32 year old female with neobladder

Hi everyone-

Just wanted to take a moment to introduce myself and share my story.  I’ve been reluctant to post my story because I felt I could handle this on my own and just read other posts to help me cope.  I’m finding that I need more support though as I face the reality and magnitude of all of this.

I am a 32 year old, happily married mother of two boys ages 1 and 4.  I was diagnosed with bladder cancer on April 19 of this year.  I had my first TURB the following day.  Initially, my urologist thought I would be a candidate for BCG treatments, however when the pathology came back and it was revealed that I had three T1, G3 tumors removed, radical cystectomy appeared to be the best option for my survival.  In June, I underwent a radical cystectomy and am now 10 weeks post op.  

Two months prior to my diagnosis, I began experiencing visible blood (gross hematuria) in my urine, but had no other symptoms.  Like many of you, I was diagnosed with a UTI and sent on my way with antibiotics in hand… The blood continued and after a few more labs, I was referred to a urologist.  Due to the fact that I am only 32 and have no risk factors for bladder cancer, no one felt alarmed by my situation – including me.  It came as quite a shock to everyone when my cystoscopy revealed three malignant tumors!  

I am happy with the decision to have a RC and I am thankful for the success I have had to date with the neobladder.  More importantly, I am thankful to just be alive.  Deciding to have a RC was a very difficult decision, but I had ample time to research and was fortunate to have excellent doctors looking out for me.  Along with the RC, I also had 8 lymph nodes removed, one ovary and a hysterectomy.  It saddens me that I will no longer be able to have children, but I am so blessed to have had the opportunity and experience to have two precious little boys already.  I’m happy to share my experience with RC and neobladder, so if you have questions or need to chat, feel free to send me a personal message or respond to this post.  

Most days I am able to go on about my life and try not to dwell on all that has happened.  However, some days it is all so very overwhelming.  I hope the overwhelming feelings will fade in time.  For now, I find myself very fearful of recurrance and afraid to go to the doctor for anything.  Last week, I had a chest cold and managed to convince myself that it was lung cancer… anyone else as paranoid as me?  😮  Realistically, I knew I was fine, but I was so blind sided by my cancer diagnosis, that I second guess myself now and every little symptom that arises.  How have you dealt with your fears?   I place my trust and faith in God and know that he will see me through whatever may come.  Some days I lose focus and all of this just really bothers and upsets me though.  I look at the faces of my two precious boys and I pray I will see them grow up.  I’m not afraid of dying – I am just hurt that my children may not have a mother and I want them to know how much I love them and how dear they are to me.  I think the pain of not being here for my babies hurts more than the pain from the RC.  

Looking forward to hearing from some of you.  I’m grateful this board exists so that we may lift one another up and know that we are not suffering alone.  Take care, Angela

Angela Author