Recently diagnosed & scared

7 months 1 week ago #59962 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
Thank you. Makes sense!

Please Log in or Create an account to join the conversation.

7 months 1 week ago #59963 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
So bottom line is muscle invasive requires bladder removal plus potentially the prostrate and lymph nodes.

I have read a little but damn the more I read the more it scares the shit out of me. Sorry if I am imposing on the community.

Please Log in or Create an account to join the conversation.

7 months 3 days ago #59990 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
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

Please Log in or Create an account to join the conversation.

7 months 3 days ago #59991 by sara.anne
Replied by sara.anne on topic Recently diagnosed & scared
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!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

Please Log in or Create an account to join the conversation.

7 months 3 days ago #59993 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
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.

Please Log in or Create an account to join the conversation.

7 months 3 days ago #59994 by RileyNH
Replied by RileyNH on topic Recently diagnosed & scared
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.

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne