Just diagnosed. Time to get educated.
Hello. I just discovered this forum. I’m a 62 year old male and feel like I’m on a fast roller coaster of new information, events and emotions. On May 27, I had a consult with a urologist because of blood in my urine. A week later a CT scan showed two nodules in my bladder. A cystoscopy another week later to get a closer look and confirmation. 10 days ago I had a TURBT to remove the nodules. The pathology report came back within days, saying:
- Noninvasive high-grade papillary urothelial carcinoma.
- No invasion seen.
- Muscularis propria (detrusor muscle) is present and not involved.
The urologist messaged me a couple days later to say “The pathology did confirm bladder cancer. It is not invasive into the muscle which is good. The treatment will be BCG which is a bladder instillation. We will discuss more soon.”
My follow up appt with him is on next Tuesday (July 5). So now I need to learn what all this means. Any input on learning resources or knowledge about that specific diagnosis would be greatly appreciated!
hi s as ms welcome. We are a very supportive community here to help you anyway we can. Here are some articles that may help. https://bladdercancer.net/treatment I know it is a lot to take in at first, especially as most of the terminology will be new. These articles should help. If you have any specific questions, please ask. We are not medically trained but have a wealth of personal experience to share with you. Wishing you well with treatment and plenary keep in touch to let us know how you get on. Laura, Moderator, BladderCancer.net 
@Birdwatcher - I am not a medical professional and therefore cannot provide medical advice. It does appear that you are moving along with treatment that seems to be usual for non invasive. You are very fortunate to have your cancer diagnosed so quickly and treated while it is still in an early stage. Many on this site were not as lucky. BCG is a treatment that is instilled into the bladder to try to reach the cancerous cells and attack them. From others I know who have had this treatment, it is usually given once a week for 6 weeks followed up by another cysto to see how the treatment worked. I suggest that you take in questions to your doctor to find out all that you can about your stage and the treatments. Please keep up posted as we are here to support you all the way, My best Linda Urbanski ( moderator, Bladdercancer.net team member)
, unfortunately, welcome to the community. I'm slightly in front of you on this journey (TURBT #1 on 24Feb2021 - large, high-grade T1 tumor (non-muscle invasive but both ureter orifices involved)), and will share a bit of what I have found out.
- bladdercancer.net is a great forum to ask questions, and get additional info as Laura provided links to. It might take a few days / weeks to get an answer, and at your stage things are moving very fast. I also found and find BCAN.org (Bladder Cancer Advisory Network) to be excellent for detailed, up to date information.
- you are in charge of your cancer battle. I tell people I use the East meets West under Heaven's authority approach. What I mean is I now combine traditional (herbal, mushroom, dietary) practices with modern Western treatments, and look to God for strength and
- BCG is the "gold standard" for HG NMIBC (high-grade, non-muscle invasive bladder cancer), but it's in short supply (only one manufacturer left in the USA).
- I had the induction (6 weekly treatments) followed by a 6 week rest, another cysto, and then 3 more weekly treatments, and another cysto. On that 2nd cysto I was suspected of having CIS (carcinoma in-situ), which meant the cancer was going to come back and the BCG was failing.
- After a lot of 2nd opinions and 3 more TURBTs, I enrolled in a National Cancer Institute clinical trial (Pembrolizumab and Gemcitabine) I found via BCAN and have been Blessed great success. Coming up on 9 months disease free - praise the Lord, another cysto next week.
This is just the surface of my journey, feel free to ask questions.@Birdwatcher - how did your appointment go and how are you doing? I hope that you are well and that you have been able to have your questions answered and a treatment plan provided if needed. Please let us know how you are doing. My best always. Linda Urbanski ( moderator, Bladdercancer.net team member)
thanks for sharing your experiences. I am glad you have found BladderCancer.net along with other things, a support to you. Great news on your period clear. Take care, wishing you continued good health. Laura, Moderator, BladderCancer.net
