Why did you choose Gk or CK?

[windy]

Thanks for the replies.  This is a great community of helpful and comforting people!  I pray the Monday appointment with the radiation oncologist goes well.  I am interested in seeing if he is only pro GK, as that is all the city has to offer. 

BTW Nancy, I do live in AL, presently in the Tuscaloosa (Univ. of AL) area.  I am not considering AL only care, though.  I am will to go elsewhere if treatment seems better for me.   

[Nancy Drew]

Windy,

Good luck with your appointment tomorrow.  I have my second opinion tomorrow.  Hopefully we won't get more confused.  I have the results of the panel that reviewed my case, but I am going to hold off on giving it to the new doctor so hopefully he can give me his true opinion.  I think I have that right.  Please post about your results.  I hope the doctor tells me his opinion tomorrow instead of sending it to my AN doctor, and then I can't get the results until I go see him.  Waiting is the most difficult part of this whole process.  I hear Univ. of AL is a good research hospital.  Hopefully they have good knowledge of AN treatment.  BEST WISHES.

Nancy

Nancy

[windy]

Thanks Nancy for the well wishes.  I wish you well on your appointment!!  I will post tomorrow after my appt.  Please do the same.  I love to hear other points of view.

I have had an emotional day.  I am starting to have other symptomology in my face and it worries me greatly.  I don't know how I went from unnoticeable symptomology to so much, all at once.  I suppose it can happen.   Take care!

[leapyrtwins]

Best of luck with your appointment tomorrow, Windy.

Let us know how it goes.

Emotional days are hard to avoid, but hang in there 

Wishing you the best,

Jan

[Nancy Drew]

Windy and Jan,

In response to my second opinion from the doc today, I wrote what happened on the Negative CK Stories Only post.  It is a lot easier for you to go there and read than to write it all over again.  Hope you came out ok with your doc visit today Windy.  As you will read, I am confused more than ever.  I am sick and tired of this AN in my head.  I am sure the majority of us feel this way.  Take care all.

Nancy

[leapyrtwins]

Nancy -

I copied the following quote from your Negative CK Stories Only post:

"I am so confused at this point because it all boils down to what kind of chance I am willing to take".

IMO with this statement, you have basically hit the nail on the head.  This is exactly what you need to take into consideration when making your treatment decision.  As we've often said here, no doctor - or anyone else for that matter - can guarantee you any specific outcome.  You need to do your research, weigh the odds, think about what you are comfortable with, and jump in - or decide to wait for a while and then jump in.

I also agree with the doctor you saw today, that in your case a third opinion will probably just confuse the issue.  Sometimes having too much advice doesn't clarify things, it just muddies the waters.

Just my take on things; for what it's worth.

Jan

 

[Nancy Drew]

Thanks Jan,

I am trying to take all of this in and not act on emotion.  I have a couple of PMs to people here in Denver about other doctors they went to for second opinions.  Some felt comfortable with the doc I went to see today, and some didn't.  I think I will feel more comfortable at this point to have another visit with my AN doctor so I can try to put the pieces of the puzzle together.  The balance test last week did not get to the doc today, and I don't know the results of that test.  Also, this doc today doesn't use GK, and I am wondering if he uses old technology.  Sounds like he leans more toward surgery, and to be honest with my tiny AN I don't think surgery is a good option for me.  Plus for me, surgery doesn't feel right to me in my gut so I'm trying to go with that gut feeling.  I don't have a gut feeling about radiation and W & W at this time.

Taking chances seems like the key to me also because whatever I do or don't do I will have to live with it.  And as the doctor said today, it is not malignant at this point.  It is good to hear that, but at times it sort of downplays the fact that hearing and other issues are involved, and that is important to me.  I don't think it is fair to compare someone with an AN to someone who has a malignant tumor.  It is not apples to apples.  Thanks for your input.

Nancy 

[windy]

First, thank you for the well wishes.  I appreciate the support!

I did see the radiation oncologist today.  He seems to be a very nice physician and seemed to be very willing to help.  He talked to me about my connective tissue disease.  He stated individuals with connective tissue diseases did not do as well with radiation as others.  He said my odds for complications were worse.  That was disheartening to hear, but honest.  He said I would have a greater chance to have nerve damage to the fifth and seventh cranial nerve, etc... It would not be greatly increased odds, but it would be increased odds compared to the normal population.

