Considering Creating A Companion Cancer Site

After going through this journey there are some things that I found very helpful, especially here, but also some things that were lacking that could be helpful.

Since I’m in the business, I thought I would create a website for everyone going through a cancer journey, be it prostate or otherwise, that augments the wonderful support provided here and in other places.

At first I wanted to spin up a site to talk about my success and the things I did to take any control I could over it, a positive message for those desperately seeking a positive outcome since those that succeed generally have little reason to come back to here very often and spread some of that positivity around that “no, it doesn’t have to always be bad, you can get through this OK and I’m proof” kind of messages.

I mean, let’s face it, we all went into this figuring it was guaranteed that we would be incontinent and have a dead fish in our pants but reading the forum indicates that is far from the truth but to widely varying degrees based on the severity of the cancer, the procedure and more.

Then I got to thinking about how it might be nice for others to post to a site like that and share their positive and negative experiences, with actual data points that people can use to find others like themselves.

I know, for me, there were a lot fewer guys my age going through this, which meant I was always trying to gauge my success relative to the difference in age between me and someone similar to me - since age often makes a difference.

So I’m considering a much more comprehensive site, and what I’m playing with now is this:

• A community of people on this journey, there will be a forum to chat but it’s not meant to replace well established support systems like this one but more to supplement and talk about the things that might be more tied to the stories or focused on data points - as much social as informational but with acknowledging that other sites are much more comprehensive for certain questions, like this one

• Ability to have a profile where you can enter your data in a timeline - I.e., that first PSA test, the first biopsy and the Gleason Score, to the treatment(s) and outcome(s). I find on here we often have to repeat ourselves about when we did something and what the results were and how old we were at the time and what our outcome was then versus now (i.e., ED or incontinence)

• With those data points be able to show the user how many other folks might be in a similar category so they get an idea of if their journey is similar. For instance, a graph might say “based on your age, there are 25% of our users that had a similar diagnosis at your age” or “based on your biopsy values, age and PSA, 37% of our users chose this treatment option”

• Ability to find users based on their outcomes, with links back to the Mayo profile here or other places to maybe try to ask them questions. For instance, maybe you did a prostatectomy and are now trying to decide if salvage radiation is effective or some other new treatment option - you could search the database and see that survivor5280 on Mayo had a similar story to share, and a link takes you to their Mayo profile so you could read their postings or even message them

I’ve been doing a mock-up proof of concept but am at the point that I either commit to all the work it takes to get the to the finish line or not. So I thought I’d ask here if this is even something that you would find useful or not and something I shouldn’t spend my time doing.

This is me, it’s how I do things. When I quit smoking over a decade ago I set up an entire community site to help people quit and stay quit, and I still maintain it and interact with people there. I get passionate about these kinds of things and want to help because I know how hard these journeys are and how the positive experiences can often make a huge difference in how you feel.