WBR no longer necessary first step with Brain Mets

[Esther]

Last week, on Wed the the 4th of Jan. I realized that I had been having nausea for about 5 days, and that I was getting some slight headaches. I felt some waves of "I'm not feeling good" wash over me.

I got an immediate appt with my onc the next day Thursday the 5th. Within 2 hours I was having a brain MRI. Within 2 hours of that, it had been reviewed by the Tumor board at LLUMC, and my onc called me to let me know there was a 12mm tumor in my cerebellum.

None of the drs could believe that I had felt something wrong and been symptomatic with such a small tumor. I had no balance problems, had just been skiing the previous week-end testing out new skiis, and was rock solid on the slopes.

On Tuesday that 10th of Jan I had 1st opinion at LLUMC to discuss Proton. The Proton treatment requires 4 tiny metal plates be implanted under your skin on your skull. In most cases they leave then there permanently. There was heavy pressure to undergo WBR immediately, but that was already a decision I had made, not to do WBR now. So I really didn't appreciate the pressure.

On Thurs the 12th, I had a 2nd opinion at Scripps La Jolla to discuss Gamma Knife with Dr Hodegsen, who was rec. to me by Christine. Scripps La Jolla is a world class facility. We discussed WBR. He said that is no longer a first step recommended in every case, and certainly not in mine. Gamma Knife requires no implantation of anything.

I have a 3rd opinion appt scheduled for Wed. the 18th of Jan with Dr. Keith Black and Cedars-Sinai. Dr. Black is considered by many to be the top neuro-surgeon in the world, and pioneers alot of new techniques and procedures.

I will make a final decision on my treatment regimen after seeing Dr. Black on Wed. Dr. Hodgesen indicated that we could tentatively schedule the Gamma Knife procedure for the second week in Feb., as we already have a ski trip planned to Telluride, CO for Feb 3-11. That was a schedule he approved.

Dr. Hodgesen says he has an over 90% success rate with the Gamma Knife procedure, in that 90% of his patients do not need additional procedures to deal with brain mets. Also Gamma Knife can be performed multiple times if any addtional lesions should appear later on.

Everyone is shocked that I can ski, and feel no balance issues, and other than some nausea, now have no symptoms of brain mets at all. I am on Decadron to reduce the swelling around the lesion.

My first thought when I heard the news was Oh *&*&*, but now I'm in let's take care of this mode. I'll let you all know what Dr. Black has to add to the situation.

[michele u]

Esther,
Is this your first recurrence? Or have you had brain mets before? I'm so glad with the new technology it gives us many options

[Esther]

Michelle this is my first issue with Brain Mets. I just do alot of research and look at all my options before proceeding ahead.

I just wanted to post this information so that others would be aware of the fact that the thinkin on WBR has changed and is now being seen as more of an option to save for the future, at least here in some of the top US facilities.

[StephN]

Dear Esther -
Tough break - but you are with the program now.
Glad you posted about WBR being more of a back up for for those with multiple tiny mets. When my brain mets were found this time last year there was only talk of this route if the MRI on my treatment day turned up more spots - which it did not, thank the good Lord!

The targeted therapy for brain mets is becoming more and more the norm as it is for other in body mets.

You are doing well - and that is not surprising as I had NO symptoms with an even larger met in my cerebellum. Was not in the least wobbly and had no nausea either. That is the scary thing about this - it can sneak up on us like a thief in the night.

Your body gave you some warning - mine just ignored the things til they were caught on my screening MRI.

Have a great time in Colorado and then you will be all set when you get back to go after that met!

[RhondaH]

I will keep you in my thoughts and prayers. Take care, good luck and God bless.

Rhonda

Ester,
I've been posting on this topic for the past three years and I'm glad to see more supportive information as time goes by. It has been difficult emotionally 'fighting' a top rad onc, on my part, to get the tx's I've wanted.

Sending you wishes for continued great quality of life, and positive outcomes following your treatment choices...
hugs,
pattyz xoxo

12-1999: Age 50, Dx'd Invasive Ductal & Inflammatory. Two tumors, upper and lower inside quadrants R/breast.

1-2000: Mast., 6/26 pos. nodes. ER+PR-, Heu2+++ StageIIIb - 4rnds A/C, no rads (my choice & no medical ins.)

7-2002: Dx'd mediastinal node/s mets, (surgical biopsy), 'spot' on lung and pelvis. Arimidex briefly.

9-2002: Dx'd brain mets. (mininally symptomatic) Two lesions, 1.5cm, 6mm. SRS focalized tx successful. Refused WBR.

11-2002: Navelbine/Herceptin 4rnds for systemic mets, scans show NED.

3-2003: Progression of brain mets. 14 new lesions visable. Asymptomatic. Continue to refuse WBR. "Watch and wait " approach. Treat in small batches with two more SRS, two CyberKnife procedures through 5-2004. NED in body.

3-2005: Progression brain mets - maybe 10 new lesions, asymptomatic. (otherwise NED) Again 'watch and wait' approach until...

8-2005: Dizzy 24/7 in the course of just one day. Begin Temodar/Xeloda.

