I'm going with my gut and have made a decision!

[chloes mema]

Went to a new oncologist, Dr. Greenberg, today for another opinion.  I'm going to stop going to doctors for more opinions since each one I go to gives me worse news than the last doctor.  So today's “worst” news is that the tumor IS touching the brain but barely and since it grew +2mm (he’s saying it grew 3mm) in 5 months I need to do something and do it soon.  Procedure would be three treatments of radiation with CK.

So the good news is I really like Dr. Greenberg.  The cyber knife center is right near our house.  Dr. Greenberg had been Head of Radiology at Moffitt for 15 years so he knows about Novalis and now he's Medical Director of Brandon Cyberknife, has been for 5 or 6 years.  He spent over an hour discussing GK, CK, Novalis, and a little on surgery.  After this conversation I will do CK not Novalis.

If he had said get on the table today I would have.  Actually, I told him I wanted to proceed and he said no, think about it for a few days then call me if you want to do this.  He really wanted me to go back to the neurotologist and have him explain surgery but I said I wasn't interested.  I think doctors are tired of hearing me say that.   

He said mine was not a neuroma but a schwannoma.  Whatever, just kill it!

Not even his patient yet and he gave me his cell number just in case. 

At least I'm smiling and not crying any more.  It's good to have a plan.  I feel like such a weight has been lifted off of me.

Thanks to everyone who writes go with your gut you'll know what's right when it's right.  It is true!!!!   

Probably will start planning end of April or first of May.  Will keep you all posted.

Karen

[Tod]

Congratulations on reaching decision! I hope all goes well for you.

-Tod

[TJ]

I would like to think that for most of us the decision on what to do is by far the hardest.  I am glad that you feel comfortable with the doctor and the decision.  Having had CK about 15 months ago, I can tell you that it is very easy to get through.

Best of Luck
TJ

[leapyrtwins]

Karen -

this is just the kind of doctor you want.

Congratulations on making your decision!

Jan

[Sheryl]

Sounds like a fantastic doctor - does he have a clone somewhere??  Isn't it great to have made a decision - just wait until after the treatment - you'll feel like a million bucks!!

Keep us posted.
Sheryl

[Tumbleweed]

Congratulations on making your decision -- and choosing CK, a great treatment plan -- Karen.

It sounds like you have an awesome doctor.

Btw, a schwannoma is a type of neuroma. But who cares? Glad you've got a plan to kill the sucker, by any name!

Best wishes,
TW

[Suu]

WOW Karen - it's really good to read your post.  What a great choice in doctors.  Mine gave me his number as well and that makes it so much easier to handle.

I'll watch for more posts.

Suu xxoo

[leapyrtwins]

Sounds like a fantastic doctor - does he have a clone somewhere?? 

Actually he probably has several; my neurotologist fits this bill 

Jan

[chloes mema]

Oooookkkkk!  Friday I get a message to call Dr. Greenberg (oncologist/radiologist) to set up my dates but when I call the number that was given it's to a diagnostic center at USF.  They want to set up my appointments for CT & MRI for CK.  I said I don't even know when the CK is going to take place, don't I need the mask made, don't we need that date first?  I said I thought the CT & MRI would be done right before the procedure.  The lady on the other end sounded rather miffed & said call back when you have your information.  Excuse me? 

I'm not getting the warm fuzzies about this left hand not knowing what the right foot is doing routine.  So I have my list of phone numbers and names to call Monday morning which ought to be fun since the offices were closed Friday.

Just needed to share that little tid bit of info.   

Happy Easter

Karen

[Jim Scott]

Hi, Karen ~

I'm sorry to learn about this apparent confusion regarding your Cyber Knife treatment protocol.  When medical office staff are dismissive and/or rude, it is extremely off-putting and doctors should realize this.  You're facing a serious situation and treatment but being told you need CT and MRI scans when you don't yet have a date for the treatment?  That is illogical and, as you noted, doesn't speak well for the people involved in the CK procedure.  Your follow-up calls should be interesting.  I trust you'll be able to get your questions answered and the whole business straightened out on Monday.  Meantime, a Happy Easter to you and yours. 

Jim

[TJ]

Karen

I had my CT and MRI and face mask done at least a couple of weeks before I started my CK.  They have to do that so the team of doctors could meet and map out the treatment.  Then then put that info into the computer and at that point they can start your treatments. 

So I really don't think you need actual CK dates before they do that.

TJ

[chloes mema]

I was of the impression from the oncologist (of course, I'm so hyper now a days I'm probably totally wrong about this) that the mask, the MRI, and the CT would be done within days of the CK.  I also thought I understood the doc to say that scans would be done, the mask molded, then another set of scans.  I also thought I had to go see the neurotologist before anything could be done, but what do I know, I'm only the patient in this drama doing too much thinking.   

I'm assuming that the oncologist did send my name up to the diagnostic center but it would have been nice if someone told me too.

Yes, getting answers Monday (I'm really thinking that it'll be Tuesday because Mondays at doctors offices are always hectic) should be interesting.  I'm already making another list of questions.

Do they usually make the mask at the same place they do the CT & MRI?  When I toured the CK center I got the impression they make the mask there.

Have a wonderful Easter (I've already gotten into the chocolate!    )

Karen

[Jim Scott]

Karen ~

In my radiation experience (FSR) the 'mask' was made about a week prior to the treatment sessions - at the radiation center (actually, it was called a 'cancer treatment center' but I avoided using that term - for obvious reasons) but the CT and MRI scans were performed a day before the actual treatments because my neurosurgeon and radiation oncologist wanted the most recent 'views' of the (remaining) tumor so they could 'map' the radiation beams precisely.  It worked!

Jim

[chloes mema]

Jim

You're experience is exactly what I thought would be mine (in the sense of mask & mapping).  Well, Monday will be here soon enough and I'll find out.  Or maybe Tuesday since I figure Monday will be hectic at the doctor's office.    

Was the "mask making" uncomfortable or just doable?  One oncologist said it was "no walk in the park but doable" and the oncologist I chose to go with never made a comment one way or the other.  It's just the fear of the unknown for me since other than child birth I've never had any big medical procedure.   

Karen

[Jim Scott]

Jim

Was the "mask making" uncomfortable or just doable?

Karen ~

It's tolerable.  They use a thin plastic full-face mask with a small mesh pattern that is warmed up (a lot - but it doesn't burn) and placed on your face until it cools (about 15 minutes).  The goal is for it to tightly conform to the contour of your face.  It is very snug,  The 'holes' in the plastic mesh are used by the radiation technician to 'aim' the beam.  On the FSR table, the back of the mask is bolted to the table so you cannot move your head.  That is so the carefully plotted radiation beam 'hit's' the right spot.   I needed two tries to get the mask right.  Very tedious but not terribly uncomfortable.  However, anyone suffering with claustrophobia would have a difficult time of it. Fortunately, I'm not claustrophobic and I didn't.   Remember, I had FSR, not CK and the process may be slightly different.  I simply offer my experience for whatever good it may do.

Jim