Author Topic: Choices ??  (Read 7193 times)

ghenier27

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Choices ??
« on: June 14, 2009, 11:07:22 am »
Hi as a still newbie on this site( and thank goodness we havee this place), I like many others have been meeting the rest of you but still have a discussion question. It seems to me, what I have read that most doctors still perfer surgery over radation. Now here is what I would like input on. It is my understanding the reason being-if you should require future treatments of radation for something eles. You wouldn't be able to have it because you would have had the max dose a body could handle from treating the AN.
Secondly, if the radation doesn't work and you end up having surgery anyway, it is harder to get the tumor off the nerves.
Thirdly, it is always the possiblity of creating cancerous cells in the healthy cells around the tumor.

How many of the menbers here, were actually told this? Or were you told something completely different?

I cann't wait to hear the replies...... thanks for reading! Your newbie Debi

Jim Scott

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Re: Choices ??
« Reply #1 on: June 14, 2009, 02:21:44 pm »
Hi, Debi ~

My fellow moderator, Steve, usually answers these questions succinctly but since I got here first, I'll offer you my opinion.

I believe it's as much perception as reality that 'the majority of doctors prefer surgery over radiation' because a new AN patient is very often referred to a neurosurgeon, who will, quite logically, believe that surgery is the best solution to an acoustic neuroma because that is what he does, and if he isn't current with AN-related procedures, he may well think that he is offering you the best option.  This is why you need to have at least two doctor consultations and one with a radiation oncologist, if possible. 

The rationale for doctors advising against radiation treatment for acoustic neuroma used to be exactly what you stated, i.e. that the radiation will cause you to 'max out' your body's safe radiation level (because the radiation stays in your body) making future radiation treatments (for cancer, usually) impossible.  Not exactly. The radiation you receive to treat an acoustic neuroma is extremely localized to the precise area where the AN resides and doesn't preclude radiation treatments (in other parts of your body) in the future.  Others may be able to elaborate on that issue.

The old canard about the radiation-treated area (which is quite small) being harder to work on if surgery is required (assuming radiation fails to kill the tumor) has been pretty much disproved by reality.  Unfortunately, some surgeons tend to cling to this supposition, even when it has been proven more theoretical than real.

The risk of surrounding cells becoming cancerous is infinitesimal, at best and not a real concern. 

I underwent 26 FSR treatments and wasn't concerned about any of these alleged 'risks'.  My neurosurgeon performed debulking surgery (cut my large AN down to a more manageable size) and worked closely with a radiation oncologist to 'map' my radiation treatments.  Both surgery and radiation were successful with almost no noticeable complications.  I was never 'warned' of any real risks with the radiation, except that the radiation oncologist explained the procedure and basically laughed at the 'old wives tales' about the alleged 'dangers' of radiation on acoustic neuromas.  He admitted the infinitesimal 'risks' but said he had never seen any of these occur.  I believed him.  So far, so good.  :)  I trust these answers will  prove useful to you.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

CHD63

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Re: Choices ??
« Reply #2 on: June 14, 2009, 03:50:58 pm »
Hi Debi .....

Jim has answered your questions very well, especially about getting more than one opinion ..... and the myths surrounding the fears of radiation exposure.

When I looked back, you posted a month ago that your AN is 1.6cm, which means you are still within the size limit for several choices of treatment.

My AN was 2+cm at the time of diagnosis (with an MRI one year previously being negative for any AN).  Since I had an apparently unusually rapidly growing AN (the vast majority of ANs are very slow growing!), my options were more limited.  I am older than you are and in otherwise good health and had an extremely positive result from retrosigmoid surgery.  Although I was retired before my diagnosis, I certainly could have resumed working from a health/physical standpoint after surgery.  As you probably have read on this Forum, each AN patient is a unique individual so none of us can say or know for sure what the outcome is for any choice of treatment.

As Jim said, if you have more than one consultation with physicians of different treatment options, you will better be able to make your decision.  Each experienced physician (cannot emphasize enough that you find the most experienced!) will naturally feel that his/her treatment choice is the best.  At that point, you need to trust your own intuition (gut, if you will) and go with it.

