ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Anna7 on March 19, 2008, 02:50:24 pm
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Hello, I'm newly diagnosed (1.3x8x8 left AN) and still struggling with treatment choices. I am 40 years old and doctors have told me that I'm too young to consider radiation treatments. I'd like to ask those of you out there who were over 50 yrs old when you had your AN treated with some form of radiation, would you still have opted for it over surgery if you were 30 or 40ish? (not that 50 is old, just using it as a form of delineating threshold) When I talked to the surgeon at HEI I left with tremendous fear about malignant conversion after radiation.
Thanks, Anna
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Hi anna,
well, I was 45 (UGH!) when I had CK 2 yrs ago (ok, stop adding it up, folks!)..... and I am really waiting for folks such as Vancouver Sue (GK patient) and Jim Scott and some of the others to chime in about age and radio-treatments... They can best share about radio-treatments done at wonderful ages! :)
Oh, the discussions about malignancy post AN radiation.... I'm REALLY going to sit back and let others note as it riles me up when I constantly read this.... my hope is that dr's would be better informed. Not saying it doesn't happen, but heck, I have more chance of being hit by lightening vs. my radio-treatment causing cancer. I'm really going to bite my tongue on this one......
Phyl
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Thanks for your prompt response Phyl. I feel like a chicken with my head cut off right about now. I don't know, perhaps I'm just searching for security in numbers and would love to hear from others.
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The odds of having an AN are around 1 in 100,000 but your odds and mine are both 100%. My point is when it happens to you - you "become" that statistic.
I had surgery to remove my AN and have had great results and no complications. Put yourself in the best hands possible and good things happen.
Joe-
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anne im 44 now was 43 when i had gamme knife radiation done on a an 1.5 by 1.5 good luck to you.
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Anna -
I had surgery, but my doc did give me the option of radiation - specifically GK. I was 45 1/2 at the time of my diagnosis and surgery.
If you're currently 40, I can't imagine that 5 1/2 years would make that much difference. I've always heard that the option of radiation or surgery was more related to the size and location of the AN - not the age of the patient.
But I'm not a doctor; maybe there is some valid reason for this ???
Jan
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There is a neurosurgeon at HEI who also performs Gamma Knife radiosurgery, his name is Dr Marc Schwartz.
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You are more likely to die on the operating table having AN surgery, than you are to get cancer from radiation treatment of an AN. Fortunately, neither one happens very often.
It is a bit sad that otherwise well qualified doctors still trot out that little "threat", despite it being irrelevant when considering treatment options.
.... I'm REALLY going to sit back and let others note as it riles me up when I constantly read this....
Yeah, me too.
Steve
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Anna,
I think I already offered you my opinion about HEI and radiosurgery advice. While they may have a GK available for a patient even they don't feel comfortable operating on ( such as too elderly) , they are not proponents of it as a first line approach to treating an AN. Anyone who reads the misinformation about radiosurgery on their web site or listened to the panel discussions at this years symposium ( I bought the tapes) would come to the conclusion that they push surgery. You really need to do some consults with doctors who understand that option. otherwise, you're just going to continue to be frustrated in getting good quality information to make a decision on.
Mark
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Thank you all for your thoughts. I'm leaning toward Cyberknife after already consulting with House Ear Clinic regarding surgery (Dr. Schwartz) and another highly respected neuro oncologist/neurosurgeon at UCI medical center regarding Gamma Knife. I contacted Stanford and they recommended a Cyberknife center close to me in Los Angeles. I'm feeling calmer now as I inch closer to a decision. Feeling out of control has been the worst part of this whole experience.
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chiming in a bit late on this. My doc put my chances of getting a malignancy from radiosurgery as smaller than getting cancer from any other cause / reason. I was 44 and a bit when I was treated.
Ciao, Lorenzo
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Hello
I was 37 when I had GK.
Mia
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Hi,
My response is not based on extensive research on whether GammaKnife (or any radio"surgery") can cause cancer, but I think that it's ironic when one does a Google search for "Gamma Knife causing cancer", all the responses are about Gamma Knife being used to TREAT cancer!
