ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Nancy Drew on August 01, 2008, 01:58:21 pm
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Hi!
I have an appointment to see a doc for a second opinion next week. I have been twirling around all kinds of questions in my mind for the past couple of months, but unfortunately I had not been writing them down. I started with my list today, and it seems like I should have more questions. I have checked out he list that Kate has posted here, and I have looked at a few lists on the internet. Any of you GKers who might have some ideas of some really important questions to ask . . . . .please chirp in. Thanks.
Nancy
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Hi Nancy,
Kate's list is a great start... solely from a Radiation standpoint (regardless if GK, CK, FSR, Trilogy, etc), I would also toss in:
1. How many Gray (Gy) (rads) of radiation will I be subjected to?
2. How many Gy will my brainstem end up being subjected?
3. If tumor swelling/edema is to occur, is there room for the swelling to occur without interfering with other brain structures?
4. Will I be given any course of meds to help keep potential swelling in check (ie: Decadron, OTC Ibuprofen, etc)?
5. What will be your follow up with me after treatment? (ie: ordering my MRI's, in office appts, etc)
6. Should I run into any issues post-radiation, who will be my point of contact (ie: Radio-Onc nurse, etc)?
those are just a few to start, dedicated to radio-docs.... I'm sure others will think of more that I didn't note.
Hang in there!
Phyl
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Thanks Phyl,
I hadn't thought of some of those. Thanks for the info. Hope to hear from others.
Nancy
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Great questions Phyl! I am taking your list with me to Pittsburgh.
Also, good luck on your appt. Nancy. I wish you the best.
Windy
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Thinking about you Windy. Hope all goes well, and please check back with us. Hope the crew up north gives you nothing but the best of care. You are gonna do great. Take care. Nancy :)
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windy, good luck at Pitt.... pls let us know how it goes....
ok, one more "chirp".....
will I be given any sort of meds/sedation prior to the treatment? If so, what?
looking for others (esp. the radio-gang) to help think of things I missed... I know I missed a lot.
Phyl
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Then there's the 'subjective' questions you have to answer yourself as you meet with them:
-- Do I trust these 'guys'?
-- Are they open to discussing ALL three options - wait and watch, microsurgery, radiation? Each one, fairly...,
-- Does the staff seem caring or 'harassed' and too-busy?
-- Do they respect your input and thoughts and decision-making?
My 2 cents...
Dana
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Dana,
also great questions... thanks!
*has thought to develop thread of questions, from a radio-perspective, for newbies to use when researching all forms of radio-treatment options*
Hmmmmmmm.......
Phyl
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Dana.
You have some really good points about trusting the doctor and his staff. This is one of one of the reaons I am seeking another second opinion next week. I think my doctor is very competent, but his personality is bit off with mine. I am a talker (duh), and I feel like I need some more communication from him to feel more comfortable. Also, I don't really click with his nurse. She is good about relaying info to the doc and returning calls, but she seems a bit disconnected. Hard to explain in a way. I just don't get the "caring" vibe that puts me at ease. When my AN grew and hearing decreased this past year, my doc did look me in the eyes and told me what he would do if it was him, his wife, his child, etc., and I respect that very much (he recommended going ahead with GK). And, I would feel comfortable with him doing the AN for that very reason, at least.
A guy on this board who lives in the Denver area has had good results with the doc who did his GK in Aug. My appointment is with his doc next week. He said his doc spends a lot of time answering questions, and he had a lot of confidence in him and the neurosurgeon his doc uses. This doc has an excellent reputation also, and he uses the same GK machine my doc uses, which is the newest one in town. So, I guess I am just doctor shopping at this point. I do realize that a very serious doctor like mine has to mean something though--means he is probably a good doc.
But, anyway, thanks for your thoughts on trust because this is a big factor, but I also want the best doctor. I'll be checking out both of their stats, also.
Nancy
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Nancy,
It's funny you mentioned not clicking with his nurse, because I was going to put that in as an explicit 'question', but I modified it to the "staff being caring or harassed' question. Truth is, one of the best qualities of my team at UW Medical Center is the nurse. She's right there with you; I can always call her, ask for something (like to talk to a doc, or have her mail me the MRI CD, or go talk to her when the MRI machine was down to say I just wanted to talk to docs and then do MRI in my hometown). She's busy, but she prides herself in always following through. This is a big plus for me. She 'gets' me, she knows I'm more educated that most of their patients, and have strong -- but well-thought-out (I think) -- plans about what I want to do. In many ways the nurse is as important as the doc, cuz she's the 'gateway' to the doc.
Take care,
Dana
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Nancy,
The questions you ask depend on where you are in the process, and what you are looking for. Early on, you might ask questions that compare radiation, surgery, and watch and wait, for instance. At this point for you, though, it seems more like a question of "will I do radiation treatment with this guy?" That's where Dana's comments come in.
