Age related radiation question from newbie

[ppearl214]

have to concur with Dana (great post!) and Mark and all the "dittos".... (hi Jan! ).  IMO, regardless if right or wrong..... life is filled with risks.... the stock market... home purchases.... walking across the street... playing golf in a storm (bad move, very bad move)...... When I met initially with my docs, they have to make sure that they note all risks to cover their derrieres....."CYA" if you please..... but when I sat back and weight out the risks... and all other risks in life that have a higher probability of occuring, chances of malignancy of the CK treatment was so minimal that, for me, it was not a deciding factor.....

Dana, btw, the link/URL is:  http://www.cyberknifesupport.org/forum/

Just wanted to share my thoughts... I had coffee this am

Be well, all!
Phyl

[Anna7]

Reassuring feedback from everyone, thanks for putting the risk in perspective for me.  You're so right, risk is inherent to everything in life.  What matters most is which choice is best for me at this moment considering my circumstances.  I'm looking forward to my Cyberknife consultation next Tuesday at the Newport Diagnostic Center in Newport Beach, CA.  As I mentioned before, when I called Stanford they referred me to this more local alternative and I quickly set up an appointment.  Then yesterday, while I was at work, Dr. Michael Chang called me from Stanford.  Although I had e-mailed him I never actually expected that he would contact me directly.  He was so wonderful and took quite some time explaining things and answering all my questions.  I'm so grateful for this forum and those of you who take the time to help pre-treatment AN'ers like myself.

[leapyrtwins]

Dr. Chang @ Stanford is one of Steve's docs - that in itself is a good recommendation since Steve seems to be very happy with his treatment 

Good luck Anna.

Jan

[Sue]

Hi,

Hope it's not too late for my 2 cents worth!   I had Gamma Knife and although I will strongly oppose the term "elderly", I will concede that I am a "mature woman" and I am also willing to concede that my neurosurgeon's probably weren't too keen on surgery for me, so strongly suggested I was an ideal candidate for GK.  Now, my doctor said that the preferred treatment for AN's depended on what part of the country you lived in, the doctor's choices and what the hospital's had to offer (I would guess...).  I am happy with the choice that they helped me make because I was pretty terrified of having to go through brain surgery. 

I believe the age thing has to do with the fact that all this new radiosurgery is relatively new, and long term effects....30-40 years...are unknown.  So, they figure, I, age 60 at the time of my treatment, probably won't live 30 or 40 more years, so that's not important.  So, a younger person, they think, ought to risk the surgery.  I am not in the least bit concerned that my treatment will end up causing me to have cancer.  It's a very minute possibility.  My risk of getting killed in a car accident on the way to GK was much, much, much greater. 

I would make the same decision again, if I had to.  But, I'm 62 now, so don't know if my experience is what you want to hear.  I just know that many, many people have the surgery and are happy with the results, and go on with their lives.  And many, many people have radiosurgery and are happy with the results and go on with their lives. 

I would not let doctors "scare" you into one treatment over another.  There was a story on CBS news the other night about Proton Beam and the patient they were talking about was a young woman losing her eyesight to a mengionoma and she was treated successfully with radiation.  Heck, she looked like she was 25.  So, what's the difference with that and with what you might do?

I wish you the best of luck with your decision and eventual recovery.  This isn't a fun path we've all found ourselves on, but it's one of the detours of life, and whatareyagonnado??  You just deal with it the best that you can and have some faith in our medical system and GET THE BEST DOCTORS THAT YOU CAN GET!!

Take care,

Sue in vANcouver!   

[Betsy]

Hi Anna,  I'm so glad you're exploring your options.  My first thought after reading your initial message was that if your doctors are steering you away from radiation because you're only 40 years old....run!!  I seriously wonder how current their AN skills are if they're expressing such an outdated opinion.  You're definitely on the right track.  The more doctors you speak with the better.

Post again soon and let us know how you're doing.

Betsy

[calimama]

Hi Anna7

I am 39 and diagnosed with a 2.2.x2.9cm AN in January. I am meeting this week with GK doc and the following week with surgeon. I will let you know what i find out, but hope that i will have a choice between the two treatment options. I am leaning towards GK to avoid surgery and the risks, although i am not sure if i will be a good candidate for GK.

For me the big issue at this age is that i want another baby. I have a one-year old (birthday last sunday!) daughter and i am keen for another one. I am less concerned about cancer risks down the road (i figure just be a woman means a pretty good chance of breast cancer!) and more concerned with being able to recover quickly and have a baby. I am a bit concerned though that there is some risk of pregnancy hormones causing a flair up in a radiated tumor. I did hear a story from a guy i contacted who knew a lady this happened to. Scary. I am hoping to be better informed about these risks next week.

Happy easter!

[Anna7]

Hi Calimama,

Best of luck to you in your treatment decision.  If Gamma Knife is what you are leaning toward I hope it works out for you with the fewest complications.  I know there are some posts regarding pregnancy post GK on this discussion board.  Hopefully your doctors can provide you with the best info regarding hormones and radiation. I most likely am going to have Cyberknife vs. GK in the hope that there is a greater chance of saving my hearing (no hearing loss on AN side).  Tomorrow is my Cyberknife consultation.  I expect that everything will progress fairly quickly after that once I give them the green light.  Keep us posted and God bless.

