Our journey so far
Back in 2016, my hubby woke to blood in his urine and had tumors removed. My hubby had high CIS grade but not into the muscle wall. He started BCG and overcame them all; he stayed strong, unlike me. I worried alone but tried to keep positive as much as possible for him. Now, seven and half years later, It's back. The shock knocked us sideways, but he remained strong and got on with it. He had his camera last week, and the urologists said they will laser them. He had his yearly scan with contrast today, so now we are just waiting again. We are worried about it spreading or going through the bladder wall. So, fingers crossed again, trying to stay positive. Sorry for going on, but it feels like here we go again. It's so hard to remain strong, as you all know. I'm struggling but so proud of my hubby.
Hi
I am sure this was a total shock. I am so sorry that both of you are going through this again. You are always welcome here to share or vent! Please keep us posted. Sending you and your husband strength. Jill (Team Member) I noticed blood in my urine for over a year before I was referred to urologist where in situ was diagnosed. Had surgery to remove in situ. Then, during follow-up appt. to start bcg, urologist said he found a a grade T2B muscle invasive tumor during in situ surgery that he missed during initial scope. So, his recommendation was bladder removal (cystectomy) that would be replaced with urostomy bag. This was a large medical organization that offered only this procedure to treat my condition.
My second opinion was conducted at the urologic oncology dept. at a premier medical center where we live in California with lots of doctors who specialize in treating bladder cancer. (My wife searched for the best rated bladder cancer hospitals in California, chose the one we liked, read about the doctors there, and made an appointment with a doctor we liked.) The doctors here are all highly skilled and experienced and do a high number of urinary cancer procedures. And, I will say that by discussing my condition and options with a doctor who is an expert in this field made this part of our journey much less stressful.
So, because of my diagnosis, (I listened to my doctors recommendation) and had my bladder and prostate removed via radical cystectomy with neobladder. I was in the hospital for one week and recovered at home for 4 months. I was 50 years old when I had my surgery and have lived with my neobladder problem free for over 20 years.
Anyway, sorry for the long post but I want you to know that your quality of life can be fine when you put your trust in highly experienced doctors
who specialize in treating bladder cancer, and who are almost always associated with major medical centers and teaching hospitals.
TimTim, thank you for sharing your story with us. You make such good points and I know our community appreciates hearing about your successful journey. Jill (Team Member) Tim, thank you so much for not only joining in on the conversation here but also sharing some great insight. It sounds like you have had a long journey with this. Do you have any advice or wisdom to share with newly diagnosed community members? Please continue to keep us posted on how you're doing, and if you're ever so inclined to share more about your experiences, we would love to hear from you. You can click the link below to share your stories with our community. Sending gentle hugs and positive vibes your way! -Beth (Team Member)
https://bladdercancer.net/stories
