Questions ... GK consult tomorrow

[Keeping Up]

Get my first consult tomorrow.

I was diagnosed in early December but have finally got a GK consult (the tumor is small, and the Cdn system moves a bit slower).  I am a watch & waiter, at least until my follow-up MRI in May.

So what questions do I ask?  I have a slew of questions I want to ask but am actually a bit afraid I will scare off the poor doctor with my onslaught desire for stats.  I have very little interest in the machine or the actual procedure - many of described here with great detail so think I am set on that side - and am not too nervous to deal with that aspect.

Despite some of my prior posts, I think GK (CK isn't available in Canada) is a tremendous option - minimally invasive, no time off work, minimal short-term impact to hearing/facial nerve, no hospitalization, no surgery.  However, the idea of blasting my brain with radiation and the apparent lack of long term safety of radiation has me a bit nervous.  Also, the common ENT comments on the risks, and that surgery is more advisable.  Then, you add in several consults with radiosurgeons for the youngish crowd that actually repeat the ENT/neurosurgeon's preference for surgery - and you lose your nerve!

Some of my questions:

- # of patients treated each year
- complication rates - most common/incidence
- long term stats at the centre - tumor control, facial nerve, hearing preservation etc.
- why are long term stats so difficult to find for Gamma Knife.  Should that be a concern for someone my age?
- conservative mgmt (he will know my referring team which are conservative mgmt advocates)versus radiation for intracanicular tumors - does GK have a significant impact on intracanicular tumors?  Or, am I just as well of waiting until the tumor is 1cm+ in the CPA before attempting radiation.  (That could realistically give me 5-7 years with a intracanicular tumor only assuming 2mm growth/year.)
- recommendations for youngish patients (what am I now at 37 yrs)
- Do I look at fractionated radiation (not CK as not available in Canada) to preserve hearing?  Should hearing preservation be a goal?


Between now and the MRI results in May, I could be easily swayed to follow any of the three typical paths - continue waiting, radiation or surgery.

I am very excited to get more information, straight from a decent source, so I can keep this one on the option list.  I will admit, being able to eliminate one option - surgery or radiation - if required in the next 2-3 years, would certainly help with the decision making.

Any other question ideas?  There must be a post with question - I just couldn't find one.

Ann

[mk]

Ann,

do you know who you are seeing tomorrow? Typically at the GK centre you get to see two doctors, one poses as a surgeon, and the other as a radiation oncologist, although in reality they usually do both.
I think that you pretty much know what you ask after all the research that you have done. The GK centre in Toronto is relatively new if I am not mistaken, so they may not have very long term stats. But most of the doctors have worked elsewhere,  I know for example that one has experience in Stanford and another in Great Britain.

Just keep in mind that depending on who is the doctor on duty, the opinions may be different - there are quite a few doctors at the centre, and they don't necessarily agree with each other... which can be quite confusing. So it may be beneficial to go for a second consult afterwards, once you have digested whatever you learned from the first consult. Also ask them if they could bring your case in one of their weekly conferences, where all the doctors get together and discuss about cases, planning etc.  I am not sure if this is possible if you haven't been scheduled for treatment, but it would definately help to know what the consensus is.

Let us know how it goes. Feel free to PM me if you want to get more "insider" information.

Marianna

[Keeping Up]

Had my consult ... can't say I came away with a great feeling.  I do think radiosurgery presents an awesome opportunity to deal with this little tumor, but I have this nagging feeling that it isn't the right choice for me.  I just don't think I can get comfortable. 

I actually was relatively comfortable walking out of the clinic but then I started thinking (always a bad thing to do).

So, this is pretty much what I was told - nothing that I hadn't already heard before:

- my hearing will be lost because of the tumor
- Gamma Knife will cause hearing to be lost much faster
- size doesn't matter, as long as smaller than 3cm
- the centre has one incidence of malignancy that they attribute to the procedure - but the risk remains very low
- surgery isn't a laughing matter - very serious
- the centre has lots of experience
- phone and make an appointment, they would even follow me (ex my ENT)  - I work a street car ride away so it is easy access
- no complications at all aside from some minor pinching/short term issues from the frame and low risk of trimilagia (can't spell) at about 3%
- I can go to the movies that night
- my tumor is tiny, forget about it - wait until it grows
- it could be a lot worse (coming from an oncologist, I don't disagree - but this is serious for me)

Either way, not exactly sold on the procedure.  I am even contemplating writing the centre an email.

