Just diagnosed with bladder cancer: Feeling overwhelmed

I had one tumor on my bladder and it was removed. It was consider CIS--Carcinoma In Situ It had not reached the muscles. Following the surgery, my urologist suggested BCG treatments. It was one dose for six weeks, then another three weeks followed by three more weeks. I had a cystoscopy in between the treatments. My last tests came back clear but I still have to have a follow-up cystoscopy in June.

Some people here have shared their reaction to the BCG treatments so you should read those. I have to say it was difficult for me since it required holding the treatment in the bladder for two hours. Through the grace of God, I managed. I could not tolerate it after the second round of three treatments. I am still not back to normal regarding frequency. However, that is another post regarding the various recommended treatments for that.

Like you, I did not have any family members with the bladder cancer diagnosis. Also, I am not a smoker which was one of the main questions I remember the nurses asking me many times. I pray that you will stay positive and find a good treatment plan with your health care team.

It happens. Be proactive. Switch to a NCI center if you can. Good luck!

FYI: even stage 1 can be bad if LVI or a node is positive for example. Ask for CTDNA testing.

Sadly it sounds all too familiar. I completely understand what you are going through and I am sorry you are going through it. I had my tumor specimens sequenced through Signatera - the ALTERA test. I also had my speciman sequenced through the VALAR LABS Vesta Test. Both tests revealed that I would be a better candidate for chemo type of treatments vs. immunotherapy. The Vesta test revealed that I am likely very likely for recurrence vs. progression. My diagnosis is High Grade Pappillary, stage T1a. I attempted to focus on getting as much info as possible from this forum and BCAN and asking questions. I also sought a second option after the second TURBT.
I tried to focus on one thing at a time, meaning the CT scan, hoping the cancer had not spread outside the bladder - it had not, next I focused on the surgery - just the surgery not the result and after the surgery I focused on the result. That was the only way that I could get through this depressing process. I wish you well and I am sorry you are going through this .

@nano2ndlate, I hope your surgery went well today and that you are recovering comfortably. When you're ready I'd love to get an update on how you are doing and when was found during surgery. For now, just know I'm thinking of you.

In case you consider having your bladder removed, I'm glad to share my experience and journey from 4 years ago (79 y/o male). All the best!

@nano2ndlate cancer is overwhelming. There is little time to research and learn as decisions must be made. It is a time to concentrate on treatments recommendations and not that constant thought of why do I have this, why me? You can't blame yourself for a cancer diagnosis unless you have smoked for 50 years. Love your body for what it has given you and will continue to give as you battle this invader. You are wise to use this forum for information in an easily understood format. We are all here to help others through what we have experienced.
My husband had his bladder cancer diagnosed in 2019 and it was muscle invasive and 1 lymph node outside the bladder positive. It has been a long haul through surgeries and treatments but he is cancer free and happy with his neobladder. Please keep in touch and know that we are all here for you.

Nano2ndlate, Your journey sounds familiar. I’m 73 y/o male. Blood in urine. Primary Dr. got me a CT urogram. 3 tumors. Scraping showed they were non-invasive but biomarkers projected failure and they were still going to give me BCG (gold standard). Went to Mayo for second opinion and was very impressed. Found out my local urologist was only going to give me a half dosage of BCG because of a national shortage of BCG. Called Mayo, they did not recommend half dosage and invited me up there. Mayo scraped again and then weekly dosage of BCG for six weeks failed. Cystoscopy showed seven tumors with two now in the prostate. Scraped again and having my last of 6 BCG treatments this week. It’s a journey. Recommend any Mayo place if you’re close. I drive 5 hours one way to go there. Otherwise go to a cancer hospital and make sure you get a full dosage of BCG. I wish you well on your journey.

@kevinpm thanks for sharing. I thought the bio markers determined whether BCG would be successful, but it sounds like they did bio markers on you for another reason. Also, what are the side effects from your BCG treatments?

I am a 72-year-old woman who was diagnosed July 2025. This is an overwhelming process and some days I am better. I just thinking about one action at a time.
I had the TURBT surgery got a second opinion on both the pathology and treatment protocol from UNC Chapel Hill.
My treatment is GEM/DOCE which are chemotherapy drugs placed directly into the bladder.
I have not had major side effects and mostly I have found. I can just focus on one treatment at a time.
I had six weekly treatments and just finished my eighth of 12 monthly treatments. So far no reoccurrence.
Please reach out if I can be a sounding board for you or a support.

@dks2500 I have tolerated BCG well. No complications. Nurses said that some patients who have had chemo prior to BCG have discomfort. Vesta biomarkers indicated only a 60 % chance of success. Just before my third scraping I asked the surgeon about the biomarkers. He said not enough research has been completed to justify the biomarkers predictions. That’s why they still do the BCG even if you have the failure biomarkers. They consider it the gold standard. For men it’s about 90 seconds of discomfort. Nothing to fear. Embrace it and see if it works for you.