PSA: Get your brain scanned

[agness]

Hey chicas. I've spent a lot of time researching the past two years and watched my own disease progression. I feel comfortable enough with the disease to tell you to do this:

GET YOUR BRAIN SCANNED

HER2 disease (and also triple negative) have a propensity to spread to the central nervous system, more than other types of breast cancer. It will often be the first site of mets. They say if you can go three years without it coming back then the risk of it coming back is really low, like less than 5%. It reminds me of early pregnancy, if you can get to 9, 12, 14 weeks then each benchmark passed increases the likelihood of a good outcome.

It turns out that HER2 will show up in the central nervous system within the first two years -- it grows that quickly. Yet, the standard of care was developed years ago for all breast cancer types (we are individuals dammit!) and the rule is that they don't do brain scans without symptoms of nervous system disease. The problem is that:

1) their observational and assessment skills of brain mets are really poor, even amongst the most skilled

2) the brain has no nerve endings so unless you have tumor developing in a critical area you are unlikely to feel anything

Caught early though the options are much greater and the treatments less harsh than having open brain surgery (hello, yes I could have done without throwing up for weeks and being close to death in spite of seeing the doc).

The only part of the brain that has feeling is the dura and maybe your tumor will irritate it? That seems like a hell of a lot of chance that something won't go right at all.

Some patients have told me that their docs did regular brain scans of their HER2 BC and were like sh!t when it showed up. But they got monitored and it buys time. You can get cyberknife, gamma knife or proton therapy to tiny lesions -- they are treating up to 30 lesions in melanoma patients, for breast cancer they freak out after 4 and say "whole brain radiation!" But push back and protect your brain.

If you are HER2+ central nervous system disease will show up in the first couple of years but your doc won't offer it. It is not your fault that they treat everyone the same and that the standard of care that was developed by professionals is entirely inappropriate for HER2+ disease given the hard science and facts. So, here is what you are going to do to get around insurance companies willingness to pay for appropriate treatment: LIE

I'm sure others can pitch in ideas too but feel that you have absolute permission from your HER2 sisters to lie your a$$ off in order to get scans. Tell them you feel dizzy, that you have ringing in one ear, that you feel nauseous in the morning only -- I have a whole other thread about brain mets symptoms, feel free to memorize the list. If you get a clean scan then you are one step closer to true NED. Keep going for 2-3 years and then you can be pretty sure that you are good to go.

With love,

Ann

[forher]

Agreed.
My onc did a baseline brain MRI when I was dx'd in June 2013. I guess not everyone gets one. It was clear.
Then headaches prompted a second MRI 15 months later, only a month after I completed my year of herceptin. Surprise! 4 brain mets.

[annettchen]

Agreed. I asked, begged and threatened - my onc did not give me a brain scan. So I went to my family doc, who is the gold star of doctors - and he did. They have found 15 brain mets (albeit small ones, most of them) - even though my onc kept telling me "it's way to early, no way it's in the brain".

No symptoms that anyone would have identified as CNS related - heck, even I'm not sure whether they are... hopefully, time will tell if they go away once the disease is under control in the brain... And my onc is still wondering how I got to have that brain scan...

I will get WBRT - but they say they spare one of the Hippocampus, hoping to reduce side effects. I so fought for SRS - they would have done up to 10 (which is more than most do), but carved in over 10. I'm scared as hell - rad onc got all passive agressie, saying that he was the expert and to believe him that the only side effect I'll see is short term memory loss. I hope I'll live to report back in a year or two...

[Kkmom]

Annette,
Excellent and very practical information. Thank you for posting.

[forher]

Annette, I am so glad you got the brain scan. Sorry to hear of the brain mets. I have 11 lesions. I have not done WBRT. I have done SRS.
In fact one woman had 19 of her lesions all zapped with SRS just last month!

Are you asymtomatic? I am. Yup those brain mets can creep up on you.
We have a great discussion on brain mets at breastcancer.org if you want to join us there.
PM me if you want.

[agness]

Someone on the breastcancer.org site just got SRS for 17 (19?) lesions instead of WBR. They are doing SRS for more than ten. It's your head. Lots of people do WBR but you are young. I would keep interviewing docs. She had to and is getting less.

Where do you live Annette? Maybe we can help.

[jra40]

Will a PET scan pick up brain mets?

