Brain mets and Gamma Knife

Hi there,
I am (again) writing on behalf of my cousin whose her+ breast cancer has advanced to her brain. She was given whole brain radiation and promptly told that she has max half a year to live. However, as I read the messages on this board, I get a very different picture.

She received WBR for five days and was told that the treatment cannot be performed another time due to damages for the brain. Yet I read experiences of four weeks on WBR?

I don't think a treatment called Gamma Knife has been discussed with her. Can it be done in all cases of brain mets? She has several, but some women tell they have received gamma knife treatment for 9 brain mets?

She is on Herceptin, Navelbine and some other chemo. Earlier she has been treated with combinations of Taxotere and Xeloda, and before that with Herceptin and some other chemo. She has occasionally been better but her desease seems to be very aggressive (or the right drug combination hasn't been found yet).

Thank you for this forum, and thank you Steph for your thorough (with photo) account on how the treatment is performed!

I am eternally thankful for any responses, even negative ones.

Emma from Finland

Emma,

Brain radiation is not mesaured by days but by total dosage. It seems unlikely that your cousin could have received the total maximum dosage in only 5 days. Finland may have a lower treshold, but I am only speculating.

Generally WBR will be effective in taking care of most mets, but occassionally either a stubborn one exists or new individual ones will appear. Gamma Knife is used to treat individual tumors. Gamma Knife treats individual mets whereas WBR treats the entire brain.

There is a limit in theory on how much Gamma Knife treatment a person may get in their lifetime, but Christine's rad/onc who has been doing this for over 10 years has never had a patient who exceeded this dosage.

There are some exciting trials in this country that hopefully will be successful. Dr. Mark Pegram in Los Angeles is doing a trial of Herceptin/Lapatinib in combination and Dr. Winer in Boston is doing a trial using Lapatinib to treat brain mets.

Warmest Regards
Joe

[StephN]

Dear Emma -
Glad you found my posts on the Gamma Knife procedure. It actually was "invented" in 1968 by a Swedish neurosurgeon. This should be something that Finland had experience with.
This treatment is not always indicated. It will depend upon the location and number of the mets. Mine were not in difficult areas and I did not even know they existed until the MRI revealed them.

It is something to bring up with your cousin's doctors and maybe you will have to seek a second opinion finding out who the top doctor is in this field.
I wish your cousin well and hope that some drug can be found that will arrest her disease.
I agree with Joe on the fact that your cousin does not seem to have had enough WBR to take care of the mets she has. Most everyone in this country had 20 or so doses at least. This is to give the best chance of being effective.
Her docs sound like pessimists to me!

Thank you for your replies!
My cousin seems to have gotten the maximum amount of radiation, at least according to Finnish regulations.

I have searched the web for gamma knife treatments, but so far it seems that closest place providing the treatment is in Stockholm, Sweden. But that might be due to lack of updating the information in the web. At least I made her promise to ask her doctor.

For what I understood by reading the articles in the web (by googling "gamma knife"), there are no clear limitations for using gamma knife, one interview stated that as many as ten mets can be treated. My cousin says she has many but does not know how many exactly. However in all lobes.

I have also had my share of fighting with doctors (had Hodgkin's ten years ago) so I try to encourage her to question their decisions over and over again without giving false hopes. Sometimes you would just want to sit back and trust them to know best...

I only wish doctors would finally understand that at least 50% of recovery is emotional strength and that should never be taken away from the patients - although keeping them informed of realities is essential. But both can be accomplished!

Thanks again,
Emma

Emma,
The link below is a lsit of European locations for Gamma Knife. Fortunately, it is done on an outpatient basis and takes about 4 hours. I am certain that follow up can be done locally.

http://www.elekta.com/healthcareinternational.nsf


Warmest Regards
Joe

Thanks Joe,
the link unfortunately confirms that there is no such treatment in Finland. Stockholm is not far, but it might be difficult to persuade them to treat a non-Swedish patient. In Scandinavia, hospitals are part of public health care, which means that health services are provided for everybody but on the other hand makes it more difficult to move around after special treatments.

I only hope my cousin is up to challenging her doctor to get an opinion from Sweden. I am sure it can be done.

Best of everything, and thanks again!
Emma

Emma, to my knowledge, the University Hospital in Turku does perform stereotactic radiosurgery. Pls contact Dr. Heikki Minn, MD at +358 2 313 2819

Pls also check out the following link:

http://notes.utu.fi/ty/webexper.nsf/0/5613...32?OpenDocument

Best regards,

Jay

Thanks, Jay!
I was also under the impression that Turku has the most advanced systems of Finland and it so happens that I live in Turku!

How wonderful, I'll check it out and hope that it could be an option for her.

Keep you posted,

Emma