its pressing into the brain stem alright.  Big time.  I still remember when the ENT first pulled up the film and said, "Ok Adam, so really this is a very large tumor, and you can see how its really pushing into the brain stem.  See over on this side how it looks normal, and now see how distorted it looks on the other side?"  Worst day of the journey so far.

But despite that, no one, not even the physicians recommending surgery, say this plays a role in the decision.  I even asked Dr. Thompson what would happen if the radiosurgery just halted the growth and I had this big dead tumor pushing into the brain stem for the rest of my life.  He said it didn't matter.

Nftwoed, like you I was also skeptical of radiation.  I talked to House first and after that was very against it.  But when a well known neurosurgeon from Stanford calls you on the phone and says, "Adam, if you have radiosurgery its going to work, and there's a decent chance you keep your hearing.  I'd do it if I were you", man, that's really hard to just throw away!

Mesafinn, thanks so much for the support.  The UPMC surgery recommendation is a big factor.  Dr. Chang predicted that Pitt would recommend radiation, and Dr. Thompson predicted they wouldn't.  However, when the Pitt Dr. said that insisting on radiation, "wouldn't be a terrible decision", that still placed some doubt in my mind.

I just can't believe its 2013 and the cream of the crop in this field could have such drastically different recommendations!  If I had the money, I'd pay anything to fly out Slattery, Chang, Thompson, and Altschuler, and lock them in a room together until they agreed on a treatment recommendation!
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

robinb

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Re: Radiation for large tumor?
« Reply #4 on: August 06, 2013, 12:58:45 pm »
One more recommendation for you.
The doc you spoke with at UPMC is a surgeon and to my knowledge does not work as a team with Dr. Lunsford who runs the gamma knife program. I would suggest you have him review your MRI.

In my experience doing my research each doc will advocate for their particular specialty. I could find no group that really worked as a team in the various approaches.
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

mk

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Re: Radiation for large tumor?
« Reply #5 on: August 06, 2013, 01:43:22 pm »

 Has anyone else ever been down this road?  Is there anyone who had a larger AN and considered radiation and either did or did not do it?  And if so what was your outcome?  Thanks so much!

Adam

I have been exactly down this road (see my signature below). I was a a few years older than you when diagnosed, and I had an almost 3 cm AN,  pressing on the brainstem. I was almost non-symptomatic when diagnosed.
For many reasons I chose GK, hoping that it would work. They had to use slightly less amount of radiation, to avoid swelling.  I didn't have any side effects right after the treatment, but I did end up losing my hearing completely. Long story short, the AN continued to grow and eventually I had surgery to remove it. I got varying opinions about the chances of facial paralysis, but I chose the best surgeon that I could find, and I ended up completely free of side effects. He did have to leave a small sliver of the tumor that was stuck on the nerve.
If you would like further details, please feel free to PM me.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

ASG

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Re: Radiation for large tumor?
« Reply #6 on: August 06, 2013, 02:44:19 pm »
Thanks Robin!  As soon as I saw your reply I called UPMC.  Everyone over there is in clinic today but I left a message with a nurse coordinator.  Hopefully Dr. Lunsford will be willing to give me his opinion!

Marianna, its great to hear from someone else that had a very similar presentation to me (and who ultimately had a good outcome).  I will definitely message you when I get home later.  (I've have an incredibly productive day at work today if you count AN research and spending time on this site  :))
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

robinb

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Re: Radiation for large tumor?
« Reply #7 on: August 06, 2013, 03:13:56 pm »
Adam-

Glad you did, the research part of this journey can be so exhausting!

Dr. Lunsford will review at no charge. I was in contact with his PA for follow up today and I believe their next internal review is August 19th. In case you don't have all the info, the person to coordinate with is Kelly Powell. This is also the address and contact to send your disk to as well. Her contact info below:

Kelly Powell
Administrative Coordinator
Center for Image Guided Neurosurgery
Dr. L. Dade Lunsford
Dr. Ajay Niranjan
UPMC Presbyterian
1st floor- Room F-188
200 Lothrop Street
Pittsburgh, PA  15213
Phone- 412.647.7744
Fax-412.647.8447
powellkc@upmc.edu
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

ASG

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Re: Radiation for large tumor?
« Reply #8 on: August 06, 2013, 04:36:02 pm »
Robin, you are a lifesaver!  I had sent my stuff to the department of neurosurgery (which also does free phone consultations) thinking it was the same thing.  I read your reply right before the UPMC nurse called back, and thanks to the information you provided, was able to smoothly route my MRI slides (which are already there) directly to Dr. Lunsford, who should get them by the end of the week.  Again, thank you so much!  Without this information I would have assumed I had spoken to someone speaking on behalf of Dr. Lunsford's clinic!
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

robinb

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Re: Radiation for large tumor?
« Reply #9 on: August 07, 2013, 04:02:22 pm »
 :)
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

michaela

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Re: Radiation for large tumor?
« Reply #10 on: August 10, 2013, 08:51:57 am »
Hello Adam,

are you talking about a Gamma-Knife treatment? I am not an expert, but from what I have come to understand, big tumors (over 2,5 cm) are not only more dangerous to radiate (because of the temporal swelling that the radiation might induce. So, if the tumor is already pressing on the brainstem, how much further can it go?) but also: the chances that the radiation will work are lower. Even more so if it's an oddly-shaped tumor. For Gamma-Knife you will find success-rates ranging from 90% to 95%. Since you have quite a big tumor, you are already on the 90% side, I think. That's not phantastic, and a surgery on top of radiation is not a walk on the beach (for the surgeon).