[MaineRottweilers]

No, it won't Jessica. The whole brain looks really active on a PET scan. You'll need an MRI to scan your brain.

[annettchen]

I live in Canada - Toronto.

They transferred me to Sunnybrook (Dr. Sahgal) who is said to be a capacity in the field. He said he was going to do SRS up to 10 lesions. I was at 9 with the initial MRI they did at my usual hospital. They then redid the MRI at Sunnybrook with a machine that takes "thinner slices" for lack of a better word, and found 15. So they told me that was it for SRS; SRS no more.

I pleaded. I begged. I told them I did not want WBRT. In the end they told me unmistakeably that they will NOT do SRS on me, and not treating with WBRT will mean another 2-3 months to my death. I cannot run that risk - my daughter is only 7.

I have been running around with the mets untreated for a month now, and am simply terrified. I asked whetehr they would be willing to combine SRS on the 4 that are measurable (largest one is 9mm in the cerebellum), and do chemo to get rid of the "sprinkling" of specs elsewhere. The answer was no - chemo is not effective in the brain. I brought up Lapatinib. I brought up ARRY-380; to no avail. I also brought up IT Herceptin - answer was no.

They did say they were going to do a procedure where they will spare one of the two hippocampus (I forget which one, I guess it does not matter) hoping to reduce side effects.

They also told me that with treatment, they give me another year, maybe two if I'm lucky - that's likely the reason they are genuinely unconcerned about long term side effects - because there will be no long term for me. I will certainly try to prove them wrong, but...

It is interesting, though: apparently they will NOT give me steriods. I asked, and they told me I can drive myself to / from treatment. The only side effect they expect to see is short term memory loss (and alopecia, of course, but reversible).

What I'm trying to do in addition is to get on D,L Methadone - it is said to increase the effectiveness of chemotherapy and (to a degree) radiation treatments as well. Clutching at straws... :-(

[jra40]

I am so sorry you are going through all of this Annette, I feel like coming there and kicking the sh$$ out of those doctors! Is there anywhere else you can go? Can you come to the USA? Cancer Centers of America?

[agness]

Annette -- SRS is something that is done pretty quickly over a number of days, though I understand that sometimes treating a larger number of brain mets might require grouping of sessions over a longer period of time - like a month or so.

Are you able to afford treatment outside of Canada or with a private cancer hospital. It doesn't sound like they are correct and they are giving you the party line "standard of care" but you are one person with one cancer and they need to meet you where you are.

No, I don't think they are right and I just met with two teams here in Seattle that will work on everything out of the box and treat the disease where it is and not where it is -- at Swedish Hospital and Seattle Cancer Care Alliance.

[agness]

jra40 - I had a PET scan after my ommaya port was placed and it showed that I have cancer nowhere in my body but my cerebellum. It can help with some aspects of diagnosis, and it is more sensitive in some ways than other imaging modalities but they are all very different is my understanding. Someone in my chemo group's father sold these machines for a living and she felt that in some instances, based on understanding the technologies through him, that PET was better than MRI with contrast.

That said, a whole brain MRI with gadolinium contrast is the standard to look for brain mets. I had one last week. The newer technology is PET-MRI that has been around a few years. That will let them do a metabolic sampling through the imaging to show different energy and nutrient usage in areas where there is supposed disease against where there is not. It was crazy to see how different my LM area was from the unaffected area on that view.

I just got back from talking with an MO and she agreed that if there is nodal involvement in a HER2+ patient that they have to get brain scans yearly -- so some cancer centers do get this. I told her that HER2 patients all over the country, and probably the world, are fighting with their docs to get scans and it is wrong.

[annettchen]

@agness

I may be able to affort treatment outside Canada, but within limitations. We're definitely not millionaires. And:

1. Given they seem to multiply every time we take a look, my expectation is tat even with the 15 they currently see, it is highly likely that there are more that are simply not visible yet on MRI.

2. I am running out of time. While I am currently asyptomatic (or at least, there's no symptoms that are a dead give-away for brain mets), I feel like I am running out of time. I'm scared of WBRT, but even more scared of not doing anything for another appreciable amount of time.

I will just have to bite the bullet and move forward with this. I will let you know how I fare. In the meantime, I need to line up my ducklings for next steps when WBRT fails me.

[jra40]

Praying for you Annette! Agness, thank you for that explanation. Just had PET scan done, now anxiously waiting the results.

[agness]

Bumping this up