Ask HN: How to Find the Best Info on Cancer Treatments?

#1

Post by ekianjo » Sun, Aug 30, 2015, 3:01 PM UTC

Hi Everyone, one of my close relatives has been diagnosed with Stage IV Glioblastoma (GBM), and while there's literally tons of information online about treatments and procedures, how would one go about digesting it all ? For example there's 75 publications from the recent ASCO 2015 congress about GBM treatments, is there any tool out there to compare what works vs what does not work as well? Another question would be, how to find the best specialists in my Area for this kind of cancer?

Any help/advice is very much appreciated!

Re: Ask HN: How to Find the Best Info on Cancer Treatments?

#2

Post by 1qaz2wsx3edc » Sun, Aug 30, 2015, 3:34 PM UTC

I was diagnosed with a low grade diffused tumour about a year and a half ago after having a seizure at 26. I understand the difficulty of having to grok through all that terse information. That said, I found http://astrocytomaoptions.com/ by Stephen Western to be a helpful portal of information.

All the best to you and your family.

Re: Ask HN: How to Find the Best Info on Cancer Treatments?

#3

Post by ska » Sun, Aug 30, 2015, 3:38 PM UTC

Conference papers aren't much use here, really.

I'm no expert, but in your shoes I would be looking for the most experienced panel I can find, hopefully with neuro specialists preferably (e.g. a neuro-radiologist, neuro-oncologist, etc. as specialists). If there is a teaching hospital with a good reputation in your area they may be more current on techniques than a purely clinical one (but this isn't hard and fast). Don't ever be afraid to ask questions, and keep at it until get a clear explanation of the panels reasoning behind their suggestions.

Best luck to you and your relative.

Re: Ask HN: How to Find the Best Info on Cancer Treatments?

#4

Post by losvedir » Sun, Aug 30, 2015, 3:45 PM UTC

Aw, that's terrible. Sorry about your relative.

> Another question would be, how to find the best specialists in my Area for this kind of cancer?

I used to work in finance helping analysts evaluate biotech stocks, and one of my responsibilities was identifying thought leaders in the field and setting up consultations with them.

On metafilter someone asked a question "Let's say you wanted to find the very best ovarian cancer specialist in the US. How would you go about doing that?", and I answered[0] with the kinds of things I would do for my job. It might be helpful for you.

[0] http://ask.metafilter.com/267385/How-to-find-the-best-doctor...

Re: Ask HN: How to Find the Best Info on Cancer Treatments?

#5

Post by c_prompt » Sun, Aug 30, 2015, 3:46 PM UTC

This isn't a direct answer to your questions but I hate this disease with a passion and any discussions about mainstream research avenues that ignore other less well-accepted forms of treatment get my emotions in a whirl. (My sister died of brain cancer.)

Please consider researching the benefits of marijuana in your efforts to help your relative. It provides tremendous relief for pain and nausea and cannabinoid treatment causes cancer cells to commit suicide. [1]

My thoughts are with you and your family.

[1] http://valme.io/c/diseases/cancer/52qqs/enough-of-this-nonse...

Re: Ask HN: How to Find the Best Info on Cancer Treatments?

#6

Post by maj0rhn » Sun, Aug 30, 2015, 3:54 PM UTC

I'd submit it's really not possible to digest the ton of information you've found with any confidence that you can pick the "right" path for your relative. After all, such large masses of information is why doctors specialize -- even they can't digest such quantities unless they spend large parts of their professional life living the information.

A better bet is to find an expert who has digested all that information, and use him or her as your guide. If you are not confident in the knowledge base carried in the brain of your relative's current doctor, you can find out the people in the world who know the most about GBM by looking here:

http://expertscape.com/ex/glioblastoma

Disclosure: my cousin developed Expertscape.

Re: Ask HN: How to Find the Best Info on Cancer Treatments?

#7

Post by rokhayakebe » Sun, Aug 30, 2015, 4:03 PM UTC

On finding specialists. Call all the oncologists you can in your area and ask them if they are specialist for this type of cancer, if they aren't ask them they know a specialist.

Re: Ask HN: How to Find the Best Info on Cancer Treatments?

#8

Post by zer00eyz » Sun, Aug 30, 2015, 4:03 PM UTC

https://www.google.com/search?rls=en&q=Glioblastoma+support+...

Start right there:

You need to find people who have gone through what your going through. Im sure some of them have already parsed this information, and would be better suited than any of us in helping to sort through it.

As for finding specialists, your current doctor, and the people he recommends are your best bets. The medical community is a strange one, and "best" is a hard term to qualify. The best doctor might have the lowest rate of curing paitents because they only take on the worst cases. The "best" doctor might be the one who understands the outcome and makes sure that your treatment matches your lifestyle and acceptance of outcome (time here vs quality of life).

Find those support groups, really go find them and USE THEM. They are going to help you and yours in a time that is going to be really rough to get through. If you knew me personally the fact that I was telling you "go find a support group" would probably shock you, as Im not the type of person you would expect to recommend or attend such a thing. They will help you, it will be hard, its going to suck, but you should do it!

Re: Ask HN: How to Find the Best Info on Cancer Treatments?

#9

Post by Thriptic » Sun, Aug 30, 2015, 4:07 PM UTC

Disclaimer: I'm a bioengineer, not a physician, so please seek further info from a MD.

> and while there's literally tons of information online about treatments and procedures, how would one go about digesting it all ?

This is actually a problem for practicing physicians as well, as knowledge transfers slowly across the industry. Many professional societies (American Heart Association for example) try to address this problem by releasing clinical practice guidelines which are suggested best practices for managing different diseases. You should check if the American Cancer Society or another equivalent group issues such guidelines.

I would also strongly recommend consulting an oncologist or a neurologist, who will be able to point you towards the best treatment centers in the area and the best treatment options.

Re: Ask HN: How to Find the Best Info on Cancer Treatments?

#10

Post by DanBC » Sun, Aug 30, 2015, 4:09 PM UTC

For treatment today you probably want to look at either Cochrane Collaborations - meta reviews of many published papers. You can also check out the NICE guidance. The evidence they use might be useful to see if stuff works or not.

https://www.nice.org.uk/

http://www.cochranelibrary.com/