Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
You might look at Ancan.org They have multiple different meetings were cancer. Patients can talk about their issues.. They have an Under 60s group and a group for veterans that can really help with getting medical support.
They really create a community of people with their weekly 2 hour online advanced prostate cancer meetings. They sent the newsletter out every week with Information about the latest things going on with prostate cancer. I also have meetings for low/intermediate cancer and active surveillance. People getting together and talking about things works pretty well.
Your biggest problem is finding people that would be participating in your Cancer site. It is very hard To get people to participate in these things. There’s other people that have tried doing online meetings have had to stop due to lack of interest. Wish you luck.
-
Like -
Helpful -
Hug
3 ReactionsIt's not an online meeting place, it's just a repository for progress, diagnosis, testing results, etc so you can not only see your own statistics easily but find others with similar statistics. It wouldn't be a replacement for Mayo or Ancan, but a way to track your data and find others who might be in similar situations and they then might have profile links to Mayo or Ancan or whatever so you know exactly who to read up on.
If there's no interest, I'm not going to spend the time, but if there is then I'm willing to do it.
That sounds awesome. Maybe if there were separate forums within the site, for each stage.
So that people waiting for a biopsy, for instance, can go to the Biopsy forum to ask what happens, step-by-step & help them understand the results.
Ditto for the MRI, Prostatectomy & Radiation stages.
-
Like -
Helpful -
Hug
2 ReactionsI've actually mocked up a bit of that. For example, using my own data for the test, here is what it would look like when someone put in their biopsy results (image attached - but it looks like white space here, however your mouse will go to a pointer when you hover just below this paragraph) and includes all the info about what that test means, links to places to dig deeper, etc.
Nailed it. That looks great.
Do you have a PI-RADS one for the MRI results?
I had to Google PI-RADS4 to know that it meant a 60% chance of cancer.
I also enjoy(?) watching the actual procedures on YouTube. I watched the biopsy video so I understood what the guy was doing down there. That helped. Maybe some YouTube links in the appropriate section - with warnings of grossness.
-
Like -
Helpful -
Hug
1 ReactionI think it's important that I again reiterate that I'm not trying to replace any support systems that are out there, just create a new take on yet another tool to throw into the toolbox. If you could use this data to see how other users did under similar circumstances perhaps it wouldn't seem so gloomy. Then again, I suppose it could still be gloomy - it's all how you process the information.
But I had to do a lot of deep research to understand all the data being thrown at me, it would be nice to just plug it in and something says "ok, this is what this means and this is how you compare to other users in a similar situation".
this is only my two cents of course, I get tested every month with a visit to my Oncologist, any questions I have, I ask him. One line above about plugging in info and saying this is what it means, makes me question who is answering what it means. With testing, I started with stage 4 metastasized to the bones right from the beginning. I had no surgeries, my biopsy was from the bone, not the prostate. I don't always connect with others on here because I have not had the treatment they have had but I do try to give support to everyone. In the past there was a post where we could add our test results, don't think it went to long, you don't see it on the first page anyway. I do wish you well on your journey and hope you find the answers you are looking for. Best to all.
-
Like -
Helpful -
Hug
2 Reactions@survivor5280
I have been coming to the Mayo site almost every day since October of 2022. I think the idea is great. I also believe that adding the functionality of the Mayo site would also be helpful. Then you can go to nccn.org and get their sign off for its use as patient support so doctors know about it and pass it on to their patients. Then go to hospital's and provide it to them as a branded service via an imaged link, financing for it all notwithstanding, though maybe the new Health and Human Services may be willing to help.
This site's topic discussions and the searchable functionality on specific topics have been invaluable to many people.
-
Like -
Helpful -
Hug
2 ReactionsDBA and programmer for the World Health Organization (Geneva), Memorial Sloan-Kettering, and Maine Medical Dept of Onc. here. Do you have a Github repo that I can look at for what you have mocked up so far? I've been down rabbit holes like this before and my gut response is "Don't do it." One-person projects eventually get abandoned. cancer.org/pcri/etc. might have a team of people, and budget - assuming that doesn't get axed - so it is typically better to let an organization build it. That said, I would use something that allows me to input all of my key info in one place. That, too, already exists, but maybe not prostate-specific.
Don't mean to be negative. That is the kind of thing I do for fun too, so go for it! But I do think there are drawbacks.
Steve
-
Like -
Helpful -
Hug
2 ReactionsYou would also have sizable legal risk for HIPAA. Just sayin.
-
Like -
Helpful -
Hug
1 Reaction