I hate this.

Ann

[mk]

Ann,

as everyone has said here, going with your "gut" feeling is important.

Having said that, it is important to keep in mind that here in Canada the doctors will not try to "sell" you any kind of procedure. So don't expect a sales pitch from anyone, since they don't stand to gain from doing so. It  can be frustrating, but ultimately it is your decision. Since your AN is so small, you have all the luxury of taking the time to think things over again and again.

Did they mention anything about the long term stats, and/or lack of them? What was exactly that made you unconfortable?

Marianna

[sgerrard]

They seem rather pessimistic about hearing preservation. Other than that, it sounds good to me.

The important thing is whether it sounds good to you. If not, it will help to try and identify why. Your other options are waiting or surgery, so it is worth the time to sort out what you (and your gut) think and feel about this. Maybe "wait until it grows" is the right choice for you.

Steve

[Jim Scott]

Ann ~

After reading your posts in this thread (pre and post consultation) I have to agree with my fellow moderator (and popular milliner) Steve that with such a tiny tumor and your obvious ambivalence about the manner of treatment you feel most comfortable with, a period of 'watch-and-wait' may be the best course to take at this point in time.  There really is no need for haste and even a few months will likely not affect the successful removal/radiation of the AN, but will give you the time to consider and come to an unhurried decision about the way you want to go after this intruder. 

Jim

[oceansorcas]

Have a suggestion for you.  Read the following link - you may wish to consider a FSR physician rather than take the GK option that may be closest to you.

http://www.medicalnewstoday.com/articles/133577.php

Good luck and best wishes.

[Nancy Drew]

Hi Ann,

I can't really answer the technical questions, but I can offer a little bit about my recent GK....Oct. 21, 2008.  I was in the W&W mode for a while (see signature), and I decided to get treatment if my AN ever grew or if symptoms started.  I didn't  have any real problems so to speak of when my AN was found....found by accident.  I had a really difficult time trying to figure out what to do when in May 2008 my AN started growing.  My doc recommended GK, but he said he would do CK if I preferred that option.  He didn't think my small AN was a good candidate for surgery because it wasn't in a critical area.  I was also told that I could continue to W&W, but the doc said he has seen small ANs cause problems.  He also noted that with my AN being so small, there would be less radiation going into my head.  Finally, I decided to go ahead with GK.  It was an emotional journey for me to figure out what to do, but I finally got to my "gut" feeling.  Luckily I live in an area that has a good GK center so I didn't feel the need to go out of my area. 

When they did my MRI on the day of GK, my AN had grown .5 mm....so it was on target to grow.  At my three month MRI it showed that my AN is already starting to shrink.  My hearing tested the same as before GK.  My balance test turned out normal, also.  The headframe was no big deal in my opinion.  I have had a few minor issues come up that resolved themself, but I think I can say at this point (though it is still early) that GK was the right choice for me.  With radiation it is a "waiting" game, but I am up for it.  I feel very positive at this point, and it seems to me that many here who have had radiation have had positive experiences.

Best wishes on making your decision. 

Nancy

[calimama]

Hi Ann,

Sorry i have not been "keeping up" well with the posts here due to being overwhelmed with work, life etc. (you know my stuff! 

So am glad to read you got to the GK centre. Not that it seems to have got you any closer to a decision, yet, but you will get there. I also visited the GK first, then went right back again the following week with a long list of follow up questions. I can send you all the questions i had for both GK and surgeons, let me know, I can email you.

As MK indicated, and i am sure you worked out, you generally see both a surgeon (or as MK put, someone who "poses" as a surgeon, HA! that made me laugh), and a radiation oncologist. I trust they told you to come back with any more questions, and you shoud definitely do this, and try to go on a different day of the week to that you can see different doctors (check with the scheduling to be sure).  It's good to get different opinions, ideas, even if there is no clear answer in all of it. This process is not about finding the "right" thing to do, but the right thing for YOU... and that will come with more time, info, advice, and thought. Not that it will be easy...

