ANA Discussion Forum
General Category => AN Issues => Topic started by: heusch on February 17, 2010, 06:10:01 pm
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I have diag. 3 1/2 an and have had 2 opinions from radiologist and 2 from surgeons/ 2 surg. say surgury . the 2 radioligist say they can do it. ??????.with radiation
It is close to the brain stem /symptoms are some unbalance and numbness left side lips/
Bob
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Bob -
AN treatment is usually a personal decision if you have both radiation and surgery open to you.
With an AN of 3.5 cms most doctors won't do radiation - 3 cms is usually the threshold.
You mention that 2 of the doctors you've seen say radiation and 2 say surgery. Do any of these 4 doctors do both?
The reason I ask is that doctors who do surgery tend to suggest surgery and doctors who do radiation tend to suggest radiation.
If you haven't already, you should see a doctor who performs both and see what his opinion is.
Just my take on the situation.
Good luck,
Jan
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I had been leaning towards radiation. One of the doctors at HEI said to forget about radiation because there is no long term information about treating these tumors that way. I am 60 years old...he said if I was 70 or 75, then radiation would be okay, because my life expectancy would be short enough then not to worry about long term effects. There were more reasons against radiation. I read just about everything HEI has on that topic.
My early symptom was the wonky headed feeling...the room is spinning around me. The doctor that wanted to treat me with radiation said that this is a rather brutal surgery, and I could just relax and let the gamma knife do its job, and then go home. He said I would retain my hearing...but he didn't tell me that in about 6 years my hearing would probably fail...product of the radiation. The gamma knife would be much easier than the surgery. Then I met the radiation doctor, and he was far to casual about answering my questions. Questions that he could not answer, he said he would call me back after getting the information. He called me back, but beat around the bush about the answers so much that I have decided not to use those doctors or that hospital.
Surgery looks like a better choice. I live in Austin, and most people here say go to Dallas or Houston. I look on line here and find enough information to make an appointment in Houston. This doctor said he wants to do surgery...translab...I will lose my hearing, but it is not good to start with...not a huge loss. The doctor said he will keep my face working, but it will take some recovery time. One huge thing he told me is that radiation is a reliable treatment with the right circumstances, but not for me. My wonky headed life would not be improved by radiation. The balance nerve could still be alive, and providing improperly timed information to my brain. We would have just have stalled the tumor. The surgery will remove the tumor and my inner ear, leaving my good side to do the balancing. I have been doing the wonky thing for three years, so I have been relying on my good side for most of my balancing...I can stand on one leg and even walk in the dark...usually. I am expecting a call today to set my surgery date.
When I started reading this forum two months ago, I wanted an easy answer...radiation or surgery. Come on somebody, help me out. This has been driving me crazy and my wife crazy. We have cried, and we have prayed, and asked for answers that are not coming easy. I have changed my mind a handful of times about what to do. You will have to make up your own mind. Age is a consideration about radiation. Your finances will play a big part...can your be out of work for 2 months. Your general health is a biggy. Do you have a support group to help you out after surgery...and lots of other things.
What really helped me was to find someone on this forum who had good results, contact them, and listen to their story. They are not doctors, but have "been there,done that." You will find the answer that is best for you, but you won't find it over night. Now that I have made a decision, the pressure is off...at least about the decision. Talk to more than one doctor. Remember that doctors do not always tell you the entire truth, not out of deception, but every case is so different. Sometimes YOU will hear something the doctor said, or did not say, and form an opinion that has no basis. Take notes. Ask questions. Keep coming back here. This is not just a "you'll get better site." Lots of answers here. Good luck to you.
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I think, James, that the doctor at HEI needs a refresher course. Oh man. Steve!! Help me!! I can't believe that doctor would say that. I was 60 when I had my radiation. There are people on here much younger who have had radiation to treat their GK. The hearing nerve is a very tiny and sensitive nerve and when it is deprived of oxygen, it will cease to function.
I'm sorry, I'm just flabbergasted that the HEI doc would say the age limit to radiation was 70 to 75.
Flabbergasted in Vancouver, USA, :o
Sue
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I had been leaning towards radiation. One of the doctors at HEI said to forget about radiation because there is no long term information about treating these tumors that way.
james... GammaKnife (GK) has been around for over 40 yrs and there is long term study results on its efficacy.... CK has been around for over 15 yrs and studies are coming out on its efficacy. Both tout high success rates.
great link for reference:
http://www.cyberknife.com/Forum.aspx?g=posts&t=2528#jumptobottom
Drs tout what they know... and they don't reference where their comfort levels aren't.
