Question

[Patty F]

A few days ago Joe had stated that 40% of her+ people end up with brain mets.
I was shocked by that number. I would have never thought it would be that high.
My question is I know that I have never had a MRI of my brain. Should I check into having one done?
I have also never had a bone scan. Is this something I need also?
Thanks for all your help.

[dlaxague]

I'm pretty sure that Joe is talking only of those who develop mets. I can't find his post to check but I'm pretty sure that's how I read it. 40% of those who do develop mets will eventually have brain involvement. So if your risk of recurrence after primary treatment is, say, 20% - then your risk of brain mets after primary treatment would be 40% of 20% which is 8%.

I think that he also quoted a figure of 10% for the percentage of brain mets that presents FIRST as brain mets (without evidence of other metastatic involvement). I've seen lower numbers than that but maybe this is new information based on those who got Herceptin adjuvantly. But even using the 10%-of-brain-mets-is-brain-1st figure, to go back to the above example - then if your risk of brain mets computed to 8% after primary treatment, your risk of brain mets as 1st site would be 0.8%, or less than 1%. I have to go rest my brain now. Please correct me if this is not right.

What this says to me is that if you've been diagnosed with mets, you probably want to keep an eye on the brain. If you are post adjuvant treatment and especially if you're not at particularly high risk for a recurrence, it's an individual preference call as to whether you think you need brain surveilance.

The thing about brain involvement that is fascinating to me is that unlike body mets, it seems to make a big difference to find the brain mets early, small, and/or few rather than late, large, and/or many - the treatment options and the response seem to be much better. (This is not necessarily true with organ mets. Look at all the stories here on this list of extensive liver or lung involvement that responded amazingly well to systemic treatment, and stayed gone for long period of time.) The difference might be (pure speculation on my part here) because brain mets are typically treated locally rather than systemically (because it's hard to get to them systemically because most drugs don't cross the bbb).

So - the next logical question that rings in my ears is "what if we found organ mets early/small and/or few and treated them the same way - locally with some kind of focused radiation, or with surgery?" Could we keep body mets at bay longer, delaying the need for chemo, and thus lengthening life and also impacting quality of life? I don't think that we have these answers, and I'm not sure if we're even asking the questions (doing trials). And we especially don't have the answers for HER2+ and/or ERPR positive cancer - because we tend to rely on Herceptin (and now Tykerb) and hormonal treatment as the first guns, because they're milder than chemo, so there's less impetus to look for other treatment. But maybe to start with focused radiation or surgery would be the mildest of all, and maybe that would buy the most time.

Oops. Off topic and rambling.

Joe, can you clarify your numbers for us? It's not 40% of every HER2neu+ breast cancer that develops brain mets, right? It's 40% of every HER2neu+ metastatic breast cancer that does that.

Debbie Laxague

[Sherryg683]

In my opinion and from what I"ve been reading about for 3 years now, everyone should have a brain MRI done on a yearly basis. The chemos target the body but does not cross the blood brain barrier, and while most body mets can be held off or kept at bay, our brain is unprotected. At least with the most common chemos that we receive. A few they believe do cross the barrier, like Tykerb and possibly Xeloda. I believe what I read on the link Joe provided it said from 25% up to 40% Her 2 women will develope brain mets, that's a 15% spread there. I didn't pick up where it specified "women with mets" but maybe it did and I overlooked it. I have always believed from the beginning that I wanted to keep my brain checked and my oncologist has been very good about the MRI"s...It's been 8 months since my last one and I'm having him order another..I would rather ere on the cautious side and it does matter if they are caught early and small in number as to treatment options. One of the ladies here locally was diagnosed with her2 positive cancer many years ago, she was doing fine until she had a seizure and they found it in her brain..too late..she had never had any scans done, I think this is a practice that should be changed. HER2 is at higher risk than other breast cancers, so we should be kept a closer eye on....sherryg683

[Sherryg683]

To clarify again..what I read said from 25% UP TO 40%, I don't take that as saying that it's a clear cut 40% that get brain mets. My Oncologist told me he though it was more around the 33% range. I guess it's on what study is being looked at. But even so, 25% is high enough to warrent being checked at least yearly...sherryg683

[Jackie07]

I had my MRI done in spring after I received a notice from Presbyterian Hospital in Dallas that it was time for the follow-up of my Gamma-knife Radiosurgery in 2001. My Oncologist ordered it after I showed him the letter. But I think he started to think that I am hypochondriac because then I also requested for a PET scan...

I would rather people think I am 'crazy' then being delayed again for any kind of treatment. My brain tumor diagnosis in 1990 was delayed for more than a year after I had started experiencing huge headaches. Two different family doctors were sure that it was 'in my head'. Well, it turned out there was a huge tumor 'in my head'.

And my breast cancer recurrence was also delayed for 4 years because it was thought to be 'scar tissue'. Doctors are human. Technicians are human. Radiologist who reads the film are human. They make human errors. We are human, too. But we will be the one that have to face the consequences.

So I agree whole heartedly with Sherry that we would rather err on the cautious side.

[dlaxague]

"Women who have HER2 metastatic disease have a risk of brain metastases ranging from 25-40%."

And there's a two-page interview with Dr. Andrew Seidman of MSK, about screening for brain mets. Very interesting reading.

http://brainmetsbc.org/index.php?q=node/38

One more quote (they are talking about his statement that there is no need for brain surveilance after primary diagnosis, and Musa Mayer's interview question is first, followed by his response):

"MM: Would that be true for even for locally advanced (with positive lymph nodes) HER2-positive disease?

AS: Well, that’s a very slippery slope. That’s a scenario that is driven more by opinion than by any data, I’ll be the first to admit. I think in the scenario of the patient with locally advanced HER2-positive breast cancer, it is not unreasonable to screen for brain metastases, since we know that patients with HER2-positive breast cancer have a higher chance of having brain metastases. Even in the absence of finding other sites of metastases, such as bone, lung, liver or others, it’s not unreasonable in someone who has locally advanced disease and is HER2-positive to do screening, an imaging study of the brain.