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Take a moment to update us on how you are doing...

- Recap on diagnosis
- Where are things at today? (treatments, symptoms, back to work etc)
- What has been the biggest challenge you have faced?
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35 Posts
Just had my 6 month consult with my surgeon who did my radical cystectomy in July.  No sign of cancer in my new CT scan!  😃
They are unable to clear a path from my good kidney to my regular drain through my stomach now.  That means I have two tubes and drainage bags for the foreseeable future🥴
We are free to travel in Ontario, for theatre or celebrations.  Just take spare clothes and draining equipment.  No need for emergency dashes to hospital if my system leaks or falls out.😀

Still relying on walker or cane, even at home.

Not perfect, but I am a Survivor with a life ahead of me.

Clarke Edward
I was first diagnosed with bladder cancer in jan 2015, which was followed with a radical cystoprostratectomy, followed by adjuvant chemo therapy. Before starting the chemo it was detected that I also have Small Lymphatic Lymphoma. The chemo doses and timeline were adjusted accordingly. 4.5 years of regular monitoring, there had been no signs of a return of the bladder cancer. Things were looking pretty good. However, in Dec. 2019 my routine CT scan picked up metastasis in my L4. A PET scan was then ordered for a thorough scan. We discovered the metastasis in the L4, but also in the T3, a lymph node in my lower back, a mass on my pelvic floor, and possibly in my colon. Next steps are a bone scan, biopsy to confirm in is the bladder cancer and not something new, and radiation for main management. Once that is completed, we will start on immunotherapy with a drug, Pembrolizumab. Hopefully I will respond well to that, but if not there other therapies that have shown good results as well. 
Apparently this type of development, if untreated, has a lifespan of 6-9 months. The Pembrolizumab can double that, and in rare cases, some people live 4 years. Needless to say which goal I am working towards :-)  I maintain a blog at https://livingwithbladdercancer.com that I share my journey with others in the hopes of offering support and help.

Nice to hear from you though sorry to hear of these new developments. Do you have appointments yet for these new next steps?

I have had the bone scan, and it doesn't show anything different than the PET, so that is great news. I don't have dates yet for the biopsy or radiation, though I am expected both in the next week or so. This was definitely not a good diagnosis, however, I will continue as I have over the last 4 1/2 years - staying positive and keeping living in my life.
Good news on the bone scan. We will be here as you go though the next tests and whatever treatment you do so please continue to reach out here as you need 
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