My thoughts and prayers as you make these evaluations/decisions.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

sgerrard

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Re: Choices ??
« Reply #3 on: June 14, 2009, 08:46:30 pm »
It seems to me, what I have read that most doctors still prefer surgery over radiation.

I think what you have read or heard is that most surgeons prefer surgery over radiation. No big surprise there. As we all dwell on the many aspects of AN treatment, it is easy to think that all the neurosurgeons do as well. But they specialize in brain surgery, which is a broad and deep field of study. Most of them are not spending much time studying or practicing radiation treatment.

I suspect most or all of us have heard these same comments on radiation from surgeons. The best way to learn about radiation treatment is to talk to a radiation oncologist who specializes in it, and studies and practices it every day.

As for answers to your questions, my fellow moderator Jim said it very well. The only more succinct answer from me is "what Jim said."  ;)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

ghenier27

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Re: Choices ??
« Reply #4 on: June 15, 2009, 06:02:18 am »
Thanks, as youall have been down that road before me. I have even thought about sending my MRI to House and see what they think. Afterall, it wouldn't hurt to get a second opinion? I jsut want to be as well inform for my meeting next week. And be open minded about this whole thing. Debi

nteeman

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Re: Choices ??
« Reply #5 on: June 15, 2009, 06:31:26 am »
Steve,

I have to disagree with your statement about Surgeons being against radiation. When I was doing my research I found that both surgeons I chose were open to radiation as an option but presented their case why in my case they thought surgery was better. But even putting that aside, I consulted with several doctors for advice that were neither surgeons nor radiologists, I just wanted their opinions. While one was a GP and had much praise for radiation therapy the other three (GPs and Internist) were cautious of radiation as long as surgery was viable with reasonable risks. They each had unfavorable opinions for radiation therapy for someone my age. I don't think it is fair nor realistic to say surgeons are against radiation therapy.  One of the Radiologists I consulted advised me that they could probably treat my AN without even seeing my MRI!

Anyone researching their options need to seek advice from doctors they trust and weigh their opinions with all the others they gather. If a surgeon thinks that surgery is better than radiation one should ask why they think that rather than just think all surgeons are against radiation.  I think it is missleading to tell someone who is researching their opions to disregard a surgeons opinion because all surgeons are against radiation. It just may be the surgeon has a valid medical reason that need be considered and is not just surgeons bias.
Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
Dr.Bederson & Dr. Smouha
9:30am thru 5:50pm
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Vivian B.

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Re: Choices ??
« Reply #6 on: June 15, 2009, 08:49:08 am »
Hi there,

When I went to see my surgeon, I thought the next step was scheduling a surgery date. The surgeon insisted that I see his colleague a Neurosurgeon who is the founder of the gammknife centre here in Toronto Canada. The surgeon said if I wasn't pleased withthe Neuro's assessment I could go back to him. When I read the surgeon's recommendations to the Neuro, he asked the Neuro to consider me for radiation treatment. When I went to see the Neurosurgeon, he already  had with him an oncologist who provided a brief explanation, risks minimal and suggested I go on W & W for now.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

ghenier27

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Re: Choices ??
« Reply #7 on: June 15, 2009, 12:24:51 pm »
Thanks for continuing with the replies. I think that my next appointemnt will be with the surgeons. But I also have to meet with the  others as well. I have already been told it is going to be a team effort. And I haven't even started with any other tests yet-other than the hearing & MRI. With that being said, it wouldn't surprise me if when and if I got a surgery date-it would be in August-September. But who knows? Unversity Of Florida ( Shands At UF ) usually don't do things right away unless it is a life and death matter. Which is why, I am trying to learn and understand as much as I can. And control my axniety about this whole An thing.

Youall are the best! :D I am so lucky to found a new wonderful set of friends. I just wish it was under different situation. And anyone heading into surgery, please keep us posted. I will keep youall posted. I cann't wait until I can become a postie toastie too!

