radiation myth? Or fact?

[Joey]

   Hello, here I am again - my neuro Dr. and his nurse are both on vacation, but I'm sure someone here will know.  In a passing conversation with an acquaintance yesterday, I was talking about my AN and the nice lady was asking me how it would be treated.  She also said she used to work for an ENT, so was somewhat familiar, blah blah, you know....  she said "oh, if you have GK, that means you would never be able to have any other kind of radiation for any cancer".....  Whoa.  I made her repeat it, just to be sure I had this right.  Anyone know or care to comment?  The one thing I am learning, fast, is that the world is crawling with misinformation!!  But I had never thought of this.  - Curious Joey  

[cindyj]

Hey Joey,

I'm no expert on this, obviously , but I did ask this question over on the Cyberknife board as I had radiation previously for breast cancer.  I was told that it would not be a problem, especially (or maybe since) it was a different body part.  I'm sure some of the others here will have better, more informed comments about this, though.

Good luck,

Cindy

[leapyrtwins]

Joey -

while I didn't have radiation, I'm not a doctor, and I don't know the answer to your question 100% - this information just sounds wrong to me.

I'd ask your doctor when he's available.

Jan

[sgerrard]

Short answer: myth.

Long answer: there are at least two good answers to this. The first one is that it makes no sense, regardless of the state of radiation treatment today;  the second is that today's radiation is worlds apart from the early days of radiation treatment, when they blasted whole sections of the body at once.

First, the principle reason to limit a person's lifetime exposure to radiation is to prevent cancer. It makes no sense to be concerned about that if a person already has cancer; it is far more important to treat their current disease. "We will let you die of your current disease, because treating you might give you cancer in twenty years" - I don't think so.

Second, with the hundreds of intersecting beams of radiation used in GK, CK, and FSR (stereotactic radiosurgery), the only part of the body exposed to high levels of radiation is the tumor, which is intended to die as a result. For typical AN treatment, the rest of the head receives something similar to having 3 or 4 CAT scans, and the rest of the body receives none. So it is not a problem.

Steve

[ppearl214]

Short answer: myth.

Second, with the hundreds of intersecting beams of radiation used in GK, CK, and FSR (stereotactic radiosurgery), the only part of the body exposed to high levels of radiation is the tumor, which is intended to die as a result. For typical AN treatment, the rest of the head receives something similar to having 3 or 4 CAT scans, and the rest of the body receives none. So it is not a problem.

Steve

Hi Curious Joey,

Agree with Steve (but don't tell him. I have a reputation to uphold! )  Please keep in mind that there are many types of radiation processes and those used in today's treatments of AN's (as Steve noted) are highly targeted beams solely directed to the tumor.  There are many types of radiations used for many types of cancers (if you do a "Search" here, I believe it was Mark that did a thread a long time ago re: the technical aspects of radiations and those used today in head tumor treatments.......)  Honestly, chances are very minute that your AN would become malignant post-treatment (there are recorded cases but the chances are so low, I have a better chance of getting hit by lightening vs. my AN turning malignant).  Yes, it is all part of the risk we take in choosing radiation as our AN treatment option, but with the high success rates of today's radio-treatments for AN's and the low counts of malignancies post-treatment, it was a risk I was willing to take... and now, 2-1/2 yrs later, I'm glad I took that risk.

You will know what will be best for you and your particular situation.  Go with your "gut" and know we will all be cheering you on.

Have a terrific (and safe) holiday weekend!
Phyl

[leapyrtwins]

Thanks for the clarification, Steve - and the explanation of why it's a myth.

Jan

[Joey]

Yes, thanks Steve, and everybody for responding, I knew I'd find a calm, collected, no-nonsense type of answer here.  Which totally does make sense, doesn't it?  It's just interesting to me, all the pre-conceived notions people have about what we AN'ers are going through.  Another friend believes that I am going to lose my hair.  I haven't said much to her, but I'm going to let her be pleasantly surprised when I manage to keep it!  This site is invaluable and I have learned a lot in a relatively short time period.  Another question, more in a general sense, and I apologize for topic-hopping - is this:  right now, my facial nerve seems relatively good and unscathed.  I only notice some tingling, twitching, eye watering on that side- and other weird stuff occasionally, not much, and only when I'm tired.  Will GK cause these symptoms to intensify?  Or is that a definite "maybe"?   By the way, Dr. Link told me I had a better chance of having a car accident on the way to Mayo - than I did of having the Thing turn malignant post GK, which put it in perspective.  Thank God for modern technology, I am going to do just fine.  All of you kids, have a good holiday, and yes, be safe!  I'm off work soon and will be going home to bond with my husband and the twins (ok, they are poodles....)    Joey

[leapyrtwins]

I'm off work soon and will be going home to bond with my husband and the twins (ok, they are poodles....)    Joey

Joey -

sometimes I wish my  twins were poodles!  Less back talk 

Sorry I don't know the answer to your GK answer, but someone will I'm certain.

