radiation necrosis or tumor?

[rosie]

I had gamma knife a year ago for a brain met and had been doing well. My last scan in Feb was great. I just had a routine scan this week and have an area that lights up in the same area as the tumor that was radiated. Luckily, I have no new lesions. The rad onc says she thinks this is something called necrosis or dying tissue from the radiation but she can't be sure it isn't new tumor and that the radiation didn't work. So they are going to watch it and rescan in 6 weeks.

This of course makes me nervous! Has anyone heard of this? She says that they can't retreat an area once treated and if it turns out to be tumor, I would need surgery to remove it.

Help, I am freaking out!

Thanks all,
Rosie

[imported_Joe]

Rosie,
What type of scan are you receiving?

My wife Christine, had exactly the same experience. She had GK in August 1999 and about a year later, a follow up MRI showed some growth. Her rad/onc called and told her to "get it removed and see me in a month" . By the time Christine hung up the phone, he was no longer her onc.

She then made an appointment with another rad/onc in San Diego who examined her MRI's and referred her to the Head of the Radiation Oncology unit of the hospital. He examined the MRI and told her that he had seen that before and suspected that the tumor was necrotic and he scheduled her for follow up MRI's every 6 weeks.

Christine then made an appointment with Dr. Keith Black in Los Angeles who confirmed the diagnosis.

The first follow up MRI did show slight growth, the second one showed that the size had returned to where it was previously. When she had her third follow up, the doctor who read the scans called her to tell her that he had seen nothing like this before. The tumor had completely diasppeared and he could find no evidence that any existed.

Warmest Regards
Joe

[rosie]

Dear Joe

Thank you so much for your response. It is so confusing. I too am having MRI's and it sounds much like Christine's. It has been exactly a year since my radiation. I too am going to get other opinions. I think the reasons that I am frustrated are that the rad onc basically said "Well this is just a little smudge on your MRI, your lung mets are going to kill you first" so I was wondering if she was sort of not following through on the brain stuff in an aggressive manner. I have a friend who had a brain met from lung cancer that was removed and then radiated and several months later it showed up again and they took her right to surgery and found a few active cancer cells and the rest was necrosis. So I was wondering why they were just recommending scans with me unless they were sort of giving up.

( It didn't help that there were no treatment records in my chart, she couldn't remember at first how she radiated me so how on earth could she say this was within the radiation field? )

I just felt that because I have other mets, they were going to let this "smudge" go and that didn't feel right to me.

Do you think I should be seeing rad oncs for second opinions or neurosurgeons? I don't think I can get in to Keith Black, he is very full.

I SO appreciate your input because I just know I can trust your information.

Regards,
Rosie

[imported_Joe]

Rosie,

Where do you live? I do know that Keith Black's group will review your MRI's and medical records and give you a second opinion based on that. When Chris went to see him, that was all he did anyway.

I can recommend Chris' rad/onc here in San Diego.

Regards
Joe

[rosie]

I do live within a couple hours of Cedars but I called. The soonest appointment I could get with his associate was 2 weeks. So I took that but of course, I am sitting on pins and needles.