Not what we wanted to hear, but not as scary as it sounds (maybe)

By | Sun May 6, 2018

Mom got a phone call on Friday. The results of her head CT were in. They were not what we wanted to hear – but I’m glad the doctor was able to give her the results over the phone. I’m also glad that I had a conversation about the potential results before she got the phone call.

I have a couple of friends who have experience with brain metastasis – that is, when the cancer has spread to the brain. It sounds really scary, especially when you don’t know anything about it. Fortunately, my friends have helped me understand that although it sucks, it isn’t as scary as it sounds.

My friend Dawn Flores, wrote this letter that I shared with mom, outlining Dawn’s experience with breast cancer that has metastasized to her brain:

i had 3 brain tumors in 2015 the largest was 2cm. They suggested cyberknife. i was pretty scared at 1st but the radilogist oncologist was very good at talking
about the whole procedure and putting me at ease. He prescribed ativan as well.

1st I had to have another MRI that took 25 minutes this made a map for him to use.

I had another appt to make a mask that would fit snug over my face. It was a plastic that could stretch when wet. It is a very fast appt to have the mask made.

I then had my radiation appointment a separate day. I just showed up and they played music for me and since I did take my ativan once the mask went on I was able to sleep. It took a total of 45 minutes. I only needed one appt for all 3 spots.

There has never been any pain. I was fatigued a while later but that was all. I did have a few spots (size of a nickle) that my hairdresser noticed that had hair missing. it grew back but I never really noticed the spots since my tumors were in my cerebellum so lots of hair back there.

It was one of the easiest if not the easiest treatments I have had.

I had 4 spots in 2017 that were not pretreated so they did that whole process again. I had a littlebit of a headache for 2 weeks after. I let the md know and they said I could take prednisone to help or just wait it out. I decided to wait it out and the feeling went away.

It was scary for me to hear that the cancer was in my brain but it was an easy procedure to clear it up. I hope your treatment goes smooth and you can
continue to live the life you love.

Hope this helps,
Dawn Flores

We don’t have any specifics about what mom’s head CT showed, just that it showed something that the oncologist believes in metastasis to the brain. I hope to get more details on Monday.

On Tuesday, mom will see the clinical trial doctor, who is also a kidney surgeon. We will find out then if or when surgery might be an option. The oncologist did specify that brain mets would not exclude her from the clinical trial, which is good news as that is an issue with a lot of clinical trials.

I am home in California now, recharging my batteries. I realized that I know how to do self-care when I’m the patient, but I don’t know how to do it when I’m the caregiver. It has taken me a couple of days, and a couple of hikes with friends, to help recharge. Now for two weeks of my medical appointments, while checking in with Mom over Facetime. She sounds like she is doing well – he clearly has more energy than she has had in a long time, and her pain is under control. Yay for that!

One thought on “Not what we wanted to hear, but not as scary as it sounds (maybe)

  1. Sharon

    I was so happy to read that the brain lesion does not exclude her from the clinical trial.

    Reply

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