[agness]

Ideally we are going to catch brain mets before they progress like in me and freakzilla's girkfriend but the reality, when you look at both of our cases, is that we both recurred after craniotomy. I was not on any drugs when I had to have brain surgery snd I think she wasn't either. The CSF levels with Herceptin are barely anything though and we know systemic therapy won't stop brain mets. There are lots of case studies in pubmed and some of these breast cancer forums of HER2 gals who had brain mets found during Herceptin treatment as well. I think that it just depends on how late you are disgnosed and how fast your cancer cell line moves.

Anyway, back to what we saw with me and our other craniotomy patient this summer, if you have a HER2 tumor I think it is safe to say that surgery will create disease spread. We both had evidence of recurrence in the tumor bed within 6 weeks post op. The standard time frame for SRS brain rads here in the States is 4-6 weeks after surgery. The thing is that you feel like shit after having had your head cracked open so even 4 weeks feels aggressive to the patient. It can help but I don't think its enough as HER2 is responding to nornal growth hormones in the body and going nuts. Plus, MRI is completely inaccurate unless there are more than 109 cells massed -- if disease is spreading like a film on your brain they can't see it until it starts to mass up.

Here's my rough list for patients with HER2 brain mets needing surgery:

1) try to zap the tumor before surgery if you aren't on death's door. It is a developing practice and it might not be enough but at least you are trying to thwart inevitable disease spread. After consulting with the head of radiosurgery at Swedish Hospital this week I think this can be done, she mentioned that neurosurgery and oncology wouldn't really start their or consult with them about this. I know that this can be the truth in different discipline areas -- such as fibroid embolisation done by an interventional radiologist won't bd offered by an OB/gyn even if it is better for the patient. My tumor board included all oncology disciplines however so you might need to consult outside on your own if you can. They missed me and I was given 24 hours to live, not much wiggle room there.

2) get on a keto diet ASAP to lower CSF glucose and start challenging cell lines metabolically. We can't affect our levels of growth hormone yet but our cancer cells are obviously seeking out the shelter snd high sugar levels found in the CNS and we can alter that environment to slow them down.

3) get SRS after surgery should include a much larger margin than usual. In the cerebellum this wasn't too hard as it isn't involved with thinking and feelings and stuff. In the cerebrum this might be harder. I do know from my consults this week that there are radiation treatment options that can just treat the surface of the brain, I'll ask to see if it is the Tomotherapy machine or a different one. Each facility has different technology available and they don't all have the same capabilities. You might be offered what is available and while good it might not be best for your situation. The one good thing is that it looks like my tumor did respond to SRS as there was no noted recurrent there, so rads can help. Partial brain irradiation like I'm getting might be worth it if you stop disease and don't need WBR.

4) the standard currently is to scan three months later, with HER2 this is too long. I had post craniotomy scans at 6 weeks for SRS planning, then 6-7 weeks post rads, then 30 days, then 30 days -- and the disease kept spreading. It was only after that last scan that they diagnosed me and were willing to do IT Herceptin.

5) IT Herceptin helped me, but the problem is that there was disease massing in the folds and crevices of the cerebellum, hiding from my body and treatments. Getting started with IT Herceptin sooner can stop this from happening -- heck it might even make SRS and WBR a thing of the past for HER2 gals. I asked for IT Herceptin in my post-op visit a month later and was declined, "we might hurt you. There's no evidence of diseas. We don't know what we are treating." and so forth. Again, they can't see it on the MRI, there is a huge rate of recurrence with HER2 after a craniotomy, getting an Ommaya port placed was super uncomfortable but it was better than being treated with watchful waiting by oncology professionals who don't seem to be able to read their own films and it was way better than having my brain nuked with WBR after they started shitting when they realized it was there. The fact is they couldn't see why my facial nerves hurt and were causing intermittent numbness, they also can't see anything that would make them resolve. I tell them though that it isn't my problem that their imaging is imperfect and the reality is that those pains went away after we started IT Herceptin and haven't come back.