ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Sandrawoody on January 29, 2014, 03:00:45 pm
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It would seem from my research, that doctors are less inclined to use radiation in younger patients,due to post radiation risks further down the track. Can anyone give me some clarification around this ?
At what age then do they feel it is a safe treatment option ? . What are the long term consequences of this treatment ?
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If it's not a safe treatment option , they wouldn't recommend it at any age!
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I don't believe there are any facts to prove that there there are any post radiation risks. Maybe there are, maybe not. Surgery has risks and possible repercussions also. There is no way to tell what the future holds. One can only trust that he or she can be guided to make the correct decision.
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Keep in mind that there are some differences of opinion on radiation. I am no expert, but I think some (not all) doctors feel the long term effects of radiation are not well enough documented. Doctors also favor what they are comfortable with. I had 4 doctors propose surgery due to size, then the 5th proposed Gamma Knife. If you are interested in radiation, go to doctors who do a lot of it like Dr Chang at Stanford, or Kondziolka at NYU, or Lunsford at Pitt. You may hear different than you have heard so far.
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I am 45 yo and rec'd a third consulation on Monday of this week with Dr. Lambert at MUSC. He suggested either radiology or translab approach for my cystic 2.5cm AN. While he called me "young", he did point out studies are only about 20 years old for radiation. I'm personally not leaning toward radiation because of that. Best wishes whatever you decide to do. :)
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I was told that age is taken into consideration for radiation, not so much for the possible long term risks of the radiation, but because the tumor is supposedly slow growing so older people (relatively speaking) are more comfortable with just arresting the growth of the tumor and not risking the complications of surgery. But there are other factors to consider: size/location of the tumor and hearing preservation. I'm 55 (going on 25) - in great health generally. My AN is was 1cm and I still have my hearing. I went for the fractionated radiation (4 sessions). I probably would have done the same if I really was 25.
The best advice I ever got was from this forum that said to research as much as you possibly can, and once you make a decision, don't ever second guess it - just keep moving forward and stay positive.
Best Wishes,
Ruth
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I don't think there is any magic age for too young for radiation.
Having said that the last radiosurgeon I went to told me that he would do GK for me if that is what I wanted but he recommended microsurgery.
It was a combination of age, 43, and size of the tumor, almost 3.0 cm, that drove his advice. Since my tumor was right up against the brain stem that was a concern and the doctor told me that while GK is very, very precise there was no way to guarantee that only the tumor would be hit by the radiation. He was concerned that 20 years down the road he could not guarantee that I would not have issues if my brain stem did receive some radiation during the treatment.
I guess my point here is that there are at least two factors to think about: your age and the size of the tumor. The younger you are or the larger the tumor, the scale probably shifts to surgery. The older you are or the smaller the tumor, the scale probably shifts to radiation.
A third factor would be your overall health.
Best wishes,
Ken
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I had heard this age reference myself, but I could not understand how "younger" meant "don't do radiation." When I posed this question to Dr. Lunsford at UPMC, he said, "You want to do radiation when you're younger to make sure you get to be older."
Granted, that's only one doc's opinion. But he's been doing GK/radiation procedures for over 25 years now and those individuals he performed GK on 25+ years ago are still going strong.
Do we know what will happen to them tomorrow? No. But we don't know what will happen tomorrow to any of us. And even with surgery, we don't know what will happen tomorrow.
Educate Thyself. Think. Listen to your head AND your heart. Eventually, you will know what to do.
(Disclosure: I chose to have GK at the age of 47 and was also told I was 'young.' Bless.)
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The smaller the tumour the less radiation you get, it also means treating a small tumour with radiation you are less likely to have malignant transformations.
Malignant transformations are rare, so rare they are unable to work out the risk level..
So the risk is low. But nobody quite knows how low. Is it 1:100 at 50 years or 1:10000.
To confuse the issue there have been rare malignant transformation after surgery too.
Some people also have a predisposition for cancer, and are at a much higher risk of complications and malignant transformations.
About 50% of people that have had malignant transformations of ANs after radiation had NF2.
People with NF2 are at higher risk of developing all sorts of cancers.
It may well turn out that a small portion of the population have a 10% chance over 50 years of getting cancer from the treatment. While the risk maybe negligible to the bulk of the population.
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The neurosurgeon I consulted with in Dallas who is considered well respected 30+ years has never seen a radiation induced cancerous tumor. I only tell you what I am learning. I am not a doc....right.
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As far as ANs go, age and radiation aren't really an issue anymore; that's old school thinking.
Generally passed along by docs who don't do radiation for ANs.
Because they don't do it, they don't know any better, and they oftentimes give opinions based on myth not fact.
Also, if a doc treats ANs surgically - and doesn't do radiation - he/she will tell you that age is a factor to try to convince you to have surgery. Surgery is their preference, they won't tell you to have radiation. Just like a Ford salesman usually won't tell you to go buy a Honda ;D
Jan
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Here is an excellent site that should be part of every AN patient's research:
http://www.myacoustic.org/choosing-treatment-for-acoustic-neuroma.html
The author was 34 years old at the time and he basically left no stone unturned in his quest to find the proper AN treatment for him. He has done what most of us would like to do but, for whatever reason (time, cost, etc), can not. Old tales die hard and his story is a perfect example of how old and antiquated concepts persists. The site is extremely informative and mirrors what many posters on this forum have already found out - doctors tend to be very biased in their recommendations when they are not multidisciplinary (able to treat a condition more than one way). Having a 30, 40, or longer year history is ideal for a procedure but not having such a long track record should not be reason to avoid it either because the latest and greatest in technology will most likely not have that luxury or advantage of time. Hence, just because an AN patient is in his 30's, radiosurgery should not be automatically eliminated as a treatment choice as is commonly done. The author has shown this in his AN story and is excellent reading for anyone beginning their AN journey. I stumbled across this site soon after I was diagnosed and it helped me tremendously in deciding what treatment to follow.
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John,
I read this too and it helped me choose CK at Stanford this time around. I wish I'd seen it back in 2011 when I was first diagnosed. I would have gone with CK even with my 3.2 cm AN.
Rose
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It's been so long I forgot my password. :o
Personally, I don't think it would be fair to the patient for an oncologist to say radiation is 99% safe. I believe younger patients should be a little extra cautious with their decisions. Radiation is fine if you know for sure it's best for you. This could take plenty of time and research. I don't think any risk regarding radiation should be dismissed no matter how small it seems right now. For example look at radon. Homes with high levels could have a negative impact on health many years later. After all these years radon is still viewed as a threat. I believe it depends on the person too. Some people are just more prone to cancer while others smoke three packs a day their entire lives. My father passed from cancer so maybe I am more prone to get cancer. I remember them asking me if anyone in my family had cancer. I had surgery exactly ten years ago today. Surgery was extremely tough on my mind and body. Many years have passed and I'm dong fine. My only message is that "time does heal!" The other day my mother jokingly said to me "you should have just left it in there". Maybe she's right. Instead I responded "then I would be having surgery or radiation today". Point being that action is eventually needed. Radiation has become a blessing for many over the years and if I required action for a regrowth this would be my course. However, for a doctor to blow off any chance of a negative impact many years down the road at the very site or elsewhere within the body would be downright wrong in my opinion. Follow ups happen over many decades and many people die from other causes or disregard follow-ups altogether. People move and doctors as well. I don't think this site has been around long enough either to say anything for sure. How many treated people prior to this site are actually on here or even registered? Again, I'm not saying radiation is a bad choice. I honestly believe it's a great choice. Even if something did happen many years down the road most people will have something else to deal with beforehand anyway. Here is a study that I found for what it's worth. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3023338/