New Member Introduction

[tom67inMA]

Hi All, I finally got around to looking up the bladder cancer forum here on HealthUnlocked and thought I'd introduce myself and tell my story. I'm Tom, and I was diagnosed with bladder cancer last October, had a TURBT procedure, and some kind of chemotherapy solution was injected into the bladder at the end of the TURBT but no other bladder cancer specific treatments since. In fact, I've largely ignored my bladder cancer and haven't worried about it much because....

... about a week before the bladder cancer diagnosis I was diagnosed with metastatic prostate cancer. All my attention so far has been on the prostate cancer, but now that treatment has that under control I'm starting to think more about the bladder cancer. I have my next follow-up cystoscopy next week, and I'm feeling very nervous about it.

My dad also had bladder cancer, and it kept recurring, and recurring, and after 10 or 12 TURBT procedures (not sure exactly how many, but pretty sure it was in double digit land) they had to remove his bladder. To make a long story short, complications from that surgery took his life several months later.

So now that I'm no longer scared to death of dropping dead tomorrow from the prostate cancer, I have more time to dread cystoscopies, potential recurrence, and all the unpleasantness that could bring.

That's my story so far. Hopefully the systemic chemotherapy I had for the prostate cancer also took out any remaining bladder cancer cells, and my imminent cystoscopy will again be all clear.

As a general question, has there been any new developments in treatment in the last decade? I see posts here about mytomycin and BCG and my dad had those years ago and they didn't seem to work for him. It seems bladder cancer is one of the unloved, understudied cancers.

[PaMul]

Hi Tom67inMA

Welcome to the forum. It sounds like you’ve rather been through the mill with prostate and bladder cancer. Also not a very positive outcome for your dad as an example. Oh my.

Indeed most of the treatment (for non- invasive BC ) is Mitomycin or BCG. I’ve been on the former for 3 years but with a recent 4th recurrence I’m pretty sure I’ll be onto BCG after my turbt in September.

The best of luck for your cystoscopy soon. Fingers crossed 🤞 I see you are a fellow blogger I’ll take a look at that too.

Best wishes for a NED result

[Jim47]

Welcome to the forum. We all have our individual stories, but share a common concern. I was first diagnosed almost 4 years ago. Had all sorts of treatments, nephrectomy, prostatectomy, cystectomy, etc. Each procedure was supposed to be about 80% effective, but I always seemed to be in that other 20%. My cancer metastasized and ultimately spread into my lungs. I had about a year of chemo which shrunk the tumors, but was starting to damage my sole remaining kidney. Luckily, at the point, Keytruda (an immunotherapeutant from Merck) was approved for metastatic bladder cancer with about a 20% success rate. After about a year of Keytruda (with no significant side effects) I had no tumors anywhere. I am still getting this treatment and will have scans later this month. It appears I'm finally in the correct percentage group. Stay strong and keep fighting. There is always hope. We're all here for you.

[tom67inMA in reply to Jim47]

Thanks for sharing your story, I'm very happy to hear that you've finally found what sounds like a miraculously successful treatment after so many failures. I find drugs like Keytruda particularly interesting, because those might be able to go after both of my cancers. Right now I'm only on drugs to block testosterone, which does great things to slow down or stop prostate cancer, but doesn't do anything for any microscopic bits of cancer that may remain in my bladder.

Of course, at last check my bladder was clear and the prostate cancer is under control, so there's no good reason to change treatment plans right now. I am starting to think that in conversations with my doctors I should be planting the seeds of thinking in terms of future treatments that might work against both cancers, instead of treating them as separate and distinct diseases.

[MollyStark]

Hi, I don't have bladder cancer but my husband does and was diagnosed just over a year ago. He's had three TURBT's since then, the most recent almost on the anniversary of the first. He has the mitomycin wash but not BCG. He too is thinking ahead and been doing some research. One treatment that is more popular in the States is blue light. It's more relevant to the invasive deep tumours, but something of interest nonetheless.

My husband is considered young to have bladder cancer and so operations are less of a risk. I am so sorry to hear about your dad. I believe the treatment for bladder cancer hasn't changed since the 80s but there was some hope in the news recently about possible gene therapy I believe.

Best of luck for your cystoscopy.

[tom67inMA in reply to MollyStark]

Thanks, cystoscopy was clear! My urologist thinks the chemo for prostate cancer could be helping prevent a bladder recurrence. From reading online, there also seems to be a link between testosterone and bladder cancer (this wasn't men get it for times as often as women) but he didn't think that would be very significant.

I can't imagine what your husband is going through. I know my dad had many times where he was just about recovered from one procedure and follow up treatments (I recal that he had weekly mitomycin treatments after a procedure) and would receive the next diagnosis. As a result, "normal time" for him was very limited.

[MollyStark in reply to tom67inMA]

That's really good news! I imagine the chemotherapy probably did have an effect on it.

My husband was told he'll need a cystoscopy every three months, to check if it has returned. He said one day that it feels like he's living his life 12 weeks at a time. But he is very strong-minded and stays positive. Thankfully, the chemo wash treatment doesn't take its toll on the body like other chemo treatments do.

I hope you continue to have the all clear at future checks.

[Kevinski65 in reply to tom67inMA]

I'm in southern NH . I was diagnosed 7 years ago. I was psa 31, stage 4, Gleason 9. Doctor who told me was rather grim. Lupron brought PSA down to .1 ( casodex temporarily for flare). After 2.5 years PSA Rose twice. Signed up for clinical trial for xtandi and prostvac. There were 2 arms one xtandi alone (no prostvac). With lupron and xtandi, I've been at 0.02. Mets melted into dormancy. There were 3, one on scapular, two on a couple vertebrae. I've been given some yearly zometa. For 4 years I've been going to NIH. I haven't been going through as much as you. I've been doing cybernetics and most bone pain is gone. Cybernetics you can do anywhere. It's something I've been doing recently. I sense you're nearby in Massachusetts. Love to talk sometime, if u want.