I guess i would have to say after my 2 visits to the GK centre, I was left leaning towards fractionated rads, as I was led to believe this method woud have a better chance of hearing preservation (which i was keen on) and i thought it might be a bit more 'conservative' given that i had a lot of tumor pressing into my brain stem.  I did not feel that anyone thought that GK was the best option for me, but no one really said either way. The surgeon i met with didn't take a position, and the first rad doctor said rads over surgery.  The second rad doctor said (more or less) rads over surgery, and fractionated over GK -- for me. No one said that GK was not an option for me.

I think my next consult was with the surgeon (who i eventually had surgery with). I think i have told you already that he recommended surgery (largely because of my age and excellent health). I think he was confident too that he could do a good job of it.  My hubbie came along to that consult... make sure you bring yours to as many consults as you can. My hubbie was convinced sugery was the way to go, and that we had found the doctor. This did give me a boost of confidence, even though he was just going on his gut.  You and your hubbie will truly be in this together. And two smart people are better than one 

I did go back and see the same surgeon again, with more questions, after i had (tentatively) booked my surgery date. I really needed that reinforcement. He was a great guy to deal with and took a number of emails (more concerns/questions) from me in the months before the actual surgery. In the last one he told me not to panic. WHO ME PANIC!?!?!?

My final 2 consults were at Princess Margaret Hospital, with two very experienced oncologists... at the brain tumor centre... to discuss fractionated LINAC.  The first guy was not super helpful really as he suggeted i wait until after having another baby to deal with the tumor. NOT. The last doc (Laperiere) i saw there was great, and i walked out of there thinking... how can i NOT do rads??... it really seemed like a no-brainer (pardon pardon). But i had also developed a comfort level (which i didn't think possible) with surgery. Then i wondered how i would going day after day for rad therapy, wondering if it was the right thing, and i thought i might make myself crazy with worry and have second thoughts (not an option once you have started treatment). 

I also went back and talked to my family doctor (who recommended surgery) and many others. In the end, i landed where i did, no regrets, but you know it was tough. What isn't?

You are smart and well informed so I know you will ask all the right questions, and then some. I really think the key for you will be to talk to enough people to get comfort with a single option. You are lucky in that you have options (some don't for one reason or another), but it makes this part of the AN journey that much tougher.

Have you got a consult lined up for fractionated LINAC? If you can see Laperiere at PMH, he was great with me and my million questions (yes, i had a list in hand).  He is super busy and I had to fight to get to see him after having already met with another doctor there. If nothing else, a visit to the brain tumor centre will put in perspective how lucky you are to have an AN. I read, with tears, the guest book there... entries from people with brain cancer, and with kids with brain cancer. oh no.

Any luck yet on a surgery consult? (which doctors did you see at the GK centre?).

OH, don't know if you asked this question at the GK, but maybe you should enquire as to whether you can expect any balance issues from treatment and what are some of the worst things that have happened in the first year with similar sized and located tumors. I think we all know worst worst cases for surgery and for rads over the long term. Probably you have little risk at all up front
(that's how it sounded anyway).

Ok, enough from me.

talk soon,
Trish

[Keeping Up]

Trish - you are a doll!!!

For everyone else, Trish and I met up, I guess now 2 months ago - how time flies when you are having fun.  It was awesome to meet a real ANer in person.  We live less than a mile apart - and frequent the same park a lot.  The park is near a Tim Horton's and has great equipment.  Funny, how we never met at the park.  Once the weather turns (please soon!), we will spend time at the park sipping coffee and nibbling on donuts.  We will meet again much much before then.  Her little one is adorable - and a talking soul in both English and Spanish.  My youngest is about 2 months younger - a boy - but is practically wordless (a bit better now) - he just grunts (boys will be boys!!!).

I am not quite sure who I met at the GK centre - I should have been more outward and asked to see his badge to write down his name.   Then ENT wrote that I would be meeting with Laperriere (s/p???) but inferred he was at Toronto Western - a google suggests he is a PMH (so same network but different hospital).  I will gather from your post that he is not Gamma Knife but fractionated type.  I do have a surgery consult supposedly in the queue - at TGH (Nyan.... - it is in my email from the ENT).  At this point, with a MRI less than 2 months away, I might as well wait until I know the results of the MRI to better frame the questions.  I won't make much a decision until after the results - and if no growth, it will be informational only.  If growth, then I guess I will have more time oriented questions. 

