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Hi Leva, that’s an interesting question. I guess I’m curious as to why you think separate forums would be better. I didn’t check back on your posts to see which you have, but is it because you are anxious because your BC is not invasive and you think it may become invasive. Perhaps its’ the other way around. It would be interesting to know how the other members of the forum feel about your suggestion though. Hopefully, some of them will respond. I look forward to getting the opinions of some others.
Take care
LorraineMalcolm had his 1st symptom end of January 2011. Investigations Feb, Mar. Diagnosis of muscle invasive April. Neo bladder May. Chemo started in June.
The direct to muscle invasive is a different journey than the non invasive BCG journey. it was difficult finding information that related directly to muscle invasive bladder cancer and neo bladders. When newly diagnosed, there is not much energy to sift through posts looking for relevant facts and information for help.
Hi Ieva
The current system would not allow for a separate forum for NMIBC and MIBC.
I could split the categories under “discussions with patients and caregivers”, one category for NMIBC and 1 for MIBC.
For this to be effective, I would have to go through the current postings (history) on the forum, and split all the discussions to the proper category.
You bring up a very good point here Ieva.
Newly Diagnosed I would recommend we leave as it is currently as most new people do not know their stage and grade, and are just at the beginning of their diagnosis. Many have not had a Turbt as of yet.
Our goal is to make this forum as easy as possible for patients, caregivers to navigate around to get answers to their questions. The majority of new members on this forum do not post questions, they only read and gather information.
I will give your poll a couple of weeks to get others input before any recommendations are made to BCC.
Thanks, JackHi Jack,
Thanks for your quick and thoughtful reply.
At the beginning of our journey, we did not have the energy to read through lots of posts looking for neo bladder information pre surgery and post surgery. Fortunately you gave us names of people to talk too – that was very helpful.
Managing post op chemo therapy was another area of interest.
Statistically I believe NMIBC diagnosis outnumbers MIBC, and over time, I have wondered if individuals with MIBC choose not to post, feeling they are the “only one”. I know that is how I felt as a caregiver.Ieva
I think Ieva there are a number of factors. The latest stats show approx. 80% of new diagnosed are NMIBC.
In talking to other support groups in Canada, USA, and UK and not just bladder cancer groups, they find that most posts are from females that either have the disease or are a caregiver of a male with the disease. Prostate cancer no longer has a forum in Canada, they have volunteers who speak directly to the patient or caregiver, a male disease of course. For some reason many males do not post on the forums. Most of our calls to BCC are from males looking to speak to a survivor, so males seem to want a one on one versus a general discussion from many on the forums. The other support groups have similar results including heart disease group. No one seems to have the answer, but many feel this will change over time due to the dominance of social media. Also in the case of bladder cancer, there is a lot more information available to patients today compared to 10 years ago ie books, brochures, hospital sites etc. Facebook for example has many support groups that have their forums there vs their website. Very small world with social media today compared to not many years ago.Hi Ieva:
You’ve brought up a good point about the different paths patients have to take when dealing with BC. When this site first started there weren’t many posts and it was easy to look back for information. Well, we know how that has changed. So yeah, Jack if there is a way to break the information down and have two categories in the forum. I think that it would be helpful. It will be a lot of work though.
I can second the bit about males versus females seeking information. This was one of many reasons that Ben and I decided to switch to a phone/email format for a Calgary Support group versus an in person session. I found that the last few meetings were all men and most of the time they just talked sports, nothing related to bladder cancer. It seemed to me that they like the idea of getting together but it is more for a social connection than a medical one. That being said most of my patient support group calls or emails have been from men, a couple from female caregivers. The calls usually are to get a person diagnosed with MIBC connected to someone who has had the radical cystectomy surgery or questions about BCG.
Today people are definitely more into getting information for a medical condition. I have found once the people in my group have what they need the majority are good to go. Only a few have needed more support than that. So for us, the phone/email connection is proving to be the way to go. Men do prefer the one on one connection and I think speaking over the phone allows for connection but not the intimacy of a person to person meet that is so difficult for many.
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