Research needs data (Recap of Lost Posts, Topic Created by NoTimeForCancer on Jan 14, 2019)

cmb

This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.

NoTimeForCancer

Jan 14, 2019 - 4:00 pm

Good afternoon all.  I am not sure everyone is aware, but I am a patient advocate on the uterine task force with NCI.  I am honored to serve, and represent all of the women out there who have/had this disease, and every now and then all the advocates get some really cool presentations.  

Today we heard about "All of Us" research program.  This is gathering data about people, from all kinds of backgrounds, to see if they can figure more out about cancer.  They de-identify data, and have built in lots of security, and no one will ever know it is you, but it is about your family and friends as well!

Why did we get cancer and your family member didn't?  In any event, I wanted to share the website and link if anyone wanted to sign up or pass along to their family and friends.  

https://www.joinallofus.org

 

cmb

Jan 14, 2019 - 4:50 pm

Interesting Initiative

Thanks for sharing the link for this interesting initiative. I hope that enough people join the project to make the data analysis meaningful.

 

derMaus

Jan 14, 2019 - 5:14 pm

Thanks, NoTime. I briefly

Thanks, NoTime. I briefly checked this out and am going to read in more detail later, but fully intend to join. B

 

Forherself

Jan 14, 2019 - 5:25 pm

Me too

I thought it was an intersting observation that a lot of women on this board have horses.  I have horses too, and have had for 50 years.  Association and causation are different, but there are a lot of horse women on this board.   I will join this program too.  I also notice a lot of women on this board mention having endometriosis.   

 

Ribbons

Jan 14, 2019 - 5:49 pm

I have horses too

I have had horses my whole life, 66 years! Also my parents and a couple of Grandparents all were horse people.

 

Forherself

Jan 14, 2019 - 5:26 pm

And a lot

of women on this board have beautiful smiles...

 

zsazsa1

Jan 14, 2019 - 10:28 pm

I've wondered if any connection with history of fibroids

I had to have surgery for very large uterine fibroids at around 28 yrs old - much earlier than my mother's hysterectomy at 48, prompted by a large, benign ovarian tumor, but they took the uterus too because of large fibroids.  She was diagnosed with pancreatic cancer at age 72.    I developed UPSC/clear cell at 56.  I've wondered if the early fibroids were a harbinger of early uterine cancer.

 

zsazsa1

Jan 14, 2019 - 10:53 pm

No site near me, no way to report current illness

I just went as far as I could online with the All of Us website.  They asked a lot of questions about one's general state of health - which of course are influenced by the fact that I'm currently on chemo, but there's no way to note that.  No specific medical history was asked.  I'm curious to see how they intend to get the information that they need - whether there will be a detailed medical history, questions about the address (es) at which one grew up (I grew up only a couple of blocks from a major highway in NYC, know that there was a lot of car exhaust pollution nearby), questions about travel to areas of the world with severe pollution, etc.

 

NoTimeForCancer

Jan 15, 2019 - 7:31 am

zsazsa, one of the advocates

zsazsa, one of the advocates asked a great question about being "nomadic".  I have moved a few times, doing an eleven year stint in NYC, and I thought it was a relevant question as well.  As noted, this is for everyone, even our family as who knows what the future holds.  Of course, I pray I am the only one in my family to get this disease, but one never knows.  I hope the research can help everyone.

Thank you all who want to participate.