I think you should go to this appointment with the intention of knowing, on your way home, whether you will be going back and getting GK with this doctor. For that purpose, I would focus on practical questions that can help you visualize actually doing the treatment with him.
What will the actual process be like? What time do I arrive? What sort of medication is given when the head frame is being fitted? Will it hurt? How long will I be sitting around with that on? Can my husband be with me?
How long do I have to lie still on the GK machine? Will I feel anything during the treatment? What happens if I panic? How long will the whole process take? Can I drive home afterwards? Will I feel anything right away? Can I go to work the next day, or the next week?
Your concern about use of steroids should be a question. Will I need something to control swelling afterwards? Is there an alternative to steroids?
The the questions about outcome. Have you done this before? Is it going to work? Will it stop the tumor growth? Will it preserve my hearing? Will I be experiencing new symptoms months after treatment? Can I call you if it starts to feel strange? How long before we know it worked? When will I get my first follow up MRI?
You could finish up with a point blank question about doing the treatment. So, do you think I should get GK now, or watch and wait a while?
Some of these questions will have the usual "it depends, no guarantees" kind of answer, but asking them helps you get a sense of how the doctor sees things, and whether you have confidence in him. Others help you get a clear picture of what it would be like to actually do the treatment, which can help you decide if you are going to do it or not.
I hope you have a great appointment. It is of course not necessary to decide anything right away, but if you can get a good sense of what it would be like, and what kind of doctor he is, you can come away with a pretty strong gut feeling about it.
Steve
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Hi Steve,
I am going to copy your reply because those are all excellent questions. In addition to looking for personality fit, I am also going with the intent of getting questions answered at the same time. This doc sounds like a doctor who has a lot of patience and a doc who will perhaps spend more face to face time to answer questions. Even if I do "click" with his personality, I might still go with my current AN doc. I do have a good sense of trust in my AN doc, and I would feel comfortable having him do my GK procedure. In fact, I have an appointment set up with my AN doc at the end of Aug. to go ahead and get the GK set up should I decide to go with him. At this point my appointment with the doc I see next week is scheduled as a second opinion so that is what the doctor is expecting. It is not like I am a new referral. My AN doc sent me to another doctor for a second, and I wasn't impressed with that doctor. I am seeing this doc next week as a patient referral. I think it is good to get both perspectives. Kind of like finding someone to work on your house. A lot of times you get better work from a personal referral say than picking someone out of the phone book.
I am still in the confusion process of making this decision as you already know from all of my posts. Your replies have always been very helpful, Steve, and I appreciate your tuning in. As I have said earlier in other posts, I am pretty sure I will be going with GK. If this doc next week says to continue to W&W, I will most likely override his recommendation because I think I am ready for treatment. So, if nothing else I can spend the time "picking" this guy's brain about the GK procedure. If I had to guess, the doc will probably say I am a candidate for both W&W and GK. He might or might not tell me what he would personally do so I am prepared for this possibility.
And, Dana, that is good info about the nurse's part in the procedure. I am not sure if my AN doc's nurse will be in on the procedure or not. Another question for me to ask. Thanks.
Nancy
BTW. The Denver guy had his GK done in April not in Aug. as I stated above.
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Hi Nancy,
When I was scheduled for the GK procedure at Providence, I was given an appointment with the specialist there and he went over a lot of things. I didn't know what to ask, but felt they gave me enough info at the time. I was given a CD to take home and watch that explained the procedure. I was given a tour of the facility. I met the head nurse. She took me into a room, separately from my husband, and went over some questions with me, including "does your husband hit you?" kinds of questions!! I was given written instructions and information. In my experience, my team was very thorough in their information giving. It seems that the doctors are in charge of the procedure - the "hardware" - if you will, and the nurse was in charge of the "software" - me!. Isn't that always the case? She calls the next day to see how you are doing. Actually, I was on a decadron high then and felt wonderful. She should have called later in the week. I never called them, but I was in contact with a GK group, that has since disbanded, but they were helpful to me and assured me that what I was going through was normal. Some of them had gone through the same thing. Hence, the wonderfulness of Support Groups! Forum, take a bow. :)
The only thing I would add to this great list of questions is: IF I AM TO BE GIVEN A STEROID AFTER THE PROCEDURE AND I SUFFER, IN THE FIRST WEEK, FROM THE COMMOM SIDE EFFECT OF INSOMNIA, can I take any sleep aids?
Believe me, after 3 days of 2 hours of sleep a night, you will wish you'd asked this question. Whether or not they will let you have it, or whether or not it will work in combination with the steroid are answers that I don't know, because I never asked my doctor. You might have to just tough it out, like I did. But if sleep aids are okay, it might save you a little bit of grief. But then, you might not have this problem.
