Caring Bridge Opinions

[MustardSeed]

Hi there.  Just as introduction, my dad was just diagnosed with Squamous NSCLC Stage 4.  He is inoperable due to a mass growing into his mediastinum.

What is everyone's opinion about Careing Bridge?  Do you use it? are there other sites that are similar?  Pros/Cons?  If  you use it to you put the prognosis? (I'm not exactly sure what my dad's is, yesterday was his first Oncology appointment and his doctor said the median for patients with his cancer is 10-12 months, which is essentially just an average.  Does it change as you go to more appointments and they see how the Chemo working?)

I haven't broached the topic with my dad yet but I'm curious as to know what other's experiences have been.

-Thank you

 

***Edited to change it to Caring Bridge not "Care."

[Steff]

Hi there,

I am not familiar with Caring Bridge, although it does sound neat.  I use my mom's clinic's online medical charting system to get accurate and up-to-date information regarding her medical appointments, test results, upcoming appointments, etc - I just use her log in information to view it.  It does not have the option that Caring Bridge does in that she can't post her personal updates.  I think that is a neat option.  Perhaps the facility that your mom is going to has an online medical chart system with that option???  

But Caring Bridge is not why I am responding to your post....I want to respond to the prognosis and time limit given to your dad.  Yes they are only averages and yes everyone is different.  Your dad is only 1 person and NO ONE can tell you how long he will live.  And if 1 person can survive well past their "time limit", why can't your dad too? 

I got really caught up in the statistics when my mom was first diagnosed.  And the reality of the statistics is that they aren't good. But the other reality of the statistics is that they are based on old data.  There has been so many changes in lung cancer treatment and the statistics do not reflect that yet.  The reality is that people are living longer with lung cancer due to groundbreaking treatment options.  I hope that the fact that your dad was given a time limited prognosis does not discourage him from finding out what his treatment options are and pursuing what he feels is best for himself.  

[Tom Galli]

MustardSeed,

Welcome here.

I am so very sorry to learn about your father's diagnosis.  You've asked a number of questions and I'll attempt to answer.

You mentioned Care Bridge and might you mean CaringBridge?  If so, it is a website that allows you to build a social network around your father to allow those close to him learn about his treatment.  I don't have any actual experience with it but suggest our Lung Cancer Support Community performs the same functions and in addition has people who are subject matter experts in surviving lung cancer.  You can build your community be telling family members to sign on as guests and review posts that you make that update your father's treatment progress and, most importantly, include information from other survivors about new treatment and side effect experiences.  I have no actual experience with CaringBridge.

Let's talk about prognosis.  First, read this about lung cancer survivor statistics ("median for patients with his cancer is 10-12 months").  There is a link in the last paragraph that has an essay by Dr. Stephen Jay Gould.  Listen to it.  Here are some points about survivor statistics that are pertinent to your father. (i) the data used to predict median survivor time is dated; (ii) immunotherapy is a very new form of very effective treatment for Squamous cell, and statistics do not reflect the impact on survival from this new treatment; and (iii) your father is an individual, and a mean or median survival prediction cannot describe his actual outcome.  I had a survival prediction of less than 5% probability of living 1 year.  I also had a doctor tell me I had about 6 months of life remaining.  In February of this year, I celebrated 14 years of life after diagnosis.  I am the variation; so is your father.  If I can live, so can he.

Again, welcome here and this is the place for questions about lung cancer.  While we are not doctors, we are indeed subject matter experts by hard earned survival experience.

Stay the course.

Tom

[LexieCat]

Hi, and welcome!  I second what everyone had to say about statistics.  They don't tell you much about what will happen with any specific individual and, as pointed out, they are based on survival rates from five or more years ago, and the survival rates are improving all the time.

As far as CaringBridge goes, my hospital offered a very similar site.  I liked it a lot because I could share exactly what I wanted to share with friends/family.  It was private from anyone not invited.  It saved me from having to repeat the same info over and over to everyone who was concerned about how I was doing.  It's more private than facebook. 

I would NOT have invited anyone to read my posts here.  For me, this is my "safe space" to talk to others who really get it.  I'd prefer not to share that info even with close loved ones.  

But everyone is different.  I believe my hospital discontinued the service they were using, but if I ever have to battle cancer again, I'd keep something like CaringBridge on the radar as a way to keep people informed of what I do want to share.

[BridgetO]

Hi Mustard Seed,

Welcome here! i'm sorry to hear about your father's diagnosis. I agree with what Susan, Tom and LexieCat say about statistics.  My father-in-law was diagnosed with an especially difficult form of lymphoma 20 years ago and was "given" 6  months to live. He got a new form of treatment and he's now pushing 90.  

I, like Lexie, haven't invited anyone to read my posts here, although some people know I'm on here and could read them if I wanted. For me, also, it's a "safe" space.

 I've never used Caring Bridge or similar sites. I know a number of people who've used Lotsa Helping Hands and liked it a lot. In addition to sharing information with a community of people that you designate, It lets people (especially local ones) sign up to be available for pracitcal help. The way it works (as I understand it)  is that the person needing assistance puts in the specific thing they need, for example dinner on Thursday, someone to sit with them on the day they come home fom surgery, or a ride to a specific appointment. This goes out to the whole network and anyone who wants to volunteer for it signs up. This can be easier than asking one specific person fo something. It's also really helpful to people who want to do something fo you but don't know what to do. So it serves a function other than information sharing and emotional support. 

Best wishes and blessings to your father and to you,too. 

Bridget O

[MustardSeed]

Thank you so much for your prompt responses and for all the information on this site, I was able to learn a lot and ask more informed questions with his doctors.

Yes, you are right it was a typo and I meant Caring Bridge. (I fixed it now 😊)  Obviously, it is totally up to my dad if we use Caring Bridge but I think it might be nice to have a place where family and friends can check in on his treatment progress.

Also, they are sending my dad's biopsy for testing to see if immunotherapy is an option for him.