Remember one of Mary's legacies

[Lisa]

For those of you newer to this site, our friend Mary did many of us a great service without meaning to. She demanded a brain MRI when she had no real symptoms. That MRI unfortunately turned out to be the messenger of her many, many brain mets, one of which led to her paralysis.

After Mary's test results, many of us went for our own brain MRIs, even with no symptoms. And several of us learned we, too, had brain mets.
I am one of them.

So I urge all of you Stage IV ladies to include brain MRIs (better than CTs) in your regular scans. Statistically, about 1/3 of us will someday have brain mets. But like everything else, the earlier found, the earlier treated.

Love and light here and above,

Lisa

[JoJo]

Like Lisa, I had a brain MRI that was positive for a single met, and I did NOT have any symptoms.

The earlier caught, the easier treated proves to be true; for example, gamma knife can treat brain tumors up to 5 cm. Higher than 5 cm, I believe craniotomy is almost automatically the next treatment step, unless you have multiple mets, which may lead to WBR, instead. And you may know that we can only have WBR just once in our lifetime. There is no limited numbers on gamma knife treatment.

In my case, I usually have a brain MRI follow-up every 3 months to keep track of my original met.

[JoJo]

PS: When I had my very first brain MRI post-chemo, I was still at stage 3, so I was NED. I think that about three brain MRI's later, it then was the messenger of my brain met, which led me to be stage 4 officially.

[Janelle]

Lisa,
You are so right. It was Mary that convinced me to 'fake' symptoms to get the Brain MRI... here I am, another person with no symptoms and 3 small brain mets. After WBR this month, I'm so thankful to her for insisting that I get the MRI.

She will be missed on so many levels.....

hugs,
janelle

[wlward]

This alwas starts me to worry again. I asked my onc about a brain mri and he said they get too many false positives. I am thinking of suggesting it again tomorrow. I guess I am stage 3 as have had local recurrence but does skin mets make me stage iv. I need some advice before tomorrow if any one is on line tonight.
Thanks all
love
lindaw

[StephN]

Hi Linda -
Sorry to to have the chance to reply sooner.

Curious - I have never heard my med onc mention anyting about "false positives" from brain MRI's.
Any good rad onc can tell a lot from a good MRI. I have had 3 of them on an annual basis, since appearance of my liver mets. The initial one was the baseline and showed some little 1/2 cm spot that just sits there, and could be from a head injury as a child or who know. Last January (always start the year with one - so I can go on with my plans with peace of mind!) was also exactly the same as the first.
This year, with NO symptoms was a new story. Two mets found - maybe you have seen my posts starting around Jan 8. covering my saga.

"Sandy" has some good recent posts on skin mets that you can get some answers from.

Best of luck with this effort to get your brain monitored!

[Lisa]

False positive? I, too, have not heard of them for brain MRI. PET can be another story. So since there MAY BE some false positives, your onc doesn't do brain scans? If there ARE mets that show up, I'm sure another test like PET can confirm. Personally, I wouldn't accept that answer.

Love and light,

Lisa

[eric]

I don't believe that PET is very reliable for brain mets because of the natural glucose levels in the brain. I don't know if my explaination is completely correct but I know that I read that the MRI is currently the most reliable.

Lisa, thanks for reminding us of one very important contribution that Mary made (as did you).

Warmest regards,
Eric