I was wondering if anyone has ever heard of a treatment modality called CyberKnife? It's a stereotactic radiosurgery system. Feeling kind of blue that my Aunt is slowly slipping away, I remembered something I heard on the car radio years ago and came home and researched it. I stayed up one night last week, printed out reams of paper on it from various sources but the information from all the websites seems to be similiar. I still don't know EXACTLY what it. In any case, knowing that my Aunt has refused all types of traditional therapies thus far, I faxed my Uncle everything I had printed out. I hadn't heard from them in nearly a week, so I tried to put this CyberKnife thing out of my mind. I just spoke to my Uncle and he has already requested every last medical document on my Aunt's case from day one from the previous hospital that was treating her and he has over-nighted it all to the one hospital here on Long Island that has CyberKnife. We are now waiting to hear that they have accepted Aunt Rosemary into their program. She is WILLING! Now I want to know every last thing I can about CyberKnife.

Help? Does anyone have any experience with CyberKnife?

Hello Lisa

If it is the same treatment as in the UK the Cyberknife is also known as Gamma Knife treatment. I have had this procedure at a private clinic in London for a tumour in my skull (not brain) and it is my understanding that it is only used for inoperable tumours in the head. I will try and find the videa link so you can see the operation in action. This will have to be in another post as I don't know how to attach - or let me have your email address. It is a 'one off' massive blast of radiation with pin-pint accuracy on the tumour. They screw a metal cage to your head and then they put you into an MRI scanning tube. It takes quite a while (depending on the size of the tumour I suppose) and apart from the screw holes being a bit painful (they do numb the areas) there are no other side effects. As far as I know my tumour has shrunk considerably. You do have to have a level of 'wellness' (for the want of a better word) to undergo the treatment, but the medics will be able to assess your Aunt. I'm assuming this is the same treatment - is this what you were thinking it might be? It certainly saved my life and I just hope it is made available for your Aunt too. Regards Brenda

Try this: http://www.radonc.jhmi.edu/jtml/gamma_knife.html
Then click on the gamma knife heading, then click Broadband (or which applies to you) Hope it works!

Thanks Brenda, I'm going to read every last thing I can find on this. Yes, I do know that originally it was used to treat inoperable brain or skull tumors, but now it's used for cranial, head & neck, skull, spine, bone, liver, pancreas, lung and prostate tumors. The machine and the department in Winthrop Hospital here on Long Island is pretty new. They no longer have to put you inside of an MRI machine. The CyberKnife unit rotates around the patient. It also compensates for breathing, swallowing and any other voluntary or involuntary motion of the body.

I liked what the nurse coordinator of the department said to my Uncle Bob when he spoke to her. She said "out there, they use the word terminal. In here, we don't use that word."
While I'm certainly not putting all my eggs in one basket, I am overjoyed that my Aunt said she'd go willingly! I'm happy she's willing to try ANYTHING that's medically verifiable.

Let's hope and pray she gets accepted. We'll find out very soon.

This is an article titled "CyberKnife hits tumors with pinpoint accuracy" that I hope I transferred the site correctly :


http://gainesville.com/apps/pbcs.dll/article?AID=/20060908/LOCAL/209080320/1078/news

It was written by Diane Chun for the Gainesville Sun, so it can be googled that way also.

Here's a link to the inventors of the CyberKnife:
http://cancer.stanfordhospital.com/forPatients/services/cyberknife/default

The newer generation of the device are a robotic arm with a miniaturized linear accelerator.

It is actually quite different from the GammaKnife and certainly more versatle.

The original Gamma Knife was a huge contraption and they bolted a device to your head that resembled a collander that provided the beam entry ports. The design limited it to mainly brain tumors.

See http://www.ucsf.edu/gammakf/

I don't believe that anyone here has had Gamma or Cyber Knife treatment specifically for head & neck cancer although some have had the procedure for brain metastesis.

We are very disappointed, to say the least. The CyberKnife board has fully reviewed Aunt Rosemary's case and has rejected her as a candidate saying that this type of radiation would do her more harm than good as far as her mouth, tongue, jaw are concerned and the tumor in her lung is TOO SMALL (a half a pea) to be radiated by the CyberKnife.

I've gotten my Uncle the contact information for the Monter Cancer Center, a branch of North Shore University Hospital and I'm hoping they get an appointment there asap. My Mom is an eleven year survivor of Stage 2 breast cancer because the of the excellent care she received and continues to receive at Monter.

Right now, I want to stand underneath the elevated train tracks of the Long Island Rail Road and scream my head off as the train goes by!!! Trying to find a treatment modality that Aunt Ro will say yes to, has become a full time job and yet I can't stop myself from trying to find doctors, a center, a treatment- that she'll agree to.

Lisa,
If she doesn't want treatment, there's not much you can do except have 2 doctors declare her mentally unfit and force her into treatment (which is VERY unlikely) and besides it would have to go to the courts first anyway. You did mention that she is "end stage" with mets to the lung. There are people here who have been faced with the unfortunate decision to withold treatment and/or nutrition.

Screaming under the train might be good therapy for you. It sounds to me like Aunt Ro has made her own decision on her destiny which is her right. You may need to step aside and respect it at some point.

My Aunt has not made any type of decision at all.
All she does know is that she doesn't want to die, but she also won't go for chemo and radiation either. My Aunt has been VERY depressed and angry since a short time after her diagnosis, but she and my Uncle believe in allowing each other to be themselves and to respect the privacy of their individual personal decisions. To not force their will on the other.

What's ultimately going to happen is that she will be too malnourished to survive. I do believe with all my heart, that is what will kill her. She's just over 105 pounds now and she's having them yank the feeding tube on Monday.
She's out of her mind with pain, so they've upper her dose of Fentanyl. When she says "yes" we run to cooperate. When she says "no" everything grinds to a halt, appointments get cancelled and weeks and months go by. I haven't said "hey this is what you have to do" and neither has Uncle Bob because you can't force someone to do anything. I wish she was capable of making a decision, but she's not. She wants to live but she doesn't want to cooperate. It doesn't make any sense to me at all, I come from a very different family.

I can use a good scream right about now.

:-/

Lisa, I don't know what else to say to you other than the scream sounds like a good idea to me [ and also checking YOUR bloodpressure on a regular basis] It doesn't sound like Aunt Ro wants to make decisions and you all certainly can't force her without some legal steps. Sorry your family is having to go through this.Amy

You also have to consider that oftentimes the lack of a decision IS a decision.

I understand fully about boundaries and not wanting to impose your will on another (or demand ultimatums or agendas - the walls will go up!) but it is entirely ok to share your feelings with another. Uncle Bob can share his heartfelt feeings with Aunt Ro and you can too. Just don't tell her what to do, rather what her potential loss in your life will mean to you.

It sounds like they have a pretty healthy relationship but a little weak in the (sharing) feelings department. Not that the feelings aren't there but they must be spoken or written. One must never assume that the other can read your mind - no matter how many years you are together.