Finding reliable cancer information and trusted support online

What a negative article about using the internet to find out more about cancer and treatments!  I was hoping for something a lot more balanced.

Googling isn't for everyone.  But if you stick to recognised sources (there's a lot more than what is listed above) it can be really educational, empowering, and interesting.   For example, best avoid googling about prognosis because these stats are 5+ years out-of-date and generic.   You get nothing informative or positive from these stats.  

I think it's important to have thresholds for when to step away from the internet and say "that's enough" for now.  For me, that was when I felt "fed-up" or demoralised by it all.   Or if I read something that said cancer was hereditory then I would stop, and mark that source as dodgy and take-a-break.  

If you google treatments and your cancer it can reveal very recent white papers on current trends and research from the cutting edge.  I know I am not the only person on here to use these.  It takes ages to read them because there's lots of medical jargon to look-up but I have found them informative and incredibly useful for side effects and treatment trends.  Especially when you get the rare side effects like me.  Pubmed is a good one. All it's articules are from reputable sources and everything is evidenced, from the sample size, the statistics (if you can understand them), and the patient profiles.  

Some medical researchers and groups are also on twitter and they post headlines from conferences.  I follow @Uromigos, who are three urology oncologists who have a podcast debating topical issues.  Some researchers/medics/consultants do webinars/videos and these are broadcast by reputable UK cancer support groups .   I went to one on radiography and there was a Q&A afterwards.  Another on treatment options for my cancer hosted by a consultant from Barts.  One that sticks in my mind was the one on kidney cancer UK answering "what's the best immunology treatment to go on?!". 

If it's for you, there's lots of ways to get information when you feel like it without it sending you loopy!   My suggestion is (a) recognise your personality type and then (b) decide if you think reading is for you.  If so (c) put guardrails in place to protect yourself like a time limit but (d) remember that at the end of the day, only your team are really switched on to managing your situation.  

Finally, there's this community which offers peer support and sharing experiences which is positive too.  

Hi Mmum 

Thank you for your comment. I agree it is a negative viewpoint, but one which reflects the experience of members across the forums.

When researching for the blog I was overwhelmed by how many people were having a negative experience when searching online for information. We hope to help people have a more positive experience. 

Thank you for taking the time to add your own experience, which is a great addition to those shared in the blog.

Warm wishes

Steph

I don’t understand all the abbreviations people use and ditto when I read research papers

Hello SMP 

I'm Steph from the Community team, thank you for your comment here.

I'm sorry that you don't understand all the abbreviations people use. If that's on the forums here, I am sure no-one will mind if you ask them to explain what they mean. 

You can find trusted cancer information here on the Macmillan website, which might help explain some of the common abbreviations used around your cancer care and treatment. If you don't find the information you are looking for, you would be welcome to ask our nurses a question. You can ask a question here or call our Support Line teams, available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

Please do let us know if you would like any further support with this, you can contact us by email at community@macmillan.org.uk