radiation myth? Or fact?

[ppearl214]

Plus, since i have a large tumour from one of the centres i contacted (in Moscow, Russia - it is a Proton therapy institute) they answered they would use around 26 times to radiate me - I mean through this type (i think it is a FSK type of radiation they give small doses of radiation prolonging the procedure rather than you having the radiation at once as is the case with Gamma Knife). As far as I remember wasn't that the ultimate radiation a human body can obtain?! So i am expected to have no radiation treatment till the end of my life! (I am not very confident in what i am saying about the amount of radiation one can have, so please correct me!)

It is all good but having a rather big part in i think that my AN  won't be killed but rather swallowing after the radiation would put a lot of pressure on the surrounding parts, like the brain stem. Furthermore, having a big tumour leaves with less chances for the tumour to die, and it may continue growing, which makes any future surgery very very risky and more difficult.

Plus having your tumour over a certain size also restricts you to undergo radiation. Look in Steve and Phyl's signatures, radiation was not a problem for them since their tumours are very little.

The bigger the tumour, the more complications you can expect.

If anyone can put more here, I would highly appreciate your answers, virtual friends!

Best wishes to you in your journey, please do post about further development in your search!

Hrissy

 

Hi Hrissy,

You are fairly close, from my understanding. Yes, mine was small, but I'd like to reference Mark, who had CK over 8 yrs ago (if my old brain remembers correctly) and his AN was over 2cm and his is dead and he's doing great.  You are correct that there are size limitations for radio to be an option (usually/typically around 3cm is the cut off point).  Typically, the brain stem should also not take more than 10-12Gy of radiation and the treatment centers try to limit it to that amt to make sure surrounding structures take as little radiation as possible.  Now, for CK/GK/Trilogy, etc, these are highly targeted beams, thus, its not the same kind of radiation that, say, a cancer patient would get.  If needed (gawd forbid), I can have radiation for cancer regardless of having CK on my AN.  I can be re-CK'd (again, gawd forbid!) on my AN if necessary. I know of someone, recently, who had a 2nd round of CK on brain cancer (definately not an AN situation) and has had surgeries.

In many respects you are correct and I hope what I elaborate helps.

Be well, as always!
Phyl

[hruss]

Thank you for the elaboration, Phyl!

So as far as I got it the fact that you had a Cyber knife treatment does not mean that you can never ever in your life have any radio treatment, right? Is it so because you had a Cyber knife? Would this apply if you had Gamma knife treatment? How many treatments did you have? Why did you choose Radio surgery and not let's say Middle fossa traditional surgery approach?

I was told by my doctors to have a radiosurgery after the two partial surgeries but when i had a consultation with another doctors they warned me of the reallly good part left in and by the high risks of having my healthy tissues getting radiated (just because the size of the AN left was considered big for radiation)!
I wil have my 8 months pos op MRI next week with contrast and they will be able to measure the exact size of my bugger. I suppose it is growing because for the past 3 weeks i have vertigos and they are getting stronger   

Hrissy

   

[ppearl214]

Hi Krissy,

glad to help!

Since I did opt for CK, I can have other radio-treatments (gawd forbid) if needed.  Yes, because I had CK.  I believe it also is the same for those that opt for GK. There have been posts here (I believe in the radio or "archives" forums) about the technical aspects of these protocols and it further elaborates about the type of beams used vs other radio therapies.  I think Mark did a full on thread about it. It may be worth a "Search", if you are interested.  Why did I choose CK vs. microsurgical?  Oy, tough, long question for me to answer but I'll try to be brief.

I have many other medical ailments.  The first part of my decision process was (for me), did I want to go "invasive" vs. "non-invasive".  In my case, due to other issues, I opted for "non-invasive".  Thus, it boiled down to radiosurgery. Then, for me, the decision had to be made... which form of radiosurgery? Oh, did I do my homework on that one!   Due to some of my research, which included personal consults with multiple radio-treating docs in Boston... and speaking to other docs familiar with the radio-protocols... and speaking directly to multiple radio-patients that already had their treatments, based on my personal goal to save my hearing... I took all the info/data I gathered, did a "pro/con" list (on paper, which, for me.. to see it visually, helped me to really "see" what choices I had)... sat back and made my decision for CK.

I think the key, for you, will to be to get the current size/dimensions of the residual that you have... and it's exact/precise location.  Once you know that, then, to me... you can sit back and start figuring, based on what's available to you in your location (unless you are looking to travel) what will be best... and you know, regardless of what you do...we'll be cheering you on.

Hope this helped.
Phyl

[hruss]

Thank you for the promp reply, Phyl! 
In a week I wil try this pro and con list 

Hrissy

[mk]

Hi Hrissy,

I wanted to pointed out that from your post I noticed that your consult in Moscow was for proton therapy. From what I have read proton therapy may generally have more side effects.
I think that you might want to consult with another centre that does other forms of stereotactic surgery (CK, GK, FSR etc.). Remember Jim from this forum, who had excellent results with a combination of surgery/FSR.

Marianna