just a fear-based question

[Joy]

Hi everyone, I've been crazy, crazy busy lately with work and teaching and kids. I'm so happy to see some good results for people have been shared. Congrats to all of you with good news and more reason to celebrate.

And thank you, Gina, for your very honest and understanding response to my post about single-motherhood and stage IV-ness. I'm with ya sister!

My dumb question is this. Is it really possible to have this diagnosis (her-2, stage IV, blah, blah, blah) and never end up with brain mets? I've developed such fear about this that I'm afraid I'm not helping myself in any way lately. i do get the regular MRI's and all, but the fact is i don't want any more involvement-I know you are all surprised:).

Are there long term, stage IV bc survivors who have not developed brain mets?

I know I've asked this before, but it has been awhile and I need a boost. I want to let go of this fear. i also want to share that the women with brain mets are so very inspirational and definitely the most couragous people i have ever known.

Help.

[jojo]

Hi Joy,

I am sorry that you are having a challenging facing your fears. I hope they diminish over time. Realistically, our fears would NEVER be totally gone, once we get diagnosed with cancer, unfortunately. However, we could learn how to control our fears better over time. We would always have SOME bad days, no matter what -- that's life! -- but we would have MORE good days than bad, right??!!?? Just hang in there.

Oh, I almost forgot your question!... You asked about long-term BC survivors. Isn't our Tricia K one of them? If memory serves, she has been around for 20 years since original diagnosis. And isn't she her2+ as well?? So, the long-term survivors DO exist!!

I pray that you will feel better soon.

[Joe]

One third of metastatic breast cancer patients will eventually get brain mets, so that means that two-thirds will not.


Regards
Joe

[StephN]

Dear Joy -
Well, you have been BUSY - that is the way LIFE is supposed to be. The less time we have to stew about dark possiblities, the better of we are. That does not mean that those nagging thoughts won't jump out at us from time to time, and we have to face them down.

I know of a couple of long term HER2 positive, stage IV ladies who have never developed brain mets. One who is about 10 years out and has the lymph nodes to deal with from time to time as well as a tumor in her rib that is now gone.
The other has also had more serious bone mets and has to fight them from time to time. We all share the same med onc, so all get screening brain MRIs.

As Joe said, the odds are with you. That was the attitude I held until the brain mets showed on my MRI. Now I try to put them behind me.

[Lolly]

Hi Joy, I'm not a super long termer, but am heading into my 7th year since primary dx, and 5th year as a Stage IV'er. No brain mets so far. I understand your fear, and the way I've dealt with it is to read all the info available here regarding brain mets treatments, and draw inspiration from our girls who've shown us it can be survived. So, whenever the "Fear Factor" strikes I have ammunition. As the saying goes, Knowledge Is Power.

<3,
Lolly