[marckemil]

I'm a radiation oncologist. I strongly advise you ask your questions to an oncologist. The amount of information available is simply crazy and "normal people" can rarely appreciate the subtleties of a disease and its treatments. Unfortunately, 10 years of training is impossible to squeeze in a few hours of reading.

That being said, Grade IV gliomas are usually being treated with a combination of surgery, radiation and chemotherapy (usually temozolomide). Surgery is either a biopsy or a resection. Glioblastomas have multiple "roots" making them very difficult to remove. Even after surgery they almost always recur. Sometimes they're located in regions of the brain where the risk of surgery outweighs any benefit (for example, the patient would be left unable to talk after the surgery); then we do a biopsy and go on to the next "step", which is radiation.

Radiation therapy is given daily over a few weeks. Based on a few factors such as age and general condition, the radiation oncologist will determine the dose and number of treatments (fractions) he recommends. Between 15 and 30 treatments is usual in patients that are in reasonable shape.

Again, based on general condition and a few other factors, someone (a neurosurgeon, medical or radiation oncologist) will prescribe temozolomide. It's usually given during or after radiation. That medication really improved outcomes and is now considered standard of care in people that can tolerate it.

Despite our best efforts, the disease usually comes back. At that point options can be limited. Some people will try clinical trials, but before you start travelling with a loved one across the country, keep in mind a few important things: this is a deadly disease so quality of life becomes very important. Spending hours in hospitals trying out toxic treatments has an important impact on that. Moreover, I haven't seen any breathtaking preliminary clinical trial results on GBM lately (that includes virus, weed and the likes). Participating in trials should be seen as a way to contribute to cancer research; I wouldn't go into it expecting to find a cure.

If you really want to have access to the information physicians use, you should check out the NCCN guidelines on Central Nervous System Cancers. It's NOT written for the general population and I would not advise you to even look it up. It can be really confusing and bring in more stress than it's worth. As I said on top here, better talk to a physician.

I hope this helps.

[brudgers]

My beloved has been a clinical social worker for more than two decades. She's doing her third stint with oncology. In between she's done Alzhiemer's, geriatrics, and a ton of hospice work. I can't second enough the suggestion that quality of life is a primary consideration.

Were it me or a loved one, my first criterion for a physician would be their view on quality of life and palliative care.

[sentenza]

Here's some info that might be interesting to you, altbeit it is not helpful for the original poster: I used to work at GSI (center for heavy ion research in Germany) and the heavy ion irradiation method developed there can alleviate some of the problems with treatment (primarily the roots problem).

The therapy consists of irradiation with heavy ions, which have two important helpful characteristics: a) they cause more severe cell damage, making therapy of some radiation-resistant tumors possible, and b) their damage is extremely localized in a so-called Bragg-peak, which means you don't have to destroy every cell on the path to the tumor.

Since it is a beam of charged particles, magnets are used to rasterize the tumor, irradiating only the exact tumor location and very little healthy tissue.

Unfortunately, a massive fuckup in the German health system has led to a situation in which there is currently one center that treats patients (HIT in Heidelberg), one completed center that can't go into operation (!) and there will be no new centers built for a few years to come.

The center in Heidelberg is understandably overrun with patients and only young, healty patients with inoperable brain tumors are treated (the precise localization of the cell damage allows for irradiation of tumors close to the eye or the brain-stem).

http://www.ro-journal.com/content/9/1/88

[jeo1234]

Do you know what sources oncologists used to keep themselves up to date?

[marckemil]

There are many. Personally I will read the NCCN recommendations and discussion section. They're updated frequently. UpToDate is another website I like. I subscribe to Medscape oncology for cancer related news. Meetings are also a good way to stay up to date with what's new. Read by QxMD is an app I use to keep up with what's being published in my field.

[niels_olson]

Path resident checking in. Would you consider doing a genetic panel similar to the recent work from the Cancer Genome Atlas project's recently reported classification for lower-grade gliomas?

http://www.nejm.org/doi/full/10.1056/NEJMoa1402121

[shanacarp]

Um, slightly OT: If you want to participate in research around the Cancer Genome Atlas for other cancers, how do you do that?

[niels_olson]

A) find out who at your institution is already involved,

B) contact the IRB or clinical investigations department, they probably need to verify their institutional existence and will then have a list of whichever investigators they have vouched for.

C) ask on reddit: /r/bioinformatics

D) they have contact info on the website.

[shanacarp]

You're a mensch for being here. I just need to say that. This is a super helpful, good comment.