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Posting concerns

11 years 10 months ago #20058 by wsilberstein
When I was first diagnosed TaG3 + CIS 7¾ years ago, I didn't know about this site, and I found all kinds of information on the net that frightened me - reliable information too, because as a physician I have access to medical web sites, but the information was dry and lacked perspective. I couldn't tell what applied to me. I decided I was better off not reading it.
Now 7¾ years out with no recurrences after treatment of a high grade tumor, I am no longer frightened by reading stories from the invasive boards and metastatic boards, but take comfort in the knowledge that there is life and hope after recurrence and progression.
Meanwhile, I hope that my good fortune gives others the hope that things can turn out reasonably well. Yes, I have some complications that will never let me forget that I had bladder cancer, but had is the operative word.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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11 years 10 months ago #20035 by cljjlk
Cynthia,

You provided a great explanation of where and what this forum should be and for me it is. I'm one of the guilty parties that only drop in occasionally because right now things are going well. I found this forum back when I had my reoccurrence and required eight weeks of chemo. By coming here, I got more questions and concerns answered than from my doctor. When I felt my doctor and his office was not treating me in a manner that I thought they should, it was this forum that I discussed it and got the encouragement to change doctors (a great decision I might add). So you are right, members that are not in crisis should still come by and support the members that are. I will try to be better. Thanks for your sensitivity and encouragement to all.
Chuck

dx - Aug 2005
Five reoccurences (last 12/09 Ta high grade)
BCG Started 10/09 (2 6wk treatment)
BCG Maintenance started 4/10

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11 years 10 months ago #19995 by susant
I started to read a few of the ones not about my kind of cancer , but was getting too nervous. I decided not to read about something I don't have right now.
i also used to look up stuff that made me nervous too. I don'tymore either.

But i do need to talk about this stuff, so i amd glad I can do that here.
So thank you Cynthia and the others that did this site.

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11 years 10 months ago #19916 by pemquid
Cynthia--

That was extremely well put, and I hope those who have been reluctant to post will do so. My blc is in the category of non-invasive and low grade, but I found this forum and started posting just recently when I had a recurrence. Therefore, I agree with you that those who post are in some ways a self-selected bunch and don't necessarily represent the full gamut of bladder cancer survivors. Truthfully, I still don't have my head around the notion that I'm a blc survivor.

The other day I was driving somewhere by myself for a couple of hours, listening to nice classical music, and getting extremely melancholy, thinking about my children, future grandchildren, leaving everybody, etc. I realize that one of the things making me melancholy was that I've been reading in all the threads, invasive, metastatic, etc. I don't know how many others are like me, but I tend to over-research on medical issues (for anyone I know, not just myself). I prefer to know what might be in store, even if it's unlikely. I now realize that I may have been putting an undue burden on myself by reading all the threads so closely. For those of us with non-invasive and/or newly-diagnosed blc, maybe it would be better to focus our posting and reading more on "our" threads, and the types of worries and questions and feedback we can offer to those who are at the same point in the bladder cancer "journey." Fortunately, many of us will never move to one of those other "roads" down which others here have traveled or are traveling. And the folks with invasive blc likewise may not want to dwell in the land of the mestastatic just yet.

I've posted in the past on the ACOR blc e-mail list, and, while I like the set-up here better than there, some of the new folks here might want to look into that venue as well for posting questions and concerns. I know some of the people here are on there as well, including you (Cynthia). In fact, I think I found this site from something posted in the ACOR list.

Keep up the good work--you're doing a great job, and are addressing people's concerns very quickly as they come up.

Ann

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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11 years 10 months ago #19914 by Alan
Well said!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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11 years 10 months ago #19902 by Cynthia
I have received some emails in the last few days from people either dealing with invasive or non invasive blc about their concerns with the recent posting on our forum. I know if one person is moved to email me there may be dozens that feel the same way or share the same concerns. I firmly believe we must face our elephant in the room as a community whatever color it is. These concerns fell into three categories and I would like us to open up a dialog and talk about them.

One person dealing with invasive blc was scared by the recent rash of posts in the metastatic section of the forum that their hope for a good outcome was very shaken by so many seeing progression.

You have to take a step back and look at our community. Most of people that come here and post are either in treatment, dealing with the ramifications of them, newly diagnosed, or facing a reoccurrence of some sort. Once they have moved past the crisis most go forward and back to normal life and no longer need the day to day support this site offers they do not post as often. Because of this the site does not truly reflect the reality of blc, if treated correctly and monitored the vast majority will do well in the long term. It also points out why we as a community need to stick around once we are past our own crisis to support the ones that come after us. Hearing from others that have walked the same path and are doing well is worth more than all the statistics in the world.

Another email was from someone dealing with non invasive blc. They felt that if they posted about their concerns and fears that they would be wrong when so many others were dealing with so much worse.

BLC has many paths and each of us have our own story. Yes most of us can not even imagine how we would handle what some are dealing with here but that does not diminish that for us all blc takes a toll. No matter what your stage or grade you still have worries and concerns that are real. You still need to talk of your fears and have a need for good information and need the validation of others walking your path. When you post about your treatment side effects, your concerns or ask questions you become a blc advocate. Most of the people that come here are dealing with non invasive blc and if they don’t see themselves reflected here they do not get the support they need. Hearing the C word in any context is terrifying, treatment dictions confusing at times, treatments are uncomfortable and have side effects and living between rechecks wears on us all. We are a community dealing with different situations but someone else’s more advanced diagnosis does not diminish the challenges anyone faces with a diagnosis of blc.

I also received an email from someone that hesitant to post because they did not know if posting was always appropriate.

If it is a subject you have dealt with it is always appropriate to share your knowledge. But if you are a woman dealing with non invasive for example posting in the men’s issues to a post about erectile dysfunction that you hope they do well and things start looking up……. it may not be the thing to do. Or if you have never had the need for systemic chemotherapy but post that your grandmother did for breast cancer ten years ago and you would rather die than have it personally…..it may not be the thing to do. If you wish to send someone your good wishes, that is always welcome and can be done by clicking on their avatar next to their post and going to their profile and sending them a private on site email or by posting directly to the post if it seems appropriate. It is always appropriate to give someone encouragment when they need it. There is only one category that is reserved for a specific group to post to and that is the metastatic survivor’s discussion group.

We are a community that share a common concern but are dealing with a very diverse disease. Our challenge here is to give validation and support to all that come here no matter what their situation with blc.

Your thoughts?

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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