Hello fellow forum members from a male with a new diagnosis

After RC I had 2 scans a year every six months and these are continuing as I also had incidental prostate cancer. Some hospital follow ups may have 4 scans in the first year. Each visit usually requires a blood test.

The only additional treatment might be chemo or radiotherapy if he cancer is found in the lymph nodes. In my case, as with many others, it was clear, so no further treatment was needed. 

I just had RC with ileal conduit.No chemo or radiotherapy due to the type of cancer I had.I had scans every few months for the first year or so and regular blood tests especially to look at renal function.Now more than 3 years post op I will be moving onto annual scans from this November providing all is ok with the kidneys.I have some kidney problems.Best wishes Jane 

Hi Makem, you’re quite right, there are many options, which of course is great , but sometimes I think it might be easier if there were 1. However… my thoughts are that it all comes down to risk. If your tumour is truly T2 and no greater ( this only definitively staged in the pathology procedure during and following the RC) . So if the diagnosis remains T2 and there are no lymph nodes involved or further invasion then there are statistics that will help you access the survival possibilities based on the various procedures. I personally was very fortunate to have caught my very rare and aggressive variant form at T1. I was advised that RC was my best chance for a long life so I grabbed it. The post RC pathology verified the T1 stage and my surgeon said that for several reasons additional chemo was not advised. Firstly, Sarcomatoid tumours don’t or so they believe ( it’s very rare so not much data) don’t respond to chemo , secondly, chemo can have many residual complications for some patients and finally chemo for T1 tumour would be over treatment. Got a real good neobladder and am very, very pleased with it. Five years on and healthy and active. Hope this helps a bit. Don’t know anything about radiotherapy but it has worked for some on this site . Good hunting Makem. Orillia. 

Hi Orilla

I follow your train of thought but was a bit surprised to learn the the actual diagnosis is only definite after an RC. I can understand why it may be so.

You have a neo-bladder, one other member posted about one too. Would you be good enough to let me know how you coped initially until control was established please? Did it take long to be confident to go out into the world again without peeing your pants?

Morning Makem, (it’s morning here in Toronto)… in response to the final diagnosis, yes the only definitive diagnosis (stage) for bladder cancer is through examining the parts that are removed including the peripheral lymph nodes. Under staging very often occurs at turp#1, thus … turp #2. The chances of understating after turp #2 are much less but possible. Too much faith is put in CT scans , they miss things . For instance . The reason that I initially sought help was b cause I thought I had prostate issues … you know .. old man BPH stuff. So I had an ultrasound and they found the bladder tumour. So I went through the two turps ( the pathology after Turp #2 was” no residual malignancies “ which was AWSOME . Had the cat scan … “ all clear for spread . Due to the T1 diagnosis but because of the aggressive variant , they strongly recommended RC. I got two other opinions , all concurred. Surprise surprise, the path report post RC discovered aT2 Gleason 6 prostate tumour unrelated to the bladder tumour  . Now a Gleason 6 prostate tumour is the type that you’re most likely to die with as opposed to dying of , but the point is that neither the ultrasound ( which was being performed specifically to examine my prostate) nor the CT scan picked it up. Having said all that , they can’t start hauling out everyone’s bladder at the first sign of trouble so they weigh heavily on the % ‘s. 
  Getting now to the “peeing in your pants thing”…. I had 2 daytime accidents in the period after my catheter was removed both occurred when I was stuck in gridlock on a raise freeway and was unable to get out and find a bush . There were the occasional unwanted squirts ) let’s guess at about 10 , in the first year that teach you to not casually ignore the (what become very obvious signals) as time goes on you never have those either. I liken it to an infant figuring out their new bladder toy , it takes a bit to become accustomed to the new sensations but we are suppose to be smarter than an infant so it should be a very quick uptake. Nighttime is a different story. I always wear a pull-up diaper with an added pad that I fashion out of tissue. I do have the occasional nighttime squirt but that sensation wakes me out immediately an the breach never gets to the diaper itself, so I get about 5 days out of a diaper until it gets too stretched and then I toss it. I get 8 hrs sleep a night with 1 to 2 trips to the can / night . Other than these minor inconveniences my body is the same (better ) than before the removal. I look at it in a positive light, I got rid of two of the main cancer sites for men in one fell swoop.

I’m now 5 years cancer free , I ‘m 71 still work as a contractor water and snow ski, bike( which is much better without a swollen prostate) go to the gym 4 times a week and life is great. So that’s the poop on all that . Hope it helps. Orillia.

Hi

The issue with prostate cancer is that is really only detected by a biopsy. Mine was only discovered at surgery

Thanks Orilla,

Are you aware that males can use a condom with tube to a bag overnight?

Yes I am Makem, but I have never gone that route for several reasons. Firstly , I have never had a problem going back to sleep once woken, I realize that some do and the cath route may ensure a more restful sleep. I go off the second my head hits the pillow , so that is not an issue for me. Secondly, after 6 weeks with having the Wee Guy lassoed to a bag after RC and then for another week after double knee replacements , I swore to never be that unkind again. Thirdly , It kind of felt like It was giving up. By getting accustomed to peeing while you sleep seemed like a big step backwards and I’m a look forward kind a guy. Orillia.

Hi Orilla, I forgot to ask, would you mind telling me your age when you had the new bladder? I am 85 this year and I am wondering how I may cope.

For what is worth, in my opinion you will do fine.  However, if your Medical Team are offering you the option they must feel that you would be able to cope.