9-28-2005: Following 2 rnds, MRi shows response of nearly 50% shrinkage in many brain mets, including brainstem/pons. Dizziness gone.

11-28-2005: MRi duplicate of previous films- after 4rnds T/X, mets remain responsive w/ more shrinkage nearing 50%. Continue Temodar/Xeloda.


12-19-2005: Onc confers w/rad onc re: past scans. Determine that some of the 'new' lesions are not new at all, but old treated spots just vaguely visable.

[IVW]

I think that if you have several brain mets you still need WBR. I had three mets, two in one side and one in the other side of my brain. I did whole brain radiation first. Then 3 months later, I chose to do stereotactic radiosurgery ( same idea as gamma knife) on the remnants of the bigger one. That was last year. I have been free of brain mets for almost a year.

Isabelle

[Esther]

Different dr's will different opinions of course, but Dr. Hodgesen clearly communicated to me that WBR is not his first choice of treatment, even with 3 to 4 lesions on the brain.

WBR can have serious side effects, and he felt that Gamma Knife as a first line of treatment is better. He has a track record of over 90% success rates with BC brain mets not needing further treatment after Gamma Knife.

WBR can be given at any time after Gamma Knife, so it still leaves WBR as an option after Gamma Knife if it is needed. He also stated that WBR prior to Gamma Knife or cyberknife was the old standard of treatment protocol, and is no longer considered standard of treatment by many locations.

[Barbara H.]

Hi Esther,
First of all I want to wish you well. Secondly, you were right to go for a second/third opinion. The Dana Farber no longer recommends using WBR for brain mets that can be treated with surgery or sterotactic radiation.
It's just too bad that you can't get this treated this week and be done with it. You will not enjoy being on the Decadron after a while.
In any case, enjoy your ski vacation.
Barbara

[Barbara]

Esther:

I am glad you caught the brain met early. You are apparently in touch with your body. Were your cancer markers also going up? I hope all goes well for you and that you knock this brain met out for good.

Barbara

[Esther]

Cancer markers have always been accurate for me with the liver mets, but they did not go up for the brain lesion. That may have been because it was so small.

Don't really know for sure. You do have to be listening to your body in order to catch the subtle signals it sends. Mine were more like whispers, just glad I listened.

[IVW]

It is Dana Farber who says you don't need WBR? I got my WBR and then stereotactic surger on my brain mets at Dana Farber, Dr.s Bellon and Ramakrishna (Radiation Onc.). That was less than a year ago! Amazing how fast they change things. Actually, I think there is not just one way to do things. I had a slow longer course of WBR. Things were clearing up fine at subsequent MRI's. I chose to go ahead with stereotactic, it may not help in the long run. Time will tell.

I was encouged to read that WBR can make it easier for chemo. and herceptin to get into brain. Anyone know about this?

IVW

Gosh, Esther you are the forth person that, I have met in person, off the board that have brain mets! Sorry, to hear this. I am glad that you are posting on the latest info for the rest of us. Steph did last year. I am following all of this in case I ever need it. Wishing you well. Soon you should be NED again and enjoying the summer on that motorcycle!! hugs, Sandy

[Sandy H]

Gosh, Esther you are the forth one who I have met, in person, from this board with brain mets!! I am sorry to hear this. Thanks for keeping us posted on the new info. I know Steph did last year. I am following this closely in case I ever need to use it. I wish you well and soon you will be NED and will be enjoying the summer on your motorcycle. hugs, Sandy

[Barbara H.]

Here is my story. I had a craniotomy for a 3 cm met in my pre-frontal cortex in May, 2004. Dr. Black at the Brighham was away at the time so I decided to have Dr. Wu at the BI remove it. I followed up with sterotactic surgery to mop up what may have been left. At that time the radiologists recommended WBR to give me a better chance of targeting any mets that could develop in the future. I decided not to do it because of the possible long term side effects, and I wanted to continue teaching third grade. Later when I had my follow up at the brain tumor clinic at the BI I learned that they were no longer recommending it for everyone, especially younger people. I am not that young. When I discussed it with my oncologist, Dr. Parker, at the Dana Farber, he also said that Dana Farber no longer supports it for everyone. This past November I had another scare. My routine MRI showed probable recurrent disease to the same spot. This time Dr. Peter Black from the Brigham did the surgery. It turned out to be radiation necrosis. I think each case is different. That's why the physicians in the brain tumor clinic review each case. I think the new standard is that WBR used to be always given and now it is no longer routinely given or recommended.
Best wishes,
Barbara H.

[StephN]

Thanks for the story and the confirmation about holding out WBR for later if there are only very few mets that can otherwise be dealt with.

On the icons, you are using the "thumbs down" when I think you mean the "question mark." Question mark is in the blue circle below the winking smile in a blue circle.

I was also glad to hear that you only had radiation necrosis and not new tumor growth. I may face the same question.

[Esther]

Thanks all, I posted this thread so that people would know that there are now differing viewpoints on this issue. It is important to be fully informed before deciding on your course of treatment.

I see Dr. Black at Cedars Sinai today, and will make my final treatment decision after meeting with him.

I feel good about making all the research, this will be my 3rd opinion, and feel like I will be prepared to decide what is best for me.