Were you exposed to any of the classic bladder cancer risk factors?

@deidre77

Honestly, at first I kept waiting for a doctor to tell me they had made a mistake. I had absolutely no symptoms of any problem until about 4-5 months prior to the diagnosis, when I thought I had a UTI but actually didn't. When I finally saw a urologist (it took a while to be seen) she scoped me and wasn’t very good at her poker face. I knew I was in trouble.

I'm no athlete but I'm pretty healthy, walk most days and feel great typically. Since I had no typical risk factors it just didn't make logical sense to me.

Because I'm divorced, my support system were my three older siblings for the most part. My two sons were helpful as well, when they could be. Between family and great friends it helped with my frame of mind so much. I credit them with keeping me positive.

I'm thankful to have had the neobladder option. It works very well. The only difference in my life now is that I go to the bathroom more frequently (about every 3 hours) even setting an alarm throughout the night. I've adjusted to that schedule pretty well though. (Like having a newborn...you get used to the ups and downs in the night).

How did your procedure go??? Well, I hope! How are you feeling?

Hi there,
Lucky me was diagnosed with high grade urothelial cancer /CIS & rare small cell cancer. 66 yrs, non smoker. I have been anaesthetic nurse for over 20 years. So anaesthetic gases? Also exposed to diathermy machine plume over many years. Only in last 5 years in Australia do Surgeons use smoke extractor & a lot continue not to use this equipment. So who knows. Off course the health system refuses to acknowledge link & risk.

I was diagnosed at 63 in 2023 with high grade muscle invasive bc. No family history and a life long non smoker although I was overweight for the last 20 years. I worked in the World Trade Center exposure zone, 2 blocks from the Trade Center. I was lucky to have been on a path train that was diverted away from the WTC and was not exposed to the dust cloud after the towers fell. We were back in the office ~ 3 weeks after 911. The cleanup went on for a very long time.

Yes I was a smoker but quit. Then 20 years later when I was 72 I was diagnosed with my first malignant tumor. Then on my 5-years later checkup another appeared. But this time it was a different type, more aggressive & non-invasive, so now I go in for 6-mo check ups. Dr said I had two choices of treatment with the first one - check ups with the camera or another treatment that is very painful with urination. So I’m considering now to check with Mayo in Phoenix AZ to hear their thoughts on treatments. Any other options does anyone know?
This is Catpaws1948

@141emp

I am sorry to hear of your diagnosis back in 2023. May I ask what treatments you have been given since that time and how effective they have been?

Being a New Yorker, the World Trade Center tragedy struck horror in everyone's heart; it seemed unbelievable. The devastation from every aspect took years and years to recover from and, of course, unfortunately and sadly countless families will have to live with this forever. Somehow, the fact that this occurred still seems unfathomable - that evil to this magnitude can exist.

Having first been surprisingly diagnosed this past summer, I have just begun on this unwelcomed journey but I am thankful for this group of good and empathic people who will lend support when I need it.

I do hope you are doing well presently and am sending my best wishes.

@deidre77 Thank you and my apologies for delay but just seeing this now. I had a radical cystectomy done robotically at Mount Sinai in NY in January 24 with a urostomy. No issues with the surgery or life with the bag. Minimally invasive with 6 small incisions, discharged after 4 days with Tylenol! I’m still amazed. Unfortunately the pathology showed it was stage 3, not stage 2 which was the original thought post TURBT at the local community hospital I started at in NJ. 6 cycles of chemo (gemcitibine and cisplatin); cancer was not detectable based on Signatera after cycle 4. I won’t kid you, chemo was not easy with the usual side effects (nausea, diarrhea and some loss of appetite) plus I developed blood clots in minor veins in my arms. The cancer became detectable again almost a year later in May 2025 and I had 6 cycles of Padcev and Keytruda. Treatment sessions were much easier but bad skin rashes, complete loss of appetite and sense of taste were very hard. The cancer became non detectable based on PET scan and Signatera after cycle 4. The plan would have been to stay on Padcev and Keytruda until it stopped working or until my body couldn’t tolerate it. That happened in Oct 2025. I had lost about 35 pounds and became very weak. My doctor stopped treatment until December 2025. I’m now only on Keytruda with far fewer side effects, eating and sleeping well and maintaining my weight. I’ve just been discharged from Physical Therapy and am getting back to my routine at the gym and life in general. Scans and Signatera remain good . It was very hard when the cancer returned in May 2025 but I’ve learned that this journey isn’t always a straight line and am very blessed to have phenomenal family friends, doctors and medical professionals guiding my care. It gives me great peace of mind. I don’t like to think about what would have happened if I had not listened to my sister and not gone to Mount Sinai for a second opinion. The medical team is truly awesome and I think of my 3 main drs as honorary sons ( that I didn’t have to put through medical school😉)

In 2011 I was given the standard cocktail for Stage 3 breast cancer, which included cyclophosphamide (Cytoxan). As I understand it, this creates a risk for later development of bladder cancer -- which for me showed up in July of 2026. Only about a third as many women develop bladder cancer as men, and smoking is the highest risk factor. As a non-smoking, healthy female, who has survived what is now metastatic breast cancer for over nine years, with minimal treatment but lots of supportive therapies and a nutrition-dense diet, I find it hard not to believe Cytoxan played a role. I'd like to know if there are other women out there who had a similar experience.

If anyone is concerned about the current reduced doses of BCG, I can share that I've been thriving, not just surviving, with half-doses of breast cancer medication for the past four years. Studies show half-doses of BCG to be as effective as full ones, with fewer side effects. Not sure why some doctors are so eager to prescribe full doses, without gauging the patient's personal tolerance.