Believe it or not, this kind of reminds me of when I was pregnant. You girls know how it is, once you say your PG, then everybody has a story to tell. My poor girlfriend had a heck of a delivery and when I saw her in the hospital she looked like she'd gone through a knot-hole backwards. She has broken blood vessels in her eye! She was so splotchy and tired and she hurt! I was very nervous about having a baby after that. And you hear all sorts of variations on how that baby gets out of you! Nobody told me about "back pain" because my little one was coming into the world face up, instead of face down (his backbone was against my backbone. ouch). But no broken blood vessels of the eye, in my case. And even though Nature gave us one "natural" way of giving birth (with the exception of Caesarian - but maybe that's nature's back-up plan!) there certainly are a variety of experiences in getting that baby into your arms. No matter how prepared you think you are, "Individual results may vary".
Having said all of that, the best offense is a good defense, and you are doing a great job of being as informed as you possibly can. I applaud you! I can't wait to hear how well you will be doing after your treatment, because I think your AN picked the wrong host. It doesn't know who it's up against! ;) :D
Sue in Vancouver USA
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Hi Sue,
Thanks for your interesting and informative reply. The baby story was pretty much on target. Before I had my son, I heard so many horror stories that I just wanted to pretend I wasn't having a baby-- maybe I was really just getting fat. I had natural childbirth, ouch, but I have always made a point to never tell any mother-to-be about the pain I endured. So, yes these ANs are all different, just like childbirth, and some do great and some really suffer. But, from what I have read here on this board there are some real troopers, and I admire each and everyone one who post here.
Interesting that they would ask if your husband hits you. I always see the brochures in the doctor's office, but I have never had a doctor ask me right out. Good domestic violence prevention technique though which is good. Sounds like you got a lot of good information about the GK procedure before jumping in. I think it is helpful to be informed as much as possible because it probably makes for a more positive outcome.
I got my third opinion from another AN doctor last week, and he was just wonderful. He answered all of my questions fully in terms I could understand. Stuff like, "Imagine your tumor being a grape. . . ." Then he explained how the radiation zaps the tumor. Very helpful. Needless to say, I now have a new doctor who doesn't wear a white coat and explains medical procedures in real people talk. I don't mean to put the white coats down, OK! But, I also found out that this doctor treats more ANs with the GK than any other doctor in this part of the country. Why not go with the best. However, he didn't try to sway me one way or another even though he said my AN was a good candidate for GK. He has referred me to a neurologist and a radiation oncologist to get their opinions, and he also said I would get a tour of the GK Center. Still about 95% sure I will go ahead with GK at this point. Just nice to know that I am doing the research I need to feel totally comfortable with whatever I decide to do.
As for the steroids and sleeping pills. Those are issues for me. In the past I have taken Prednisone, and it sent me into a deep depression where I had to be hospitalized. I have been taking sleeping pills for the past 10 years or so for chronic insomnia. I mentioned this to the doctor, and he said it would be an issue where I would have to be carefully monitored. I am sure this issue will be discussed in more detail down the road, but still it is something that worries me. Thanks again everyone for your input and support. Hopefully I will have a definite decision to report by the end of next week after I see the other doctors.
Nancy
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Nancy,
I am sorry, because I remember now that you mentioned the problems with steroids and such. I forgot! Anyway, that sleeping problem was probably the most miserable time I had after GK and sometimes I focus on that too much, I guess. I was so happy when regular sleep returned to me. I'd just never gone through anything like that, and the fact that you can be so tired and just lie there in bed for hours and then finally fall asleep and then wake up after 2 hours for several days in a row is just the most unrelenting, awful feeling. There is insomnia and there is this, and this was terrible. At least for me! So, I'll quit nagging you about that! ;)
I know everything will be okay for you. Like I said, your AN picked on the wrong person! It should never have attacked Nancy Drew! HA
Sue
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I got my third opinion from another AN doctor last week, and he was just wonderful. ... Needless to say, I now have a new doctor who doesn't wear a white coat and explains medical procedures in real people talk.
Hi Nancy,
Sounds like a good doctor to have. Glad you found someone you trust. Hope the other appointments go well.
Take your time. We get lots of practice at being patient on this forum...
Steve
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Steve,
Thanks for your support. Since my MRI in May, I feel like my decision making process has been dragging on forever. I think finding this new doc is a big positive in helping me feel better about my options. A big thank you to CaryF on this board who referred me to him. And, congrats to Cary for his successful GK.
Sue,
You are not nagging me at all. We all have different experiences, and it is good to share them with others. I am interested in what happens to all of you. I haven't taken Prednisone in over 18 years so who knows what it will do to me should I have to take it. The doc I saw last week said if I have to be hospitalized to monitor my mood and sleep issues then that is what might have to be done. I have a good doctor who helps with my mood and insomnia issues, and I saw him a couple of weeks ago. He said he would work with my AN doc about the medication issues. I think I am finally beginning to see that I need to quit worrying about things that might not even happen. If I have GK, then I just need to go in to it full on with positive thinking.
Here's to positive thinking. Nancy