He stated he would use 12GY in the treatment, if I went the GK route.  B'ham only has GK.  He stated it was more accurate than CK.   He said it would be even harder for CK to be accurate with a tumor of my small size.   I have not read any information to back his statement of being more accurate, to date.  He stated he did treatments of around 380 tumors in a year with about 12% being an AN (around 45 per year).  I asked him if he had ever seen people who were paralyzed post GK and he said he had.  He said he had not ever seen anyone paralyzed after GK with a tumor of my size (9mm x 11mm x 9mm), but he had seen it with patients with larger tumors.  He stated if I was worried about hearing loss and being paralyzed then he suggested "wait and watch".  I told him I could not choose "wait and watch".  I feel the need to move on to a treatment.  However, I am the patient with worse odds.  He did state he would be willing to treat me post GK or even if I choose CK elsewhere.  I really appreciated his willingness to help.

I really don't know what to do.  Can anyone give me some feedback on the radiation oncologist visit?  Thanks in advance!


 

[Mark]

Windy,

In regards to the comments by your radiation oncologist:

He stated he would use 12GY in the treatment, if I went the GK route.  B'ham only has GK.  He stated it was more accurate than CK.   He said it would be even harder for CK to be accurate with a tumor of my small size.   I have not read any information to back his statement of being more accurate, to date

The 12GY for a single dose treatment is fairly standard protocol for any of the machines . Given B'Ham only has GK, that probably explains why he doesn't know what he's talking about re: CK. There are a number of posts on this subject in the archives here, but suffice to say his statement about accuracy is false. Total error for GK ( machine, CT, Halo frame) is shown in studies to be anywhere from 1-1.5 mm. Total error for CK (machine, CT) was shown to be .89 mm in a Stanford study a few years ago. Both machines are very good choices and in my view the differentiating points are whether you want a fractionated protocol or don't want the halo attached. The accuracy difference is not significant enough to worry about, but in fact, CK is more accurate than GK contrary to the uninformed opinion of the doc you talked with.

mark

[sgerrard]

Hi Windy,

Like Mark said, the accuracy debate between CK and GK is imaginary; they are both quite accurate. I don't know of a single report where anyone has been able to show that a difference in accuracy between the two made any difference in patient outcome, which is the only thing that matters.

I am curious about the connective tissue aspect. I have not heard about that before. I think it would be a great question for Dr. Medbery on the CK forum, I would be interested to know what he has to say about it. The link to the CK forum is http://www.cyberknifesupport.org/forum/. You can quickly sign up and post a question in the Brain section. Dr. Medbery posts under the name radsrus.

I am a little puzzled by this statement: " if I was worried about hearing loss and being paralyzed then he suggested "wait and watch." It seems to me that the chance of those things happening would go up over time, not down. I guess he meant you wait and hope that the AN stops growing and you don't have to do anything.

I wonder if the connective tissue disease also has an effect on surgery outcome? Unless the effect is significant, I think I would still consider doing radiation treatment.

Steve

[GRACE1]

I think Steve (& Mark) said it best: "Like Mark said, the accuracy debate between CK and GK is imaginary; they are both quite accurate. I don't know of a single report where anyone has been able to show that a difference in accuracy between the two made any difference in patient outcome, which is the only thing that matters."  You just have to find the facility and staff that you are most comfortable with.  One important fact about GK:  I had GK and the halo was not big a deal.  Please don't let that be the reason you don't go with GK.

[windy]

I agree with all of you concerning the accuracy of CK.  If CK was so inaccurate, it would have been disapproved years ago, it seems.

Also, I took the suggestion of posting to the CK board about the connective tissue disease.  It may not be as bad as I am imagining it could be, really.  I must admit I do have strong reactions to drugs, etc...  I am the patient that they say, "I have never seen this happen out of several hundred patients".  I also have had rashes from sun and drugs on numerous occasions.  That being said, it still does not mean I won't have a positive outcome.   

I have already heard back from Dr. Chang @ Stanford via e-mail, a few days ago.  He will be reviewing my MRI, etc... that I mailed last week.  I hope to hear back from him soon.  Does he ever call on the phone so that you can discuss treatment?  I was just curious. 

[Tumbleweed]

Hi, Windy:

Dr. Chang called me after reviewing my MRI. And again after reviewing my follow-up MRI. He took a lot of time to answer my questions and didn't rush me off the phone.

I recommend you have a list of questions you want to ask him, placed by the phone so that when he calls you're all ready to ask away.

Best wishes,
Tumbleweed