Anna 

[Lorenzo]

Good luck to both of you! 

Lorenzo

[kat]

HI everyone

I was 57 years old when I had my GK . I must admit that my reason for choosing radiation was the fact that I did not
want any disruption to my life  having to recover from surgery and I also feared possible balance problems which
would have been disastrous since we spend a lot of time sailing . Things have turned out pretty much as planned after
treatment and I have had very few problems in the last 3 years . So far so good !

At the time of my diagnosis I also had a consultation about surgery and only negatives about GK were discussed amongst
other things the possibility of the AN turning cancerous . If I had not done all the research before the consultation I may well
have been persuaded to have surgery . I would really like to know the actual statistics about just how many or (how few )
AN's do become cancerous after GK,CK or FSR since I cannot recall anyone posting with a problem like that on this site . 
Also it would be good to hear from anyone who has had GK 10 or more years ago but I tend to think that they may be just
getting on with their lives having almost forgotten about their AN experience .

Regards Kat

[calimama]

Anna7 -- Let us know how your consult goes!! CK is not an option in Canada at this point. My GK consult is tomorrow!

One thing that i wonder about with respect to the AN-radiation-cancer connection is how anyone can be sure that an AN is just that (benign) without surgery and a biopsy. I mean, i guess the doctors are pretty good at interpreting MRIs, but i am sure it would not be impossible for diagnosed AN to be something more sinister. Sorry, not trying to make this whole thing worse than it is. 

[Craig]

I just wanted to drop a note that I was 36 when I had my Trilogy radiation treatments. I will have my one year anniversery of being zapped next month. I am doing fine.

[Anna7]

Well I had my Cyberknife consult yesterday at the Newport Diagnostic Center in Newport Beach, CA.  They were the second CK center in CA after Stanford and  Stanford's Dr. Adler was involved in the set-up of their program.  What's interesting is the different treatment protocols this center proposed versus what Dr. Chang at Stanford recommended.  Stanford would do THREE consecutive day treatments at 6GY per day (total 18GY).  Newport will do FIVE treatments at 5GY per day (total 25GY) on Tuesdays and Thursdays.  I was thrown for a loop since it sounds like so much more overall radiation and I was concerned about the spacing of the treatments. The Newport doctor said that until somewhat recently Stanford did five treatments.  He also tried to explain about the radiation/GY thing but I must admit I didn't really understand.  In general he was saying that more GYs are tolerated overall because there are more treatments

Has anyone else come across this issue while researching their CK options?  And what feedback did you receive from the doctors and/or could anyone explain it a little better to me? I'm going to contact e-mail Dr. Chang again but would appreciate any insights from ya'll.  I know that many of you understand and are able to articulate the technical aspects very well.

Thanks, Anna

[ppearl214]

Hi Anna,

I have to say, you are checking out, in the CK world, some of the best of the best!

I am a perfect example of 5 day CK treatment.  For me, it was explained, that overall total Gy (rads of radiation) is fractionated out with a primary goal in mind.... to safely treat the AN while minimal affects to surrounding normal structures, as well as better chance for hearing preservation. Now, like you, I questioned 5 day (I had 30Gy total) and many here will tell you that during my decision making process, this was a major concern to me (I even challenged the CK Radio-onocolist on this!).

Now, exactly 2 yrs post CK... and knowing I questioned the 5 day treatment plan, they save 100% of my hearing (for what it was at time of treatment......). I met with my team last month for the follow up and presented my hearing test results to them and rumor has it, the test results are now framed.

For me, my ultimate goal was to save my hearing.... for me, 5 days was a challenge and hard thought for me to handle, but my understanding is that now.... 5 day treatment is not so unusual as they do what they can to help protect normal surrounding structures as well as hearing preservation.

Will see if anyone chimes in to add to this.....

hang in there... regardless of what you decide or .....  know, I'm cheering you on!
Phyl

[Anna7]

Hi Phyl,  Thank God for you and the others on this board who take the time to make others feel sooooo much better with your experiences.  Could you direct me to the topic where you discussed your struggle while deciding on your treatment?

Anna

[sgerrard]

Hi Anna,

I think its great that Dr. Chang called you, and that you are pursuing CK as a treatment option. Can you ask him to call me too?

The math of radiation dose is a bit of a mystery, but the following is true:
1 dose on GK, 12 Gy each, = 12 Gy total
3 doses on CK, 6 Gy each, = 18 Gy total
5 doses on CK, 5 Gy each, = 25 Gy total
5 doses on CK, 6 Gy each, = 30 Gy total
25 doses on FSR, 2 Gy each = 50 Gy total

These are all common treatment protocols in use today, people on this forum have had all of these. I suspect the formula for calculating the biological effect of the radiation includes squaring the daily dose, or something like that, so that the net effect is approximately the same for all of them.

If you really want to dig into it, shoot a question to the docs on the cyberknife forum, see if they offer any better explanation. http://www.cyberknifesupport.org/forum/ . Newport sounds like a good center to me, though.

Steve