What I have come to understand is that the most important thing is that you go to a center of excellence. Acclaimed surgeons can remove all of the tumor in 98% of the cases. And in 95% they won't damage the facial nerve. I guess their statistics would be even better if they didn't have to deal with patients that had been radiated before.

I had Gamma-Knife on a partially removed tumor and then a second surgery on top of it. My first surgery was performed by a well-meaning but inexperienced doctor. I would have less problems, if I had gone to a center of excellence from the start.

michaela

 

 

ASG

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Re: Radiation for large tumor?
« Reply #11 on: August 21, 2013, 01:38:41 pm »
So I talked to Dr. Lunsford on the phone yesterday.  He flat out recommended I have gamma knife.  He said in my case there is a 95% chance it will control the tumor, 50-60% chance I retain serviceable hearing long term, and a less than 1% chance of facial paralysis.  This is despite the fact that it is larger and has a cystic characteristic. 

Michaela, I did ask about the risk of surgery post-radiation (if radiation fails).  Dr. Lunsford said that in 2% of these cases, the surgery will be riskier because of the radiation, and in the remaining 98% of cases the surgery is either no different or easier because the blood supply to the tumor has been reduced.

According to Dr. Lunsford risk of malignancy is 1 in 1,000 or even 1 in 10,000.

Like you I am trying to be skeptical of the likelihood of a positive outcome with GK given the size of my tumor (and the split recommendations among surgeons I've consulted with), but Dr. Lunsford has presented gamma knife as a highly effective, low risk option.  I guess the question is whether I believe he is right.

So now there are no other surgeons to consult with.  I have all the information and just need to make a decision.  Too bad I'm still not sure what it will be.
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

robinb

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Re: Radiation for large tumor?
« Reply #12 on: August 21, 2013, 03:20:07 pm »
Hi Adam-

I don't envy your position right now as you have a difficult decision to make. You could seek other opinions, but I could almost guarantee that whatever the specialty of the doc you consult, they each would recommend the procedure they specialize in. But there are more docs who will be happy to review your MRI, if you think that will help you decide.

I could tell you what I would do faced with the same situation, but it doesn't matter what I would do.

So, weigh the pros/cons of each and then ultimately, you will be able to decide what is the best decision for you now, knowing the possible outcomes and risks associated with each.

You can consider what others would do in your shoes, but the end of the day, only you will know whats right for you.
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

ASG

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Re: Radiation for large tumor?
« Reply #13 on: August 21, 2013, 06:46:47 pm »
Thanks for the support, Robin!

I completely agree with you that I won't get any additional insight from more opinions at this point.  I can probably predict what any given doctor will recommend based on their training history. 

And you are right that this is the hardest decision I've ever made.  I have it narrowed down to GK at Pittsburgh or surgery with Dr. Thompson at U of M.  Right now I'm 60/40 in favor of GK but who knows how I'll feel tomorrow.  Unlike most people who have posted on this site I don't think I'll feel any relief after making a decision and will continue to wonder "what if" and play out catastrophic hypothetical scenarios.   Its tough to know that whatever I choose there will be highly respected doctors who will consider it the wrong move.
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

nftwoed

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Re: Radiation for large tumor?
« Reply #14 on: August 21, 2013, 06:47:03 pm »
Hello Adam?

   My feeling is Dr L. is a bit/a lot optimistic when he quotes %s of hearing retinance. My guess is 50 - 60% chance for 3 years before deterioration sets in. I assume the AN is in the CPA and those do tend to be less affected by surgery. Seems to me facial paralysis comparison is a wash.
   I do believe GK will control AN growth but am concerned at the cystic formation. A cyst often represents the end of the tumor's growth cycle as they often occur with reduced blood supply.
   Would say Dr. L. should have a surgical team on standby in case you need a ventricular shunt as cysts can increase in size rapidly, and exponentially. Enough to produce hydrocephalous.
   A conversion to cancer discusion of AN is hardly worth the bother. The possibility is so remote.
   Re, surgery after a failed radiation attempt, I don't believe that is a great issue with expert and experienced neurosurgeons.
   I believe it is generally accepted the risk of surgical complications increases in ANs 2.00 cm. +
   They can't debulk the AN and irradiate the remaining? Wow! What a decision. I believe the overall advantages and risks are about the same with either approach. Personally; I lean toward surgery of large ANs, but alas, am just a pt. also.
   Best wishes in all!


So I talked to Dr. Lunsford on the phone yesterday.  He flat out recommended I have gamma knife.  He said in my case there is a 95% chance it will control the tumor, 50-60% chance I retain serviceable hearing long term, and a less than 1% chance of facial paralysis.  This is despite the fact that it is larger and has a cystic characteristic. 

Michaela, I did ask about the risk of surgery post-radiation (if radiation fails).  Dr. Lunsford said that in 2% of these cases, the surgery will be riskier because of the radiation, and in the remaining 98% of cases the surgery is either no different or easier because the blood supply to the tumor has been reduced.

According to Dr. Lunsford risk of malignancy is 1 in 1,000 or even 1 in 10,000.

Like you I am trying to be skeptical of the likelihood of a positive outcome with GK given the size of my tumor (and the split recommendations among surgeons I've consulted with), but Dr. Lunsford has presented gamma knife as a highly effective, low risk option.  I guess the question is whether I believe he is right.

So now there are no other surgeons to consult with.  I have all the information and just need to make a decision.  Too bad I'm still not sure what it will be.