Phyl
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Oh boy, here we go! I sent my MRIs to Dr Friedman, HEI. He certainly is a qualified doctor in this area. He called me and said he can do surgery and/or radiation. He said radiation has its place. He said that as young as I am, 60 and healthy, stay way from radiation. My life expectancy is at least 25 to 40 more years. He said if you read the reports and papers he has available in a critical manner, there is not enough long term data available that he can recommend radiation over surgery. There is plenty of information on line at HEI that confirms what he told me. He told me he recommends against radiation for me until I was 70 or 75.
Dr. Friedman is not a quack.
If you read my post again, I did not advise against radiation. All I was trying to do was to help somebody that is looking for an answer. I did not push radiation or surgery. I advised that they contact multiple doctors and people on this network. Make a decision based on good information. I think based on Dr Friedamn HEI and Dr Vrabec in Houston, I am doing the right thing.
I know lots of people here have good results with radiation. I hope it stays that way for your entire life. Dr Friedman was the principal person that changed me into a surgery candidate. He wants me healthy in 10, 20, 30 years.
One of you advised me against the Novalis TX because of its lack of accuracy and cited some data from the Novalis web site. Well if you dig a little deeper, you can find out that it is sub mm accuracy, and that was verified by a radiologist in oncology. All of the information I wrote here is from DOCTORS.
Every one that is new here needs all the information they can get. I based my opinion on what two DOCTORS told me. This is what they advised me about my case. There is nothing personal here. None of this information is my opinion.
(hi James, there were a couple of comments that have been removed but your overall message remains. Thanks for your understanding. Phyl)
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James -
you are right. Dr. Friedman is most definitely NOT a quack.
It's just that all doctors, like all patients, have opinions. Your job is to decide who to listen to.
AN treatment is a personal choice - as I'm sure you've figured out from reading the posts on the Forum.
My doc does both GK and surgery, but try as I might I could not get him to tell me what to do. He felt it was my decision - and he was absolutely correct.
So my best advice to anyone is - educate yourself, talk to as many doctors you feel you need to, weigh the pros and cons of each procedure, and then decide what you are comfortable with and what is right for you.
Making your treatment decision is often the hardest part of the AN Journey, but once you "get there" chances are good you'll find a sense of peace.
Best,
Jan
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So my best advice to anyone is - educate yourself, talk to as many doctors you feel you need to, weigh the pros and cons of each procedure, and then decide what you are comfortable
Stated wonderfully! My hope for all AN patients in researching treatment options. Totally agree. Thanks Jan!
Phyl
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Warning - this will be long.
I have been doing a lot of thinking on the traditional argument of "there is no long-term data available", and I know that this is one of the main reasons that has swayed a lot of people away from radiation. Also it is the main argument for doctors that are completely anti-radiation.
Being a University Researcher (albeit not in the medical field), I have an understanding of how studies get published in the peer reviewed scientific literature. I also have access to all the published medical literature, which I have researched thoroughly.
There are two ways that a research team can get their research published: One is by conducting a large scale study (ideally randomized), which ideally includes two groups of patient, one group treated with a particular mode of treatment and the other with an alternative. Ideally such a study must span many years, and include a large number of patients. One can see right away why this is not always possible with stereotactic radiosurgery patients: Lots of them get lost to follow up, especially if they do not have any complications. During the 1980s SRS was mainly conducted to elderly patients, who obviously didn't have a long life expectancy for follow up. Also, it is impossible to conduct a truly randomized study for obvious reasons. This is why the most extensive study (the one by Pittsburgh) covers data starting from 1986, if I remember well.
The other way that you can get something published is by reporting cases where things went wrong. A single negative outcome that is out of the ordinary warrants publication. Yet, a thorough search of the literature reveals very few, if any, such publications. I was only able to come across two publications by Toronto Western Hospital researchers on a suspected (note the word suspected) secondary malignancy case following SRS. One would have thought that after all these years that SRS has been employed, there would have been a significant number of publications reporting negative outcomes, if they existed. In other words, if there was a serious outbreak of something really scary, it should have been published by now. Especially given that the higher doses used during the 80s and 90s would have been more favourable for negative outcomes.
Dr. Batista, who many in this forum know and is a well respected doctor performing both surgery and GK published a thorough literature review in 2009. I have the entire document if someone is interested. He does a detailed job reviewing the entire previous literature and summarizes complications, nerve morbidity rates etc. Apart from the usual stuff that we all know (i.e. probability of hearing loss etc), the most serious complication mentioned in this review is the (very small) possibility of development of hydrocephalus, which required installation of a shunt. As always, the control rates are reported to be in the 90-95% range. Actually, I was impressed by seeing in this study how many patients required GK AFTER surgery. One could turn the argument of poor control around, and point out how many microsurgical patients have needed follow up by radiosurgery.
