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

Hi @jowilliams1

I am sorry to hear you were diagnosed at such an early age. I would think you are referring to RC (being a "newbie" here) indicating you have had a radical cystectomy is this correct? I am filled with questions but am not quite sure where to begin.

If, in fact, you did have this surgery - may I please ask what ultimately made you reach this decision? I see, sadly, that bladder cancer is unrelenting for so many, unfortunately, and I can certainly understand someone who has gone numerous TURBT treatments and then the follow-up protocol, could become so discouraged they would willingly opt for this.

I have just begun on this dreaded journey and am scheduled for my first of six BCG intravesical therapy treatments tomorrow. I feel as though my wide-ranging emotions have been tossed into a cement mixer and somehow the mechanism has broken and the drum is continuing to turn. I suppose that fear, unrelenting anxiety and apprehension is part of the road we all inevitably will travel with this diagnosis.

I was heartened to hear you are doing well now and may you continue on this path from here on in. I wish you stable health and much happiness in 2026. I admire your emotional fortitude and courage.

There is a poem by Emily Dickinson which comes to mind:

"Hope is a thing with feathers That perches in the soul. And sings the tune without the words, And never stops at all."

😊

@deidre77

You are very sweet. I'm happy to share. I know it helps to learn about others going through it. Yes, I had chemo for three months and then a radical cystectomy in Nov 2024. I was young and healthy enough to have a neobladder option so that's what I did. I was not given another option on the RC though. It was a larger muscle invasive tumor so the bladder had to be removed. All of the doctors I consulted with agreed.
I did a year of immunotherapy after the surgery. I finished that in late November. I go back in March for another round of quarterly scans. I feel great though. Very thankful for my entire medical team.

I hope everything goes well for you tomorrow!! I will say a prayer. 🙏 Let me know how it goes please.

@michzn Hi there,
Thankyou for your words of encouragement.

@jowilliams1

Thank you for your prayer - it worked.

I found the first BCG instillation very easy; subsequently - neither blood nor burning upon urination.

Unfortunately, since there had been a huge snowstorm a few days ago and mounds of snow/ice left as a present, upon exiting the car I fell onto a large bank of hardened snow. Since there was no one around at the time, I struggled mightily (hmm... a slight exaggeration) and finally managed to stand. Now, I have the physical aches and pains as a reminder of that visit.

At any rate, this is only the beginning of what I know will be a long and arduous journey so I do need to mentally and emotionally prepare myself. Having suffered from major unipolar depression in the distant past, I am thankful for the good people (like yourself) in this group who lend their much-needed support and demonstrate courage and determination which I hope to emulate.

To all the member of this group, I send my sincere best wishes.

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

@jowilliams1

Hi again,

With reference to your experience, you certainly have gone through quite a lot.

If I may ask, how did you emotionally cope when you had no other choice but to have a neobladder? How did it affect your every-day life once you became accustomed to this transition?

I assume you must have had a very strong support system. Somehow, I sense you have a tremendous inner fortitude and from what you say, have adjusted very well and are living a productive and good life. Of course, there must have been some stumbling blocks along the way which is to be expected but apparently those were surmounted.

Thank you for sharing. May you continue to be well and enjoy your life.

@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?

@deidre77
Oh my goodness!! I'm glad it went smoothly (minus the fall).

We are all stronger than we think we are and I will continue to pray for your health, both physical and mental. You are a sweet person, I can tell. You can do this. Keep sharing and it may help. Support from others sure does mean a lot. Ask for help if you need it. 🩷

I never smoked. I had no factors listed. It just happened. Possible second hand smoke from my years of bartending in the 70s.