Long term affects of GK

[tatianne]

hi everyone,
a neuro has told me that he doesnt really sugest GK in younger patients (Im only 31) because it could have long term side affects....
Has anyone been told this also
What side affects could occur and how common is that ??
Im even more confused.
Tatianne

[macintosh]

Tatianne--

I'm going to enclose several excerpts here on these questions. One is from an article in the Nov. 2006 Journal of Neurosurgery by Dr. William Friedman at the University of Florida, and a longer one from the University of Pittsburgh neurosurgery site

From Dr. Friedman:
The issue of malignant tumorigenesis recently has been the subject of much discussion. It probably exists but at a frequency much lower than the risk of a serious complication from open surgery.

From the University of Pittsburgh:
When we evaluate patients with acoustic tumors, many ask the following two questions.

   1. First, is the tumor more difficult to resect if radiosurgery fails? The answer to this is not clear. Few patients have required resection, and the opinions of the surgeons we have asked indicated that some tumors were less difficult, some about the same, and some more difficult. In a report on this issue that included thirteen patients who had resection after radiosurgery, eight were thought to be more difficult. However, five of these eight patients had failed resection before they had radiosurgery.

   2. Second, patients inquire about the risk of delayed malignant transformation. Malignant schwannomas are rare, but have been reported de novo, after prior resection (34), and after irradiation. We answer that this is always a risk after irradiation, but that the risk should be very low. We have not seen this yet in any of our 5,400 patients during our first 15 years experience with radiosurgery, but quote the patients a risk between 1:1000 and 1: 20,000. We reported one patient with a malignant mesenchymal tumor of the cerebellopontine angle that resembled an acoustic tumor (36). One report from Japan found a malignant tumor four years after resection, and six months following radiosurgery. The time interval after irradiation was too short to be causative (34). A second report noted the development of a temporal lobe glioblastoma 7.5 years after radiosurgery for a nearby acoustic neuroma. The temporal lobe had received a low radiation dose (35). In contrast, we have a patient who had initial management of a frontal lobe astrocytoma, and years later developed an acoustic neuroma. Was the development of these tumors related in some oncogenetic way, or were they radiation related? We believe the risk of developing a tumor years after radiosurgery is much less than the risk of mortality immediately after a resection, and likely less than the risk of the patient developing another tumor on their own in another body location.

[tatianne]

thank you for your response, i really appreciate you tking the time to share and type out all of that.
why does it still sound so scary

[macintosh]

Actually, the second one was cut and paste. My two cents worth is that age has nothing to do with which treatment method you choose. I had radiosurgery in January(age 54), and so far everything is fine.

[Jim Scott]

tatianne:

For what it may be worth to you:

As my signature shows; at age 63, I had microsurgery followed by 26 FSR treatments - with almost no problems.  Of course, there are never any guarantees with AN procedures but radiation is apparently pretty safe, all things considered.  I wouldn't take one local doctor's personal opinion as the definitive word on long-term risks of the Gamma Knife procedure.  While he is very likely sincere, he is mistaken in his conclusion.  The research doesn't support his opinion.

Jim

[Walter M]

hi everyone,
a neuro has told me that he doesnt really sugest GK in younger patients (Im only 31) because it could have long term side affects....
Has anyone been told this also
What side affects could occur and how common is that ??
Im even more confused.
Tatianne

Titianne,

I'm only 35 and had radio surgery (LINAC, but comparable to CK) just 7 weeks ago. In the three or four month before, when I found out about my 2.1 cm AN, I did a lot of investigation. My local ENT referred me to a dr that is specialised in surgery and does not do radiation. He wanted to do translab surgery.

I was smart enough to search on the internet and found enough information about treatment options here in Holland, to determine I needed a second opinion from someone who was specialised in radiation therapy. From all the cons and pros I found there was not a single one in favour of surgery:

1. Both have about the same succesrates (Regrowth on even believed total removals equals further growth after radiation (few percent))
2. The chance of not surviving the complications of surgery (even possible on smaller ANs) is far greater (0.5 - 2%) than the radiation causing malagant tumors (beleived to be much smaller than <0.1%) in the long term. Pick your choice.
3. Complications after radio surgery are less seen. With GK, there is a very, very small risk on facial weakness and permenant problems are about non existant with the lower dose of 12 GY.
4. Eye problems rarely occur in CK
5. Recovery after radiosugery is very fast. Some even go to work the next day. In my case it took about a few days to be back at work (also because of the steriods), whereas after surgery you will need 4 - 6 weeks on the average, if the other complications allow you to.
6. Fatique, seems to be present with both.
7. Headaches, seem to be more frequent with surgery
8. Tinitus with radiosurgery, at the least seems not to be worse than surgery.

For furter information, please look at http://www.anarchive.org/

All in all I think I made the right decision. My life is fairly back to normal, except for the fatique, but that was already present before treatment. Not much changed post treatment.

There is no doubt in my mind that MOST people are best helped with radiosurgery rather than normal surgery. Less risk and less complications. For the ones with larger tumors (>25 - 30mm) debulking followed with radiosurgery seems the future. Though there always be place for surgery, I think its role in ANs is getting smaller and smaller. If you decide for surgery, be sure you get the best of the best surgeons. Your head is not a learning target. If you can't get those, I'd certainly opt for radiosurgery and ignore the comments of your age. I'd be happily trade 10 years of my life for good quality rather than suffering from the dramatic consequences surgery performed by less experienced surgeons can cause. After all you're only 31 and too young to be disabled for the rest og your life.

