Newie

[ghenier27]

Thanks again for all the replies. I guess I have just as much fears with radation as I do surgery. My Dad had radation therpy for his prostatic cancer. It was not a very good outcome FROM the radation. The radation made his insides like tissue paper. Now, every time he bents over, turns his waist- he starts bleeding from the insides and has to be rushed to the er. While they have to do mini surgeries on him to stop the bleeding. His cancer also came back after 4 years. Seeing him now after all that he has been threw, it has a very negetive opininon on radation therpy. Ideally, he would have been better to have choose the surgery or done nothing at all than the radation.

[nteeman]

For those of you that choose the radiation, I would like to know why and don't you worry about the chance of cancerous cells growing back?

Because I talked to a radiation oncologist, who specializes in radiation, not just a surgeon who has heard of it and doesn't like it. 

The figure you read might be the average for a wide range of radiation treatments and a wide range of tumors, but it is certainly much too high for ANs treated with stereotactic radiation. 1 in 2000 is a more realistic number. Besides, you can't base your decision on a 0.5% or less possibility anyway, you have to focus on the 99.5% probability. When you get into the small possibilities, something could go wrong with any treatment.

Radiation appealed to me because it was less invasive, had a low chance of a side effect like facial paralysis, and had a good chance of controlling the tumor and saving some of my hearing. So far so good.

Steve

It strikes me funny that everyone considering radiation is worried about the risks of it producing 'cancer cells'  while every doctor I consulted with, surgeons, radiologists, GPs, internists etc. have all told me that it is not a considerable risk for cancer, BUT most have commented that they would be more concerned about early onset dementia, yet it seems that everyone that is considering some form of radiation only considers the cancer risks.  ??

[mk]

Radiation therapy for cancer is much different than stereotactic surgery. Radiation therapy for cancer is not accurately targeted on the tumor, as the surrounding tissues must be radiated as well to contain the spread of cancer. Thus the nasty side effects that your dad is suffering from (similarly chemotherapy does not only attack the cancer cells, but also the healthy cells). Additionally, because it also targets healthy tissue, the risk of further radiation induced malignancies is higher.

Stereotactic radiosurgery intends to deliver precise doses targeting only the tumor, while avoiding the surrounding healthy tissue. This is why it is more suitable for benign tumors, that are well defined in shape and contained. So there is no comparison whatsoever. Many physicians who are not familiar with stereotactic radiosurgery inadvertently scaring patients away from it, because they only know about conventional radiation.

Marianna

[ppearl214]

Thanks again for all the replies. I guess I have just as much fears with radation as I do surgery. My Dad had radation therpy for his prostatic cancer. It was not a very good outcome FROM the radation. The radation made his insides like tissue paper. Now, every time he bents over, turns his waist- he starts bleeding from the insides and has to be rushed to the er. While they have to do mini surgeries on him to stop the bleeding. His cancer also came back after 4 years. Seeing him now after all that he has been threw, it has a very negetive opininon on radation therpy. Ideally, he would have been better to have choose the surgery or done nothing at all than the radation.

There is a good chance that the type of radiation that your father had was different to many of the radiation options available for AN's (although Cyberknife is doing great work recently on prostate cancer).....   As with any treatment for any ailments... risks are there... and I know you are looking at all options... and absolutely, must weigh out all risks.

For me, I sat down, with pen and paper and did a Pro's/Con's list for treatment for my AN (as well as other ailments I have)... and it helped me to see it stare back at me... whether it was weighing out surgery or radiation for my AN..... I know you will do what is best for you, your situation (ie: location, AN, finances, personal life, etc).  You will know when it comes to you.

My wellness wishes to you... and to your dad.
Phyl

[sgerrard]

I can only guess, but I imagine that if my dad had been through that, I would not want to do radiation either. As pointed out by others, radiation for ANs is a very different kind of radiation, but at some point your own feelings about it come into play. You have to believe that you are making a good treatment choice for yourself.

Neal, I had not heard of early onset dementia being discussed with regard to radiation. Do you have any more on that?

Is this why I find myself knitting hats all the time? 

Steve

[anissa]

Welcome to our "little" support group, like others have said I'm sorry you had to find us but I'm so glad you did!  I just want to repeat what others have said, research your options and make sure you talk to doctors that specialize in their treatment, each will have things to say about the other's form of treatment.  In my opinion there are risks to all treatments, you just have to find the one that feels best to you.  You'll know what the right thing to do is when the time comes to decide.  I know it sound weird but its true. Ask lots of questions, I would have been so lost without the people here.

I had a 2.1cm AN and had it surgically removed in April.  I am single-sided deaf (SSD) and have minor balance issues with practically no facial weakness.  I'm doing all that I was doing before and possibly more. 

[sgerrard]

Did a little follow up myself on radiation and dementia. The phenomenon is associated with "whole brain radiotherapy," which one article refers to as WBRT. Most of the negative things said about radiation pertain to large area exposures, such as whole brain radiation, and don't apply at all to focused stereotactic radiation, as used on ANs. This looks like another one of those, right along side cancer risk.

Steve

[ghenier27]

Many, many thanks to all my new friends on this board!      I go to see the Shands ear specialist on June 24th and after that visit, I am sure that I will be back with a new post. You all are right, I do have to be the one who decides the best treatment for me. I guess, I just didn't want to look down the road and wished that I had of choose a different treatment plan.

Silly question but does the different types of radation therpy make my hair fall out?

I hope everyones weekend is great one. Feel free to chat with me anytime. Debi

[sgerrard]

Silly question but does the different types of radation therpy make my hair fall out?

Nope. Sadly it does not make bald spots fill in, either. 

Steve

[bell]

Hi Newie:
I am 6 months post op from retrosigmoid, Mayo.
I decided surgery because I am 46 and healthy and I just wanted it out! 
I lost hearing and have facial and eye issues that I did not expect.  It has been a long six months but weeks get better and I look forward to the year mark.
It is a tough decision and everyone has different reactions.  The best of luck in your decision.
Bell 

[grega]

Oh Steve, we can only wish, huh? 

Is that how your hats got started?

[Keri]

haha greg!

[grega]

Good luck Debi with your decision-making .... you'll make the right choice .... with a lotta help from those reading and responding.

Bell, best to you as you improve .... and hoping that each week is better and better!

Keri, thanks for the    but since I joined this forum very recently, I've never heard how Steve's hats got started.  Perhaps (1) it's cool in Portland and the need was great .... (2) it's AN-related and the need was greater ..... (3) it really is his bald spot .... and the need was greatest    ( I know that feeling Steve!)  But I'm not pressing the issue to find out.  They look great on all those who wear them.

Also, glad to hear ( in another thread) that you're running again. 

Greg