Jan

[sgerrard]

Radiation does not cause permanent damage to the facial nerve very often, the nerve seems to be resistant to that. Radiation can cause swelling during the first year or so, and that can include some pressure on the facial nerve, and some of the fun facial nerve symptoms. So you get a definite maybe on that. Steroids help if it gets bad, and it usually clears up with time.

Twin poodles or twin children - tough choice. 

Steve

[Kaybo]

Jan~
I don't know...when I had a 10 week old baby girl and a 10 week old puppy, the PUPPY was much more demanding of my time & energy!  Maybe it switches as they grow and the human babies can TALK (back!)...

K   

[Tumbleweed]

right now, my facial nerve seems relatively good and unscathed.  I only notice some tingling, twitching, eye watering on that side- and other weird stuff occasionally, not much, and only when I'm tired.  Will GK cause these symptoms to intensify?  Or is that a definite "maybe"?   By the way, Dr. Link told me I had a better chance of having a car accident on the way to Mayo - than I did of having the Thing turn malignant post GK

My understanding is that the facial nerve may become irritated by being exposed to radiation during treatment, and that may intensify any facial symptoms you currently have. Dr. Chang put it to me this way, when I asked him if my symptoms would become worse or if I'd have additional symptoms as a result of getting CK (which is similar to GK): he said I might have my current symptoms (disequilibrium, tinnitus) get  worse, but was unlikely to have other symptoms I was no longer experiencing (such as the vertigo I had years ago) reoccur because of my treatments. If GK does intensify your current symptoms, it very well might be transitory. Many people on this forum have related how some of their symptoms got worse for several months up to a year or so, and then went mostly or completely away. The exception is hearing loss, which in most cases (if it occurs at all) is permanent; but again, some posters have reported their hearing improved after treatment or temporarily got worse and then recovered. My tinnitus has definitely lessened since getting CK.

As for an AN becoming malignant due to receiving radiosurgery, statistics show that the risk of this happening is virtually no greater than that of the general population getting a malignant tumor. You have no reason to worry about this.

Best wishes,
Tumbleweed

[leapyrtwins]

Tumbleweed -

hijacking this thread momentarily to ask how you are doing.

Jan

[Tumbleweed]

Tumbleweed -

hijacking this thread momentarily to ask how you are doing.

Jan

Thanks for asking, Jan. I'm doing much better! Started feeling my energy rebound dramatically 4 weeks post-CK. Began hiking again 9 days ago. Did a 5-1/2 mile hike yesterday and am going out again today, which thrills me to no end. 

My balance is about 20% worse than before I got treated, but I'm hoping/assuming it will recover sometime in the next year or so (based on similar developments reported on this forum by other posties). My hearing seems unchanged, except that my tinnitus has actually decreased. I'm sleeping great again and am feeling less fatigued during the day; I can work full-time without getting tired but physical excercise is still a challenge for me (I get short of breath and very tired when hiking uphill, but I don't let it stop me!  ).

Best wishes,
Tumbleweed

[hruss]

Joye,

i would like to share what my docs explained to me about radiosurgery.

After my second surgery, (see me signature) my docs here in Bulgaria told me that they could not do more since they are afraid of severing my facial nerve - my AN was HUGE and was bleeding a lot during the two interventions.

However, having them explained to me about the outcomes of a radiosurgery i decided not to go with this option. I had a consultation with another doctor too and he confirmed to me that further debulking is the only way since a good part of my tumor (like half of it or more) is still in and being radiated can only affect the surrounding healthy brain structures.

(giving you my doctors words only; i am not a doctor) So watching videos on how different machines (Gamma Knife, Cyber knife or FSR) work i noticed that people over 60 undergo such a procedure (i don;t want to offend anyone here, but it is different when you are 25, right? )

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

 

[leapyrtwins]

Tumbleweed -

thanks for the update.  It sounds like you are doing very well.

I'm glad CK turned out to be the best choice for you.

Jan