Radiation Surgery Questions

[gwilks98]

Long story short: My dad was diagnosed with a very nasty form of brain cancer: glioblastoma.

We can probably count what's left of his life in months, not years.

He had brain surgery to remove as much of the tumor as possible. (75-95% is what we were told originally, then 90%, then we saw the MRI today and it looked closer to 75%.)

Chemo plates were put in his head to kill off what it can of the remainder.

Now we need to discuss radiation surgery to kill what that can.

The options that were presented were:
Gamma Knife at Barnes Jewish (top ranked hospital, older machine with material nearing its half life)
Trilogy at St. Anthony's (not top ranked but much closer to home, brand new machine that should be ready in 1.5 weeks).

My parents have a severe hangup with Barnes, thinking it doesn't live up to it's reputation.

Aside from that, is there anyone out there that can give me an honest and truthful comparison of the two machines and which one you'd recommend?

I can only find sales fluff for both machines, and both are touted as the greatest thing ever.

The same doctor would be working the machine at either facility, but he had nothing good to say about the gamma knife procedure. There's something about him I don't trust, but it's not my call. My family is too emotionally involved in the grieving process to see what I saw: dodging questions, not maintaining eye contact, etc.

Either way, I have to respect my father's wishes, but I want to make sure he was presented all the facts: not the ones a doctor with side agenda would present.

Thanks.

[renovation]

is there a way for you to get a 3rd opinion from another doctor.
i heard of a treatment for brain cancer. were they use radiation pellets and a ultra sound and just treat the area were its needed. i dont know much about it as sunday was the first time i heard about it . and it was two friends talking and i was just there as a 3rd party . im not sure if it help your dad .or avail in your area .but i know its avail at royal oak beaumont hospital in michigan . also i hope the best for you and your family and dad

[chrissy]

I am so sorry you and your family are going through this.

Let me call my mom tomorrow and see what she knows about the hospitals and their equipment. I am vaguely remembering her talk about different proceedures for my Aunt a couple years ago. I don't know if these were a couple of her options or not. I will find out though.

[Markel]

I don't know if it is related to either of the options you mentioned (or even applicable in your father's situation), but when driving to Atlanta (from Chicago) and back last week I noticed some billboards (I think it was in Kentucky) touting the CyberKnife. It looks like it is available at St. Louis University Hospital: www.cyberknifestlouis.com/

Your family is in my prayers.

[Houdini]

They're in my prayers as well. I'm sorry I don't know much about the latest focused radiation technology. I did have an acquaintance who had a benign tumor removed (prolactinoma) with a gamma knife with good results. But GBM is a tough tumor. I agree with looking for every opinion you can, and exploring all the cancer-focused hospitals as well (MD Anderson, etc.)

Hope all goes well, and again your father and family are in my prayers.

[Daedalus]

When a friend of mine had leukemia I did a search and found some cancer forums, one of which I found somewhat helpful. Can't recall which one, but it was a fairly easy google find.

[gwilks98]

<cyberknife snip>

I've heard a little about it, but the neurosurgeon recommended we stay away from the staff there at SLU. He said he did his residency there and wasn't comfortable with their knowledge of their own equipment.

I will definitely look into it though, for piece of mind's sake.

Insurance, money and comfort are all issues. It would have to be a miracle cure for it to convince my dad to travel.

[chrissy]

Dr Needles never gave my aunt those options - she had too many places for these proceedures. Mom did say she never had a bad experience at Barnes though. But Rhonda had chemotherapy before she passed.

She also said to check/contact the american cancer society for better comparisons. I would say the mayoclinic also.

I am sorry she wasn't more help.

[DarkFury]

Just wondering...

What are your Father's wishes?

If this tumor has been determined to fatal in months, not years... does he still want to go through with the treatments? Or is it a virtual lost cause at this point?

What is the percentage that the treatments would cure him? Would he have a normal life after the treatments?

More or less... on issues like this, I just wonder about these treatments. I guess if I knew that my time was up... and that for the expense of these treatments to buy only a few more months of much less than full quality of life, I'd rather spend the time I had making the most out of what I still had and making sure that my kid(s) have everything they need from my legacy.

Honestly, there is nothing worse than watching your loved ones die slowly with all the "experimental" treatments trying to give them hope of a cure... all the while draining the finance and emotions of the entire family.


My heart goes out to you on this... I do know what it is like to lose your Father. May your family have strength in this time of suffering.

[cheapie]

have you contacted he livestrong foundation? answering these questions is part of what they do. http://www.livestrong.org

i had an acquaintance who's wife is battling cancer. he signed up and was quickly contacted by a volunteer who handled questions just like yours. she spent an hour with him getting contacts, reviewing options, etc. try it!

[gwilks98]

Just wondering...

What are your Father's wishes?

If this tumor has been determined to fatal in months, not years... does he still want to go through with the treatments? Or is it a virtual lost cause at this point?

What is the percentage that the treatments would cure him? Would he have a normal life after the treatments?

More or less... on issues like this, I just wonder about these treatments. I guess if I knew that my time was up... and that for the expense of these treatments to buy only a few more months of much less than full quality of life, I'd rather spend the time I had making the most out of what I still had and making sure that my kid(s) have everything they need from my legacy.

Honestly, there is nothing worse than watching your loved ones die slowly with all the "experimental" treatments trying to give them hope of a cure... all the while draining the finance and emotions of the entire family.

From what I understand {
There is no hope for a cure. All treatments and trials out there are attempting to delay the return of the tumor, nothing better.
It will come back, with a vengeance, resisting all treatments and take him pretty quickly.
If he did not take any treatments, he would have died by now. The surgery probably bought him 1-2 months. Then it's a random throw of the dice to determine how long we have until it comes back. Then we're talking weeks.
}
So...I have no hope for a cure. I'm putting my hope in making sure we get to do things and talk about things we always wanted before it takes him completely.
Right now the decision is whether to do the standard treatments and last 2-?? months or do try a experimental treatment soon and see if it can give something better.
It's all happening so fast, my dad's a bit overwhelmed on which way to pick.

This sucks.

[The Happy Squirrel]

ever consider trying the mayo?

[Napoleon54]

This really does suck.

If it was me, I'd go for any experimental treatment that's available. Anything that's been approved for testing on humans by definition has to be pretty promising. The preclinical testing and review process is extremely rigorous. It could be an opportunity for him to be one of the very first people to benefit from something completely new and revolutionary. At the very least, your dad is in a unique position to help others in a way that very few people can: by volunteering for a study that will advance our understanding of how cancer works and how we can treat it. Clinical trials are an integral part of the fight against cancer.

Regardless of what decision is made, you'll have a very tough few months ahead of you. You have my sympathy and I wish you the best.

[booger73]

Sorry to hear the news about your dad..

I would go St. Anthony's based on
1) closer, from what you posted (very important)
2) the possible 'hangup' with Barnes (rep isn't everything)

Not that I'm up-to-date with the technology but it's very unlikely they will be significantly different 'overall' in the whole 'scheme'

And not to totally intrude, but please look into and discuss
1) hospice - these people are so wonderful, and in our day and age, we do this way too late.. it doesn't mean he can't still undergo treatment and other things most of the time (95%+)

2) i know it's hard to think about, but his wishes regarding DNR and how much stuff he really would want to be done should be discussed.. (not just cpr, etc.. but what if he gets a bad infection, what if he gets to where he can't swallow, etc)..

Please let us know if we can do anything..

[gwilks98]

We know what his wishes are with DNR, but thanks. We're not sure what to do about the hospice yet. It's definitely not to the point of that yet.