Gamma Knife has been around for decades. I haven't seen any reports popping up linking Gamma Knife treatment to CAUSING cancer. Perhaps you could put this question to, for example, someone at the House Clinic in LA (via email) or see if it's discussed on the CyberKnife patient site (Steve, what's that URL?). I do really agree with Steve that there are many things, including microsurgery for an AN, or totally unrelated things, that are more likely to be difficult or fatal than radio"surgery".
If I were you, I'd research the question more, try to find those who you sense have a balanced perspective, before rejecting Gamma or Cyber Knife. I can tell you from personal experience that Gamma Knife (which is what I had) is ALOTTTTTTT easier to recover from than brain microsurgery, which several members of my family have had in the past. Microsurgery can be a good choice, but I don't think that fear of cancer from radiosurgery is a good reason to choose microsurgery.
At age 40 I would have had no qualms about choosing radiosurgery, but that of course is a personal choice.
Keep us posted about your situation, and tell us if you find any balanced discussion or research about this question of radiosurgery for the younger.
Take care,
Dana
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What Dana said ;)
Nice post, quite on target
Mark
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Microsurgery can be a good choice, but I don't think that fear of cancer from radiosurgery is a good reason to choose microsurgery.
Dana
I also agree with Dana - and Mark. In fact, IMO Dana's quote (above) just about sums it all up.
Jan
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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 :D
Be well, all!
Phyl
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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.
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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
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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!! ;D
Take care,
Sue in vANcouver!
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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
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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!
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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
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Good luck to both of you! :)
Lorenzo
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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
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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. :-\
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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.
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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
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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
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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
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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
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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
Hi Anna,
I had to dig deep for this one (I post a wee too much around here) but I found it.... it's 14 page thread! You can follow my process and see the compassion and love and support and inputs from others. This thread was my public way to share my journey (at the time) and so many here truly helped the cause. You will see the humor run amock in the thread, but, it was truly needed at the time to help keep my wits about me. Grab a fave snack and beverage... sit back... happy reading.
http://anausa.org/forum/index.php?topic=847.0
Phyl
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Okay Phyl, I owe you one for digging through the archives. Thank goodness the whole decision process is in the past! ;D Where your five treatments on consecutive days or broken up? If so what was the schedule like? Sorry to keep pestering you.
Have a great weekend, Anna
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You owe me nothing, anna... glad to help. For me, my treatments were consective days.... Monday to Friday (funny, Friday, last day of treatment, was "Good Friday" before Easter that year. I brought in a BIG basket filled with all kinds of Easter goodies for the radio-team.... but had to remind Shelley and Tom NOT to eat anything before they zapped me... I didn't want them, on a sugar high, getting carried away with pressing buttons, ya know? :) For me, as Friday was my last day of treatment, it truly was a "Good Friday".
Phyl
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Wow, so yours was consecutive. Interesting, it appears that there is a multitude of "acceptable" protocols. As I posted previously, the CK center I consulted with will do the five on Tuesdays and Thursdays only. Of course, for me, this begs the question of why the delay since there will be two periods during my treatment with four days between. I e-mailed Dr. Chang asked his opinion regarding the time gaps. He responded but didn't give his opinion one way or the other as to whether it was a good or bad idea to space out the treatments. He just said that there are various options and it is a personal choice each patients has to make. I suppose he would not want to give his opinion or say anything that may be construed as negative about another CK center's procedures. Perhaps I'm being too nit-picky but I'd like to feel some level of confidence as to which protocol is most effective.
Thanks for listening, Anna
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Hi Anna,
I have to respect what Dr. Chang shared with you.... he would know better than me and I can understand what he notes. I know of some that had their radio-treatments broken out with non-consectutive days... the general consensus being...... giving the normal structures that may take low dose radiation per treatment a chance to "recupe" in between...... we know that in the case of GK and CK.... the brainstem and surrounding normal structures will take a small amt of radio during treatment... thus, so to say, it gives a "breather" in between.... it's not an uncommon practice.