Cheryl R

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Re: Choices ??
« Reply #8 on: June 15, 2009, 03:31:30 pm »
Any other tests will depend on your drs protocol and routine.       I've never  had any balance testing done.      I guess an ABR would count as part of a hearing routine.         So time will tell what you will be having.                     I've never heard of anyone else who goes to Iowa City who has had balance testing either.   
                                                      Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

juliec

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Re: Choices ??
« Reply #9 on: June 20, 2009, 12:53:32 pm »
I just saw a neurosurgeon yesterday who said "if you were my wife, you'd have radiation." He doesn't even do radiation! Obviously, there are probably some surgeons biased towards surgery, but that doesn't mean they all are. That being said, I'm still not sold on radiation. I will definitely be talking with more doctors. I think the more opinions you can get, the better informed you are to make a decision.
Julie C.
Bloomington, MN
1.8 x 1 cm Middle Fossa surgery Univ of IA 8/13/09

sgerrard

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Re: Choices ??
« Reply #10 on: June 20, 2009, 03:25:36 pm »
"if you were my wife, you'd have radiation."

I agree, not all surgeons are biased. This is a link to a survey of some 600 neurosurgeons done in 2002 at Pittsburgh. Many preferred watch and wait or radiation for smaller ANs, especially if they were the patient.

http://www.acousticneuroma.neurosurgery.pitt.edu/docsurvey.html

It's often a question of how well they understand the kind of radiation treatment used for ANs, versus what they have heard about whole brain radiation, which is much riskier.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Jackie

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Re: Choices ??
« Reply #11 on: June 20, 2009, 05:37:51 pm »
Great article Steve, wish they would do another survey today, with the knowledge they have now!!! It would be interesting to see if there would be much difference in their answers!!!
Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

Jim Scott

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Re: Choices ??
« Reply #12 on: June 20, 2009, 05:58:39 pm »
Debi ~

I hope I made it clear that your former belief about 'the majority of doctors being biased against radiation' was more perception than reality....and why this was so.

About a year ago, my neurosurgeon turned away an AN patient I had referred to him (through this site) for possible surgery and personally walked him to the office of a radiation oncologist in the hospital next door because he felt his tumor was small enough for radiation!  As I stated in my prior post, that same neurosurgeon worked very closely with a radiation oncologist to 'map' my 26 FSR treatments for the best advantage to me of having the remaining AN effectively 'killed'.  Apparently many other surgeons are amenable to an AN patients undergoing radiation instead of surgery, when that option is feasible.  Initially, it wasn't in my case because my AN had grown too large to safely radiate, but my neurosurgeon was able to reduce it's size and make it possible to safely irradiate.   It all worked out well.  Again, just because it seems as if 'most' doctors are not inclined to recommend radiation for (smaller) acoustic neuromas, doesn't mean it's really the case, as my experience and that of others here can attest.  I trust this issue is now a lot clearer.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Esperanza

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Re: Choices ??
« Reply #13 on: June 20, 2009, 06:04:55 pm »
It is a good article, however, at the end of the day it is only a hypothetical question for the Drs.
We all know I'm sure how easy it is to do a "well if it was me, i would..."  when we aren't actually walking in the shoes...
Just a thought.
Profoundly deaf suddenly on AN side with vertigo January 3rd 2008.
12mm left side AN diagnosed 20th Jan. 2008.  MRI  in July shows no growth. What do I do now?????

sharonov

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Re: Choices ??
« Reply #14 on: July 09, 2009, 08:05:56 am »
It was this study and reading the list of possible permanent side effects with conventional microsurgery that made me vow that if my tumor ever started growing I'd have radiosurgery.  And hearing Dr. Chang explain the Cyberknife at the last symposium made me lean very strongly that way were I ever to need it. 

I also think that if I were undecided I'd only see a doctor who does both, since each "specialist" is fervently devoted to his own thing.  That's the problem I'm having now that supposedly only opening my head will help the AN plus the Trigeminal Neuralgia.  The Skull Base Institute argues fervently for the endoscope; the House Clinic views that as snake oil with a knife, and fervently argues for chopping my head open.

I don't want a choice anymore.   ???I want God to come down (not a doc who thinks he's God) and say, "Sharon, this is the way."
Sharon

 


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