So my entire point here is that the "lack" of available data through publications is likely a good thing. GK has been employed since the 70s and if there was a serious outbreak of some sort since then, it would have certainly been published and reported extensively. The fact that no such reports exist is a positive thing.
Marianna
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Brilliant Marianna, Brilliant!!
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I love our discussions here...food for the brain. This is the importance of this network. I had radiation treatment on my tonsils when I was 6 years old. Forty five years later I had my thyroid gland removed because of that radiation. Four and one half decades after treatment, I got tumors. By the time kids like me had been radiated, there were no long term reports about cancer. This was no accident or a one time bad application of medicine...it was considered the proper treatment at the time. I have read the HEI conclusions on radiation, talked with Dr. Friedman at HEI, and at least two other doctors who agree. That is just how I made my conclusion. The fact that you have not read the long term reports yet, is because there aren't any...that is the point.
I am not making any statement about which treatment anyone should receive. Maybe this discussion between us will help some one on the fence. I'm old enough to be worried about prostate cancer, and radiation is number one on my list there.
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James e,
One of the best things to come along in the past few years is the use of Cyber Knife in the treatment of prostate cancer. Just thought it needs to be said.
Bryan
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That's why it is number 1 on my list for prostate cancer...just not on my brain!
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That's why it is number 1 on my list for prostate cancer...just not on my brain!
Which is why you certainly should go with surgery, if that is what you're comfortable with.
As I assume you've gathered by now, treatment approach for ANs is highly individualized and as a support site, we do not endorse any specific treatment or doctor's opinion. We always give due deference for a physicians education and training, but we also know from our collective experience that doctors are not infallible and like all human beings, can develop treatment biases that are not always based on pure science but outdated information and/or a proclivity toward one form of treatment they are familiar with and feel confident about recommending.
That's something that one has to take into account when consulting doctors about treatment. Of course, some AN patients are totally opposed to having surgery and, if their AN is small enough, can opt for irradiation. That's fine. Other AN patients simply can't abide the idea of a tumor sitting inside their skull for decades, even if it's effectively 'dead', and opt to undergo the surgery needed to remove it, once and for all. Again, these decisions are highly individualized. Once made, we support all AN patients treatment decisions. We know (usually from our own experience) that the decision is very often made after much research and certainly, a lot of serious consideration. We respect that, as well as the inevitable differences of opinion that crop up regarding the efficacy of radiation and, just as important, it's long-term effects.
In my opinion, which is all anyone, including licensed physicians, really have to offer, modern irradiation techniques have made radiation treatment quite safe. I underwent 26 ('low dose') FSR treatments to destroy what remained of my AN after debulking and, trusting my doctor and my own extensive research, I never felt any concern about the 'long term effects' (developing cancer cells because of the radiation). I was 63 at the time and I certainly don't believe that I was 'too young' for radiation but if you or anyone else thinks that way in your specific situation, who am I to disparage that choice? I wish you much success and a long, healthy, AN-free life.
Jim
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In my opinion, which is all anyone, including licensed physicians, really have to offer, modern irradiation techniques have made radiation treatment quite safe.
Jim, well spoken, as always :) I had to highlight this comment you made.. as, to me, this is key. James does share about being younger and the type of radiation that he endured... and your comment of how modern medical technology has forged forward. So many in-roads have been made over the years and advances in the medical world have been terrific in many illnesses. I'd still like for them to forge forward in finding cures that still have not been found, but for the advances that have been made.... even the advances in radiation (and not just for AN's, brain tumors, etc) over the years has been terrific.
I'm not saying radiation is the choice... I'm not saying surgery is the choice. I'm with Jim and many others that participate on this site on this one.... it's a highly personal decision and it is up to us, as patients, to do our homework, learn from others that walk our shoes..... speak to as many treating teams as possible to obtain the best info we can so we can make the best, well-informed decision we can make for our own personal situations (and I believe in this, regardless if it's AN, cancer, gyn, etc).
Just my 2 cents..... I ate chocolate... I'm on a roll.
Phyl
(P.S. Marianna... well noted! BTW, you and da bloke need to chat sometime... he use to do the same profession in the UK! :) thanks for taking the time to share what you did!)
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Of course everyone agrees that treatment is a very individual choice and everyone ultimately chooses what they are most comfortable with.
Just for the record in this thread, I wanted to note that "radiation" as applied to cancer treatment, is not the same as "stereotactic radio surgery". The former is applied to a broad area to target as many cancer cells as possible, whereas the latter is very focused. We all know the detrimental effects of radiation (although unfortunately many times it is the only option), especially as applied to children.