Hang in there... regardless of what you decide, no matter what.... cheering you on! :)
Phyl
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Hi Phyl,
I found what Dr. Medbury posted regarding Gy dosages on the Cyberknife support website interesting, didn't you? I suppose the medical community is always trying to strike the "perfect" balance and we, as patients, just have to take a leap of faith at some point. Your successful treatment at 5x6Gy is testament to that!
Anna
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While Dr. Chang would be polite, and not criticize another facility when it wasn't needed, he would not hold back if he thought there was a problem. If he didn't say it was a bad idea, then it is okay. I had my treatment with Dr. Chang, and it was three days in a row, but that may just be the way they like to schedule them at Stanford, as much as anything else. There is nothing magic about 24 hours, it probably doesn't make any difference to the treatment.
Steve
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Yes, I've started to get that sense about it too. I suppose the issue can be put to rest now. Thanks for the feedback.
Anna
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amazing forum not to mention invaluable information. I must say that I haven't really heard much about people opting for the GK before I came here. My strength has been restored. My questions and concerns have been unified with others here making more sense in my own decision.
Thanks
ClaireA
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Phyl,
I still lurk on here sometimes. I read the link you provided. I laughed my fool head off. Doesn't that seem like a long time ago? I am an old fart so the age related question does not apply to me. Fear factor did. The women in my family are long lived usally into the late 90's and more. I look back on all of this experience and think I went through 9 months of tears, indecision, prayer and pure terror. Now after more than 2 years after CK I can say if I had of known then what I know now I could have skipped those months and got down to the nitty gritty and would have been 3 years post CK instead of 2. I just had my neurosurgeon check up and she said I made her day. To think 2 years and 4 months ago I was crying in her office and this visit we were laughing and joking around. "We've come a long way baby"
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Phyl,
I still lurk on here sometimes. I read the link you provided. I laughed my fool head off. Doesn't that seem like a long time ago? I am an old fart so the age related question does not apply to me. Fear factor did. The women in my family are long lived usally into the late 90's and more. I look back on all of this experience and think I went through 9 months of tears, indecision, prayer and pure terror. Now after more than 2 years after CK I can say if I had of known then what I know now I could have skipped those months and got down to the nitty gritty and would have been 3 years post CK instead of 2. I just had my neurosurgeon check up and she said I made her day. To think 2 years and 4 months ago I was crying in her office and this visit we were laughing and joking around. "We've come a long way baby"
Ya know, Sandy.... this is now my 2nd anniversary of CK (this week...) and boy oh boy, you have hit the nail on the head. I had to re-read my link a couple of times and as you note.... I sit back now, remember the terror in my own personal decision making process... and for YOU and Mark and Shoegirl and SOOOOOO many others that reached out to me and supported me during that decision process time... and to have the CK done... and now.... for those that have met me and spent time with me that have witnessed how well I do..... darlink, YOU and I (and so many) have come a long way, beby!.... and wishes to those that are in them shoes now... looking forward to their long, healthy way as well!
*shoves gray hairs back in head that originally sprouted during decision making process* :D
xoxo
Phyl
(btw, love you added "Ivan's" name to your sig line! :) )
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I was diagnosed with a small AN in Jul 06. I was 56 years old at that time. My only symptom was 40% loss of hearing in my right ear. I had Gamma Knife at Wake Forest Univeristy Baptist Medical Center in Winston-Salem NC in Dec 06. My follow-up MRI in May 07 showed necrosis; the tumor had changed significantly. My radiation oncologist was so pleased that I don't go back for another MRI until May 09. I do now have 80% hearing loss in the right ear; the other 20% is distorted, so I essentially have no hearing in that ear. If that is all I ever have to face, I can deal easily with that. So much for me. In all my research, age was never mentioned as a deciding factor for GK. I would definitely recommend GK, and I definitely recommend treatment at Wake Forest. They do so many of these procedures, they can be trusted.