Invasive or non invasive...

Hi DippyHippy,

Can I suggest you look at the Macmillan leaflet on Bladder cancer? That gives a clear explanation of what is involved.

I can only say what life is like if muscle-invasive, as that's what I had. For me it was 4 cycles of Cem/Cis chemo followed by robotic bladder removal. That took the best part of 4.5 months. And life has been normal since then.

One needs to be careful, especially at first, re lifting and carrying to avoid potential hernias because of  weakness around the stoma site. But many of us manage that OK.

Since then, I was reviewed quarterly for 2 years (bloods, CT scan and oncology face to face review, Urology was mainly telephone reviews except just after the op to check healing and stoma function) plus local support by stoma nurses.

From year 3 I have 6 monthly bloods,  CT scan and oncology reviews face to face so far and after a couple of  6 monthly Urology calls I'm now on annual review.

They all seem happy with me, 3 and a quarter years post op. I think oncology will do a total of 5 years review while Urology may also do the same but I haven't had that confirmed.

Chemo was tiring but doable and got rid of most of the tumour cells. (I had a mix of standard cancer cells plus aggressive cells). The bladder removal op took my bladder and urether away and reviews have been clear so far.

The oncologist later tried me on immunotherapy but stopped it after 3 months when it led to peripheral neuropathy (damped down with steroids but hopefully did enough even short term).

I opted for stoma and bags, which have worked well for me, once normal teething troubles re fit, leaks etc were sorted. Night bags are wonderful thing as one sleeps through the night, emptying only in the morning.

I had no choice but bladder removal although afterwards I could have had a neobladder instead of stoma. That was my personal choice.

Quality of life is very good for me. During Chemo and bladder removal it dipped a bit, but I have built back up since then. The op is long and often compared to running a marathon. I should never have been able to run any distance but survived the op at 70 and am glad I had it. Keeping as fit as possible during and since treatment is essential.

Hopefully one of those on BCG etc here can fill you in from their point of view.

Good luck with treatment.

All the best,

Latestart

(ps click on our names to see our journey, whether male or female etc)

Thank you, you have actually relieved a lot of my worries, I have just had one cancer removed then was diagnosed with bladder cancer and thought oh, no, I can't go through it again...but once the initial treatment is over your quality of life seems very good and that's what I wanted to know that going through another cancer treatment will be good...I have recovered very well from my first cancer removal...so head down and here we go...!!!

Hi Dippy hippy. Welcome to this group that youde rather you weren’t a part of!! For all that the people on here have been amazing and got me through the shock of a diagnosis of bladder cancer. So if it’s non invasive the pattern seems to be TURBT then a second TURBT if they didn’t get muscle in the first biopsy. Which they didn’t in my case. I think two TURBTS are fairly common. Then the MDT decide on the best treatment plan for you and you see a consultant who will explain the options. I opted for treatment rather than bladder removal at that point. I was given BCG treatment. Some hospitals protocol is 15 BCG treatments over 18 months or so. My hospital aims for 27 over a three year period! The liquid is put in your bladder via a catheter and the induction course is 6 treatment one each week then a cystoscopy then a break then more treatment. I’m sure I’ve not explained that as well as the leaflet late start recommended! 
anyway I wish you well as you walk this road and post anything anytime as people are always here to listen and understand. Love Joyce x

Thank you...my diagnosis was pretty much a shock, Found while having an MRI scan for the cancer I already had.  Yes the TURBTS that's what I'm having...then whatever treatment afterwards.  Your lovely words are warming, love and wishes.

Much has been said but try not to over think things until you know what you are dealing with. Worrying about it doesn't help so just try to wait until you have the answers to questions you have. 

Once you have answers and a treatment plant it makes it easier to deal with somewhat 

Best of luck for your results when you get them. 

Bless you, thank you, that is exactly what I will do.

What a blow for you, to have a second cancer. BC is very treatable if caught early. If yours turns out to be low grade, monitoring can be simply repeating cystos and tumour removal if it recurs - which it commonly does. 
Mine was non invasive but high grade, and I chose surgery for various reasons. I was also able to choose neobladder (internal reconstruction). That was hard work at first, but I got used to my new toilet habits. Now 14 years on, all seems very normal.
It is possible that your kidney disease will determine what treatment options are suitable for you. As I expect you know from your previous experience, once you have a plan in place, things feel more settled. Hope all goes well for you. 

Thank you, very encouraging...!!!  I have got my mind adjusted to either outcome and I do seem at ease with it.  Fourteen years, incredible...!!!