Marianna
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James e, In my own quest for as much knowledge as possible I was wondering if radiation was something they were just trying out on tonsils back in the fifties. I had mine out some years later though, but I don't recall anyone I knew having radiation instead of just taking them out.
Also, having gone the radiation route myself I am interested as to how they determined the link between the radiation as a child and the thyroid problems forty years later. IE what to look for.
I know these are some personal questions. If you do not wish to elaborate I would certainly understand. Just trying to gain as much info as I can. Bryan
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Here is two more cents on the question. I wonder what Bob, who started this topic, thinks about all this?
1. You don't have to view the question as one is bad, one is good. It is reasonable to recognize that both have delivered good results for many people. It is more a decision between two good paths, not a puzzle about which path is wonderful and which is terrible.
2. Doctors also disagree about this. At the symposium last August, we all watched as a panel of five distinguished doctors delivered 5 different opinions about the same patient, ranging from radiation, to surgery, to surgery and radiation combined. There is no definitive consensus on the question.
3. If I had had tonsil radiation and later tumors forming, I would have had a different view of doing radiation for my AN. In the end, the decision has to sit well with you, as you are the person who is going to have the treatment and live with the outcome.
Steve
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I swear we have the best moderators in the Universe!! ;D ;)
Sue in Vancouver, USA
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I swear we have the best moderators in the Universe!! ;D ;)
Sue in Vancouver, USA
ah, geesh! *blush* Thank you! :)
I have to note, based on item#2 in Steve's thread above about the symposium and the discussions of AN treatments......
2. Doctors also disagree about this. At the symposium last August, we all watched as a panel of five distinguished doctors delivered 5 different opinions about the same patient, ranging from radiation, to surgery, to surgery and radiation combined. There is no definitive consensus on the question.
It was interesting to see the doctors at the symposium disagree about which treatment option they deemed as best. I sat at lunch with Dr. Weit and Dr. Slattery (boy, it was great picking their brains.... when most of these docs pick our brains! ;) ) and to have this exact same discussion about surgical vs. radiation. I, as a radio patient, wanted to take the opportunity to discuss with them (granted, they found our lunch table... I didn't go searching out their lunch table.... I guess we were the "cool kids" table) their thoughts on radio treatments whereas most of them do surgical procedures. They were more than eager to discuss, what they believe to be the best procedures as its procedures they do (hence, as noted around the forums of "doctor bias".... tout what they do or know).... yet, they seemed opened minded enough to note radio if they felt it was warranted. It was great to have them in a "relaxed" environment (ie: stuffing our faces over lunch) to have them sit back and talk these things with us .... and in our discussions, there was no right or wrong answer.... just professional perspectives based on their AN treatment experiences yet, open-minded enough to hear out the radio discussion (especially since they had a radio "success story" talking with them, ie: me).
I have always noted about obtaining as many dr opinions in this journey (or any other medical journey) to learn, from a medical professional as much as we can (which james shared with us here... and I thank him)..... and to discuss with patient referrals (ie: either obtained through the potential treating facilities or through venues like this forum, etc). To me, knowledge is power in helping to take control of our own well-beings. All we can do is hope that the post-treatment outcomes, regardless of what one chooses, will be good.... and heck, we're all here to cheer on anyway! :)
I had coffee this am..... the caffeine hasn't kicked in yet.
Phyl
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When I use the term radiation, I mean it in a generic sense. I was just a kid when this happened to me. My mother was a nurse, and informed about the modern methods of treatment in the 50's. I can't tell you anything else about the type of radiation. It was done to me several times, and I can remember being scared to death. My tumors were found by a doctor in a routine exam by just feeling my neck glands. There was no physical sensation to me.
I was "this close" to doing the radiation for this treatment, and there are lots of people here that have had great luck with it. There were at least two reasons I chose against it, and I am satisfied with my decision. My wife has been having the same stress I have been suffering with over how to have this treated. Making the choice has been harder than the wonky headed feelings I have. This is a personal choice. Without this forum, I probably would not have made such an informed choice. I'm fortunate to have found a doctor that I trust, and fortunate that I found you guys bouncing lots of ideas around. Food for the brain.
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I think this is the article by Dr. Battista that Marianna is referring to:
http://www.keepingyouwell.com/News/NewsArticle/tabid/191/ItemID/3304/srcmid/71292/Default.aspx
Jan
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Yes, Jan it is. I have read the entire document. It is very thorough, I think it is one of the best review articles that have been published, as it takes into account all the work that has been published previously by many groups, spanning many years and involving a large number of patients.
Marianna