Radiation Treatments - brain mets

[jones7676]

I am having a hard time making decisions about which approach to use in regards to radiation. Recently, I had one met removed - and I do know that there is likely be more...... the radiation oncologist recommended I have WBR to irradicate any further cells that may be there even though none were noted at this time.
I am quite uncomfortable with the unpredictability of the results of WBR. I am looking for anyone who is willing to share the choices/experiences with me. Thanks for your support.

[pattyz]

Dear 'jones',

I have had brain mets for four+ yrs. A total of 24 tumors. At first dx there were two that I had treated with SRS, the headframe type focalized tx similar to Gamma Knife. I was indeed warned that there could be more that would show up without doing WBR.

Six months later the MRi showed another 14. But, I had no symptoms. These 14 brain mets were then treated (MY CHOICE) over the course of the next 12 months with two more SRS procedures and two CyberKnife tx's. I faced off with rad onc many times about refusing WBR. A hard thing to do, when speaking with THE EXPERT.

About a year later ('sp. 2005), I was dx'd with an additional 8 brain mets. Was then told that I was no longer a candidate for focalized rads as they are cummulative. Yet, WBR was once again recommended. Now that was a real brain twister to me!!!

I still had no symptoms at that time and waited and watched progression. Finally in Aug. of '05 I began a chemo cocktail cooked up for me by my onc with two drugs I had given him research material on. I also became dizzy 24/7 just a few days prior to beginning my chemo schedule.

After less than a week on my Xeloda/Temodar the dizziness decreased and was gone in 7 days.

Mri's showed near 50% shrinkage TWICE, with no new lesions. The following 2 MRis' showed stable. I then went on chemo break with 2 MRi's showing 1: stable 2: minimal increase in two of the 8 lesions.

I have now been back on chemo with Mri again showing decrease in all 8 brain mets, no new lesions. I have been responding to chemo in the brain now for just over a year with one short break.

My tumors have been throughout my brain. Twice (one now) on brainstem/pons. The largest was at first dx: 1.5cm. Others ranging in size from 3mm to 12mm.

I had 24 hrs to do some research after my intial dx of brain mets... That is all it took for me to decide to refuse WBR. I have had no regrets; only reinforcement from further research and personal stories in my decision.

Hope that is helpful and what you were looking for...

Best to you,
pattyz

[rinaina]

Could someone please tell me what WBR is? I am still not familiar with some of the abbreviations used on here. Thank you.

[jones7676]

Whole brain Radiation - they radiate your whole brain to kill any other cancerous cells that are there.

There are many other options. For instance they can target radiation to the spot where a tumor is found instead.

There are also several other types of radiation such as gamma knife etc...

[Susan2]

WBR - whole brain radiation.

In May, they found 11 spots on my MRI. No symptoms. Like you, they wanted to do wbr. Because of the scary stuff that I had read, I initially refused. I went for a second opinion with the same answer. I did research and then went back to my radiation oncologist. I told the dr. that I wanted to do everything possible to reduce the possibility of compromised brain function. I was going to be around a long time and would need it.

Working with another radiation researcher, they came up with a modified plan. This plan spread the radiation over 24 days instead of 14. They used a lower dose one at which the dr. said that the brain could recover from in 6 hours. For the areas with spots, they did the radiation the entire 24 days. For the areas without spots, they only did radiation for a portion of the time.

During the radiation, I was on daily Temodar. The Temodar was only during radiation.

3 weeks after the final radiation treatment, I had another MRI. Some of the spots were gone, some were smaller and the remainder unchanged. Then, I had a subsequent MRI a couple of weeks ago. Everything except one tiny spot is completely gone. The dr. believes that the spot is a scar.

I have had mild fatigue - nap in the afternoon. I have noticed no decreased mental or physical functioning. I did lose my hair, but it has started growing back.

I know that this is a very difficult decision. I wish you the

Best of everything,
Susan

[Barbara H.]

In May, 2004 I had one brain met to the prefrontal cortex that was 3cm. I had surgery follwed by sterotactic radiation. I refused whole brain radiation. I had surgery last November for what they thought was a recurrance to the same site. It turned out to be radiation necrosis. So far I have had not had a recurrance, but I know by now that I would be (over two years later) having late radiation effect if I had had WBR. At the time, it was customary to offer WBR because it was felt that long term survival with metastatic breast cancer with brain mets was poor. I had mets everywhere (lungs, liver, nodes, skin) in 2004 except in the bones. Now I have 3 small bone mets that are responding to Navelbine and am NED everywhere else. I also teach third grade full time and take graduate courses. I could not have continued this type of life if I had opted for WBR at the time. I may need it down the road, but with only one lesion I would opt out of WBR and receive frequent scans.
Good luck with your decision.
Barbara H.