Still here and scared as hell. I have neuropathy, swollen lymph nodes and constant back & flank pain. Not sure how I got hereto quickly. Blood in urine on 8/22. Diagnosed with bladder cancer on 8/28. TURBT on 9/14. High grade and non muscle invasive yet I feel I’m losing the battle very quickly. Try to stay positive but tough as hell. Don’t know what to do
Riley, you have a diagnosis that is probably the second best you could have hoped for. There is a high probability that with a relatively easy treatment course you will have no further issues. But you need to realize this and stay in control. Attitude has a lot to do with how well you get through this.
Can you discuss your feelings and fears with your primary care doctor? He/she may have some strategies or meds that can help you. It is important to be able to face this and fight it.
I have been there and done that!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Thanks again Sara Anne. I have met with my primary and I have been given some anxiety medicine but as you all know this overwhelming. My physical issues are real. My primary has referred me to Dana Farber. They are trying to get me in tomorrow morning. The speed of this decline of physical issues is crazy.
Ok my primary just scheduled me for a PET scan for tomorrow. Those results can obviously alter my treatment and next steps. I would assume if they find cancer activity in other parts of my body then a second TURBT would not make sense since it would be obvious that the bladder cancer was the source since I had a CT that found the bladder cancer originally and no other tumors.
Has this scenario ever come up? Would they schedule for me to have the bladder removed, possibly prostrate and lymph nodes? Getting ahead of myself but I’m a planner and fixer. I need mentally to go through these things. It helps me prepare and feel like I have some resemblance of control. I fully understand I am asking for things and information that have not been verified. Please bear with me.