Author Topic: Radiation or Surgery?  (Read 7440 times)

nteeman

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Re: Radiation or Surgery?
« Reply #15 on: July 16, 2009, 06:56:31 am »
If you are considering radiology, I would also ask them that vis-a-vis the location. Ours are small but very near all the other nerves so radiology may pose risks to hearing and facial nerve also since they are all there.




With all due respect to Neal, statistics show that there is roughly equal chances of a tumor growing back with either radiation or surgery

This does not represent what I said. While unlike you, I do think all approaches chould be considered. What I was saying is while there may be a small percent of regrowth with surgery, after the procedure the tumor is out of your head! With radiation it remains and you hope for necrosis but it is still in your head! If one chooses that course of treatment one must accept the permenant occupany of the tumor in your head even if it doesn't cause any problems.  That is what I meant.
Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
Dr.Bederson & Dr. Smouha
9:30am thru 5:50pm
http://www.facebook.com/neal.teeman

Tumbleweed

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Re: Radiation or Surgery?
« Reply #16 on: July 17, 2009, 12:18:17 am »
Neal, the quote you copied was my quoting "anothernynewbie" and not you. As for my comments about recurrence, I was referring to your statement, "Consider that while you are a good candidate for radiation therapy, the tumor remains in your head and though it doesn't happen often, years after treatment it may begin to grow again."

Again, there is no more chance of regrowth with radiation than there is with surgery. In fact, the chance is only about 2% with either type of treatment. I did not want your statement to lead someone who is just beginning to search for answers to conclude that there is a higher risk of recurrence with radiation treatment than with surgery. That simply is not the case. And even with surgery, sometimes a small piece of the live tumor is left behind, either intentionally or by mistake, and can grow; it is sometimes difficult to remove all of a tumor without damaging the cranial nerve it is attached to, so surgeons sometimes elect to leave some behind.

It's unfortunate that you believe I think all approaches should not be considered, because that is exactly what I was trying to encourage (by pointing out a misinformed opinion that could have led someone to summarily rule out radiation). In fact, my post also tried to give useful information about different surgical approaches and also offered that W&W was a reasonable strategy. Had I been a radiosurgery cheerleader, as you assume, I would have simply excluded all comments about other courses of action. I try to give as much information as I've discovered through research and correct common misperceptions when they arise on this board. I realize that the choice of treatment is a very personal decision that each one of us must make for themselves. If I've contributed useful information that helps someone  make an informed decision that betters their life, then I've accomplished what I hoped to do. And if I hit a raw nerve (no pun intended) by countering -- as politely as I could -- your unfounded worry about radiosurgery, I am sorry I hurt your feelings.

Sincerely,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

nteeman

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Re: Radiation or Surgery?
« Reply #17 on: July 17, 2009, 12:20:34 pm »
I do not have any 'unfounded worry about radiosugery' and would have chosen it if it was appropriete for me--and my feelings are not hurt.  But I do read your posts as biased towards radiosurgery and could be misleading to one trying to make their treatment decision.
Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
Dr.Bederson & Dr. Smouha
9:30am thru 5:50pm
http://www.facebook.com/neal.teeman

ppearl214

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Re: Radiation or Surgery?
« Reply #18 on: July 17, 2009, 01:18:40 pm »
We see the biases when we speak to specific doctors... we see biases in folks that have been treated... we see biases all over. I don't take anything said by anyone here in the forums as bias.  I see it as their personal perspectives, possibly related to their own personal experiences, nothing more.   My hope is that anyone (ie: a newly diagnosed patient) that reads the inputs provided by anyone here will know to step back, weight it all out, then come to their own personal decision based on their own personal situation.

Just my 2 cents.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Mickey

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Re: Radiation or Surgery?
« Reply #19 on: July 17, 2009, 03:15:18 pm »
Nicely put Phyl! Having an AN has many alternatives which in most cases have all been sucessful. All have some drawbacks which can happen and really are a pesonal choice after careful investigation. Everyone is different and its just a matter of one`s own opinion. Best Wishes, Mickey

eab

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Re: Radiation or Surgery?
« Reply #20 on: July 21, 2009, 08:16:02 pm »
Jeff,
I hope all is going well with your research. As you look through posts you'll find lots of bits and pieces of people's stories.  For a complete, 2 year autobiography of a CK patient, check out www.myacoustic.org. I found this website really helpful in understanding the whole experience of one person's journey.

I'm 38 and have 3 small children - for those and many other reasons I decided against surgery.  I had GK 2 weeks ago, am doing great and can keep up with my kids.  I know that I have plenty of time ahead of me for swelling and side effects but I am confindent that the tumor is dying and any side effects will be manageable.

Continued well wishes for your decision making process!
Beth
Left side AN 2.5x1.7x1.5cm, limited hearing loss, limited tin., good balance
GK 7/6/09 Hoag Hospital; MRIs at 2, 6 & 12 months show no change in tumor size - hearing etc. same as before GK.

 


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