Walter,

[jtd71465]

T-

Unlike Walter I wasn't smart enough to research on the internet (sarcasm) and had surgery done during the first part of January.  I had no complications and unlike Walter I have more energy now then before surgery.  I'm wondering if Walter would trade 10 years of his life would he trade 15 or 20. 

Please note that no procedure as good as it may sound is the silver bullet for an AN.  I had surgery and I've done great, so have may others before me and many others that will follow me....

If you have any questions regarding my surgery please send me an email and I will gladly discuss. 

Joe-

[Walter M]

Joe,

I'm glad everything went well for you, and one should never doubt his decision. The main point I was trying to make is that there is abslutely no prove for less quality or even lenght of life after radiosurgery. I've seen the statistics of complications and quality of life after surgery and they did scare the hell out of me. CK has been here for 30 years and there is enough published info on this type of treatment. It there is beyond me why surgeons still scare people with things like risks of radiation. There is simply no published statistic that backs up this suggestion. Again see www.anarchive.org . The simple fact that not surviving the consequences of surgery is much higher than developping a malagant tumor in the long run (of which a small number have been reported after both surgery and radiation) should say enough in itself.

IMO, (yes I'm opiniated, but informed), your risks and reduced quality of life are much more at stake with surgery than with CK. Esspecially with surgery you are depended on the skills of your surgeon. If you can't get the best there are, I'd seriously look at alternatives.

But this all does not mean, that the outcome of both could range from excellent to serious disabilities or even death.
Bottom line, is that any new patient should be informed as best as they can to make a suitable decision. The internet is a valuable media in this respect.

[Walter M]

Oops, I mean to say GK (Gamma knife) in stead of CK (Cyber knife)

[tatianne]

thank you Walter for your honest and detailed opinion. Its obvious that you have really done your research on all this.
Ive come to realize that the best gift I can give myself right now is to become as informed as I possibly can.

This is a response I received from a doctor on the cyberknife message board. My question was in regards to the complications or long term affects of radiation. Thought you might be interested:




      Posted 4/14/2007 2:38 AM (GMT -8)     
I don't know what the neurosurgeon had in mind regarding late problems after radiosurgery. There is about the same control rate with surgery and radiosurgery (approximately 95-98%). Surgery does not always remove the entire tumor, unfortunately. There have been very few problems with radiosurgery as a late complication, the major one being hearing loss. We do see some balance problems in some people, but they generally resolve over time and do not occur in the majority of patients. Many patients on this board complain of fatigue, but from a VERY limited survey we conducted it would not appear that there is a great difference between Cyberknife, Gamma Knife, and surgery. Surgery gives a greater risk of hearing loss, which can be up to 100% depending on the approach. It has a risk of about 10% CSF leak and 3% re-operation to fix it. It is not absolutely clear, since the data is somewhat limited at this time, but it appears that Cyberknife may carry about a 10-15% greater chance of preserving hearing.

Don't fall into the erroneous assumption that if you have surgery all is taken care of and there is no further chance of problems. You will require follow-up either way. In our area, virtually all patients are treated with radiosurgery. The ENT guy who used to do all the surgeries with the neurosurgeons has now applied for radiosurgery privileges.


--------------------------------------------------------------------------------
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org or cmedbery@coxinet.net

Clinton A. Medbery, III, M.D.
   

Ive come to see that alot of us seem to fear radiation, maybe it just seems to easy.
I know that I have three children and I need to have the quickest possible recovery.
To be honest the only reason I tend to lean towards surgery sometimes is because it seems more final, the little creep is out of there....


Joe,
thank you for responding as well.
Its really great that u came out of your surgery so well without any important complications.
Can I ask u what made u decide that surgery was the choice for u
How was your recovery
I read about so many of you who choose surgery and I have great admiration and respect for your choice because frankly Im scared, Im afraid to face the possibility of surgery.

[Walter M]

Hi tatianne,

I agree that the term radiation goes along with fear of developping cancer or other negative effects. However reality is that esspecially stereotactic radiation (like gamma knife, FSR, cyberknife and other variations) are very low risk in this respect. Only the tumor receives a higher dosis of radiation and not the surrounding tissue.

Radiation is a very common procedure in the medical world for treating cancer and that might draw a link to something that is a 'last resort' option. However there is a huge experience with radiation treatment and the results of it are well known and documented. As you said, the best gift you can give yourself is to let you inform as well as possible. Personally I would not be scared of any argument about developping cancer from this. The facts of over tenths of thousands of AN radiation treatments just don't confirm this.

But of course, it is your decision... I only can advise to make an informed decision ...

[Sam]

Tatianne,
I am 35 and had GK in December, 2006. Read my post on "Radiation Exposure" it may ease your thoughts.
Sam

[pearchica]

Tatianne: I was much more worried about the short and long term affects over surgery then I ever was about radiation.  For me it was the "invasiveness" of surgery period that had me biased from day one to seek out other possibilities.  I am almost 3 months out from cyber knife and I feel fine.  I also think the odds are in my favor for the long term outcome (98% chance that the tumor gets killed).  But then I had a lot of support from family and friends and this website to keep researching all the options.  Good luck with your research and keep us posted on your progress.  Take care, Annie