I like your suggestion of another follow-up at the GK centre with a different doctor.  They were all ready to just bring me under their wing and abandon all other course.  It was so casual, however, I am getting more accustomed to that approach.

I hear you on the testimonials if you are reading guest books at brain tumor clinics at big cancer hospitals - this AN situation is a relatively blessing.

So, thanks for the post - you have grand words of wisdom. 

Meet you in the park very soon (where is spring??)

Ann

[sgerrard]

It's good to get different opinions, ideas, even if there is no clear answer in all of it. This process is not about finding the "right" thing to do, but the right thing for YOU... and that will come with more time, info, advice, and thought. Not that it will be easy...

Trish,

I thought that was an excellent account of what the decision making process we all talk about can really be like. You have captured well the conundrum we sometimes encounter as we meet and discuss with various doctors, only to find that there are several best things we should do, but we have to pick one of them. You clearly gave several of your options some serious consideration, and only then gravitated toward your final decision. Well done, and well said.

Steve

[suboo73]

Hi Ann.

I have had several consults (in US) but found out that i am left with more questions than answers...
The surgeon said do something right away, surgery or radiation (in my case).
The radiation specialist said i should wait, your AN is small --aaahhhh     [same facility)
When i read the results of my first MRI, and having been already familiar with the AN basics, my 'gut' was to W & W.  It can be maddening at times, especially if i have bad tinnitus or my ear hurts (like yesterday.)

Anyway - i am now waiting for MRI #2 in April, no regrets. 
Meanwhile - my husband is fully supportive and goes to my appointments with me.  However, i know the final 'treatment' decision is mine, even though he has expressed his opinion of what he would do in my situation.  We have always decided individual medical issues this way -after 30 years of marriage, it works for us.  --BUT deciding myself makes it (as someone else here called it) - a very 'alone moment.'

Trish - what a wonderful description of the decision making process!  Thank you for your insight.

Ann - the daffodils are poking thru along my driveway and it was near 70F yesterday (same today).  Spring is (ALMOST) here in Virginia.

Sincerely,
Sue
"Blue skies, sunshine, what a day to take a walk in the park!"

 

[calimama]

Hey Ann,

Do touch base with MK as she met a few different/other doctors at GK, and went through the whole experience (which i did not). She is a great resource and has access to research you won't get on the internet. She is also our age (ballpark) and has little ones. She and I went through the whole decision process around the same time and remain in regular contact (less and less about tumors!).

Thanks for the nice thoughts on meeting and my yummy little Cali. I too look forward to park days, and evenings. I think my face has improved some since we met up in January, but still a long road with an eye that won't close. Anyway, i have little time to worry about these things anymore and hope time will continue to be good to me.

Lapierire is at PMH. My ENT referred me Lap originally, but i ended up seeing a different doctor there. After that consult, I called PMH back and insisted on seeing Dr. Lap. He is a busy guy, in demand, travels a lot, but he was awesome, patient, so hopefully you can see him. Perhaps he has thoughts on GK vs. Linac for you... he did for me. If you don't remember who you saw at GK, the receptionist should be able to work it out from your file or scheduling (i think they each tend to work particular days of the week).

C U soon!
Trish

[tatianne]

Im also in Canada, but Montreal.
I had a GK consult yesterday and wasnt given the same answers as you were.
I just thought I would mention what I was told.
Gk center here is also new, I believe 5 years new. GK Neuro I saw studied in Pittsburgh.
He told me the following:
( Im only 32 so long term affects are definitly on my mind....)

- regrowth for ANs in both radiation and surgery is 2 to 3 %, so 97-98% effective at ending the problem.
-GK hearing presrvation ranges from 50 to 70% with small tumours
-risk of malignancy is extremely low, I think he said 1 in 10000, while risk of death in surgery is 1 in 500
-I asked him if I was his wife or sister would he choose GK or surgery for me, he said he would advise GK.
-My neurosurgeon also advised me to do GK and hes supposed to be the best in Quebec.

GK has low risks, short recovery and the same results....well according to the docs I met with.
It interests me how so many docs say such different things.

[Vivian B.]

Hi Tatianne,

I replied to your other post prior to your recent message. Sorry about that. I am also in Canada in Toronto. I heard great things about gammaknife. We have one centre here in Toronto as well. Good luck.

Vivian