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I am Mike. I was diagnosed 3 years ago this Fall. Two bladder resections followed in December 2009 and into January. After recovery came the first 6-week round of BCG immunotherapy treatment; since then, BCG maintenance one day each of 3-weeks every 6 months. All of that with cystoscopy checkups every 3 months. So far, checkups show no recurrence. The original tumour was an aggressive level of cancer but it was caught early.
The 3-year round of maintenance is ending this November. I am not sure what is to follow, but likely it will be one cystoscopy every 6 or 12 months. It has been a long haul these past years.
I did not realize Bladder Cancer Canada existed. I don’t recall any mention of it from my urologist or in literature. My wife and I accidentally found out when news of the fund-raising walkathon was broadcast on CBC yesterday.
I’ll have to post more later. What I have had time to read from others in this forum and elsewhere on the website, more or less, is just what I experienced. I am hopeful about getting an ‘All Clear’ but the 80% recurrence fact is a sobering reminder. Sigh.
Regards,
MikeWelcome to our site! Glad you found out about the walk and discovered us.
Lots to read about and learn about here.
My advice is to believe everything that is posted from Western Canada, only believe 10% from Texas and be suspect of things from Greg.
Here’s to many more All Clears.
Valerie MacLeod
Calgary!Hello Mike. Welcome to our site of bladder cancer thrivers, survivors, alivers and drivers. Sorry you’ve had to do this alone, but no more. Not only so, you have valuable experience that you can share with us to make the journey for others somewhat easier.
Did you say CBC? We also were on Global and CTV. However the message gets out, it’s terrific because we all need a shoulder to lean on occasionally or at least an ear to listen. Please now get some of our literature and take it back to your urologist’s office and educate him. ONe person doing a little education about this organization can do an awful lot.
All the best going forward with your cystos.
GregHi Mike and welcome to our group of bladder cancer survivors. I too have BCG and maintenance treatments and have been all clear since 2007. Our goal here at Bladder Cancer Canada is to support and assist fellow survivors and the caregivers, get the word out to the public about the early signs of the disease and to advocate and fund much needed research. We are always looking for patient advocates and volunteers. With your experience and knowledge of this disease you are a perfect fit.
If you can spare an hour or two a month just private message me.
All the best,
JackThanks folks for the welcome. Is Val really from another planet? How does that relate to the GTA being centre of the known universe?
Oh – I meant CTV, not CBC. How could I confuse private, for-profit with public broadcasting?
Jack: alas, I do not have time to volunteer or advocate. I have been working full-time for these years of cancer/BCG struggles. I can barely keep up with other commitments, including fitness and exercise (battling problems keeping my weight down). I will donate though, once I get another chance to get online. Gotta go.
Regards,
MikeWelcome to the site Mike we can always use others to share their experiences & offer insight about bladder cancer. I’m sorry you’ve had to walk alone these last years but not any longer. Take care.
FloHi Mike, Welcome. First of all Val is really from Earth. Greg however does has brief psychotic reactions and a Schizoid personality. I think there was a campaign once to eliminate him from Earth, well, not really eliminate him, although that is a thought. But bladder cancer does indeed exist and we are here for you. Keep us posted and good luck to you.
Kiowa
Welcome to our site. You did very well to get through 3 years of BCG. Not many people get that far due to serious side effects. Now that you have met us don’t hesitate to post as often as you like. We welcome your insight and experiences. Unless the doc has indicated otherwise you will probably just have regular cystos from here on in. The fact that you were able to do so much BCG ups your odds of being in the 20% that are cured not the 80% reccourence rate. As for volunteering don’t worry about it. Just join us for the comfort and support. It is terrible to struggle alone with your feelings.
I think we may have the statistics reversed. My uro says with BCG treatment there is an 80% non-recurrence rate. Without it, the opposite.
Thanks Ses. I stand corrected. I was thinking the wrong way around. My uro told me that if you do 6 weeks BCG the risk of reoccurence is around 30-40% but one year of maintenance or more can lower the risk to about 10-15%. Either way BCG is still the gold standard to prevent reoccurences and if they do occur the drug lengthens the time between reoccurences and the likelihood of them going invasive.
Thanks again, All. The BCG upcoming a few weeks will make 24 over 3 years. Some treatments went well; other than peeing molten lava and some fatigue, no great aftermath. Others were involved significant fatigue and devastation for several days, even a couple of weeks. I get lots of support from my wife and friends (not alone all these years). I have a cysto a week from Monday, when I can ask my uro what is the regime for 2013 and onward. I’ll post again later this month what is his declaration (prognosis).
It is amazing to read where everyone is posting from — all across North America. A global bladder village 🙂
Regards,
MikeCysto today shows no recurrence, only the usual irritation at the site of the bisection scrapping (which he says is no problem). Uro says we can go to cysto checkup every 6 months for 5 years, which is way better than the every 3 months endured for the last 3 years. Last 3 BCG treatments start in about 2 weeks. Feels like a milestone.
Regards,
MikeA milestone for sure! Congrats on the all clear and good luck on the upcoming 3 BCG maintenance treatments.
Smile, laugh, and happy dance.
All the best,
BCG = Bladder Cancer Gone
Jack
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