Newly Diagnosed

By Ana170

1 min read

Hi I’m a 47 year old female diagnosed with T1 high grade cancer carcinoma in situ. In the last 6 months I have had 3 TURBT’s and 1 round 6x of BCG. When I mention my diagnosis and doctor included I’m told I’m so young to have this diagnosis.

Treatment isn't straight forward

I’m scheduled for a second round of BCG and have been offered to be part of a trial for BCG and immunotherapy combined. The doctor did explain there is a 15% chance of missing a window where it can become invasive so there’s always the option to remove the bladder if I decide not to go with the 2nd round of BCG and trial.

This process is overwhelming...

I’m overwhelmed, and scared and having to make these decisions are giving me insomnia. I’m so glad I found this forum and thank everyone for sharing. I’ve been reading the stories which have been encouraging and also educational.

This is my story.

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Dan Franke Member
Ana170 First know that you are not alone. Glad to see you on here sharing. I was diagnosed in 2015 - but fortunately stage zero. So one TURBT and then just yearly monitoring. Just scoped yesterday.yuk! Lucky I guess. But also have stage IV prostate cancer since 2008-no so lucky with this one. But the science is pretty good these days so keep you head high and look for the positive. Can't pretend to understand where you at at-looks like you are battling-thats awesome. Please keep in touch maybe I can offer an ear. My daughter is now in a fight with breast cancer at age 45-hard fight for her too. Hate this stuff. Dan Franke, moderator, <a href='https://bladdercancer.net' target='_blank'>bladdercancer.net</a>.
1. Ana170 Member
 <inline-mention username="Dan Franke" user-id="4197583"/> My father also has stage IV prostate cancer and lives with me and my husband so thank you for sharing and thank you for your encouraging words. I will definitely keep in touch with comfort I'm not alone. 
2. Linda Urbanski Member
 @Ana170 - I had RC/IC - bladder removal with bag - in 2014 after being diagnosed with T1hg bladder cancer. I was 63 and very active. I am now 71 and very active. Long story short, with the removal of tumors in my bladder and cells in my urethra, I was left incontinent and it was not clear if I would ever be continent again. I chose not to try BCG as I might not have been able to hold it long if at all and I wanted my life back without endless tests and treatments that might require RC at a later age when it might not be as easy a journey. I had robotic RC on 9/30/14, in the hospital for 5 days and started a new desk job 4 week later. A bit soon but it certainly took my mind off things. Everyone is different and decisions must be your own. I live a very active full life and would not have done anything differently - but that is me. My concern was my aggressive cancer advancing and my treatments and options be more limited and challenging. I always suggest second options, discussing everything with your doctor, asking every question you can think of and more. In the end the choice of treatment or not, RC or not, needs to be from the patient. My best to all Linda Urbanski ( moderator, <a href='https://bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)
Laura MacKenzie Member
<inline-mention username="Ana170" user-id="4548911"/> hi. We are here to support you anyway we can. I was 40 when I was diagnosed with late stage invasive surgery, so my only option was bladder removal. I know it is scary but I can also tell you that I live a very normal life. There is a lot of information on here and people sharing experiences of both bladder removal and BCG and other treatments. If you have any specific questions just ask. <inline-mention username="Linda Urbanski" user-id="2062957"/> had her bladder removed with early stage bladder cancer and can definitely offer great support too. Take care, Laura, Moderator, <a href='https://bladdercancer.net' target='_blank'>BladderCancer.net</a>
1. Ana170 Member
 <inline-mention username="Laura MacKenzie" user-id="4260298"/> thank you so much for thinking of me! I am hanging in. Staying positive and working through day by day. Finished 2nd round BCG and go back for follow up in 8 weeks. 
2. Laura MacKenzie Member
 <inline-mention username="Ana170" user-id="4548911"/> great progress. Good luck with the follow up and let us know how you get on. Take care, Laura, Moderator, <a href='https://bladdercancer.net' target='_blank'>BladderCancer.net</a>
Linda Urbanski Member
<inline-mention username="Ana170" user-id="4548911"/> - How are you doing? Have you completed treatments and if so how did things go? Hoping that treatments went well and were successful. My best Linda Urbanski (moderator <a href='https://bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member) 
1. Ana170 Member
 <inline-mention username="Linda Urbanski" user-id="2062957"/> Hi yes I completed the 6 weeks about 2 weeks ago and am now recovering. It wasn’t easy but I got through it. I have an appointment in September for a follow up scope and God willing everything goes well. I’ve developed anxiety and am trying to work through it. My blood pressure is a little elevated when they have to take it - white coat syndrome is what they say but I have to monitor it now😩. Thank you for checking in with me and I hope all is well with you and everyone in this forum! 
2. Linda Urbanski Member
 @Ana170 - Happy to hear that your treatments are completed. Anxiety is common with this type of diagnosis. We never really know how things will go but just have to hope for the best and move on. Sounds like you are in good hands and wishing you a clear scopy next month. Please keep us updated and reach out if ever needed. We are always here to support you!1 My best Linda Urbanski ( moderator, <a href='https://bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)