Brain Mass

[Dianedack]

Hi everyone

Just got this news and trying to come to terms with DX. Any advice or encouragement would be so gratefully received.

Diane

[Mary L]

Diane, I was so sorry to read your message this morning. I really am at a loss for words. I will pray for you Diane, and I hope there is something they can do to shrink the tumor. God bless you and I send my best wishes. Mary L

[Jackie07]

Diane,

Please get a second, third opinion about the 'inoperable brain mass'. Can you get Tykerb? I'll be praying for you.

[StephN]

Dear Diane -
I am sure there is a noninvasive form of radiosurgery that you can get. Look into Gamma Knife, Cyberknife and the IMRT type treatments.

They probably put you on a steroid already to bring down any inflammation associated with that mass.
This may lessen some of your symptoms.

Many of us here have been treated with the above "weapons" and are here to keep talking about it.

If you have to travel to a major cancer center it may open up more possible treatments and give you the best chance to win this one. (I realize you are in Perth, West Aussie, but there may be another center in that vacinity you could check in to.)

[Joan M]

Diane,

I would agree with both Jackie and Steph.

I also had a brain met.

Joan

[krisvell]

Diane,
I am being treated for a brain met with the Gamma Knife for a mass that can't be operated on. They are saying the control rate (not growing bigger - is 98%) & 66% chance of shrinking. I am hoping for those results. There are other options besides surgery. See how well Joan and StephnN are doing.
Sending Hugs and Prayers your way,
Kris....

[Elizabethtx]

Diane,
We hear the despair in your post. Another opinion, right away! There are so many options out there. Don't let the first doctor just right it off as "inoperable". That may be so, but drug combinations are worth the chance to shrink the tumor. We are cheering for you in the background and will support you with info as well as prayers and good wishes. Stay strong!
Hugs, Elizabeth

[ElaineM]

I am sorry to read your news. I never had a brain met, but I think the other members who replied before me gave you some excellent suggestions.
Hang in there !! Keep putting one foot in front of the other no matter what !! Take good care of yourself.

[Trish]

So sorry to hear the news. Do ask about targeted radiation. I think there is Gamma knife available in Sydney (Maquarie University private clinic and and a public hospital-will send info by private message).You can also ask about Tykerb which as you know crosses the blood brain barrier and is funded by PBS for use with Xeloda. Nowadays you can revert to Herceptin if Tykerb no longer works but the two are not funded together.
I do hope you are bearing up OK. Warmest regards,
Trish

[Dianedack]

Thanks ladies I am getting that second opinion from Macquarie Hospital in Sydney for gamma but the cost is $25000!!! Need to find out about a public hospital that might have the gamma. It may not be suitable for my tumour so might need linar. Awaiting anxiously appointment with Radiation oncologist in Perth on Tuesday. Have a list of questions so should no more after the appointment. Cannot start any more chemo for the other mets until radiation done, so still on Herceptin which no longer works for me. Trying to keep positive but this is devasting news especially after the birth of my fourth lovely Grandaughter. Hate this illness.

[Mary L]

Diane, I am so sorry this happened and I am praying for you. I hope you are able to get the treatment you need. Mary L

[tricia keegan]

I'm so sorry Diane and hope you can find a public hospital that can treat this for you!

[hutchibk]

If you can't get Cyber, consider IMRT. It is the type of targeted high dose stereotactic radiation that I have had for my brain mets, one being 12mm as well. I have had very good results, equal to Cyber or Gamma. They are similar technologies with minor differences.

Here is where it is available in Sydney...
http://www.cancercare.org.au/www/html/871-intensity-modulated-radiation-therapy-imrt.asp

[Trish]

Diane
The Royal Prince Alfred Hospital in Sydney is a public hospital and they do stereotactic radiosurgery (not sure exactly what machines but I think they do have a frameless system-will send you their info sheet). The Peter Mac Callum Cancer Institiute here in Melbourne is also a public hospital and I am treated there as a private patient. They also do stereotactic surgery in some circumstances (1-3 at most brain mets) but don't have a frameless system.
Trish

[Kavy]

Diane,
Sorry I'm late to reply, and I'm so sorry for your news. I hope you will get the right treatment that will zap this met for good.
I also have brain mets, diagnosed this year, and I was treated with Xknife, a SRS similar to Gamma Knife.
I'm glad you are getting a second opinion, sometimes what is inoperable for one doctor is operable for another. Besides, your met is small, and probably any SRS will do the trick, I just hope you find a public hospital to do the procedure.
I know brain mets diagnosis is scary, but after you have a treatment plan, and start the real treatment, you will feel much better and more in control. Hang in there.
A big hug,
KarlaV.