Bladder cancer, Bladder removal

Hello Jayne79 and welcome to the group. Sorry to hear of your new pelvic worries after having RC. I hope they have some treatment planned for you. Plenty of support here for you as you go forward. Best wishes.

Hi Jayne79,
I had 2 years between bladder removal in 2020 and cancer returning in pelvic lymph nodes in 2022.
We have to be positive people, so on the plus side because we were in the system we were both having regular scans ( I assume you were) and so the recurrence was picked up early.

For me that meant going on a clinical trial and have been on it since October 2022 (18 months now) and have 9 weekly CT scans which are now showing NED (no evidence of disease).
I do have my share of side effects, and it will be a life long process, but every year,month,day is a bonus. And treatments really are improving.

Maybe you could speak to your oncologist and ask about clinical trials? And if not available, get the current standard treatment and try and stay positive.

cheers
Chasam

Good morning. Aww I am grateful,  for reassurance.  And reading stories , whi have gone through it. I  am not alone... when I had my bladder removal, due to bladder invasion.  They also did a full hysterectomy.   Aww I reamin positive throughout it all. Cos there's nothing I can do .May I ask what treatment.  Yoi had I know you mentioned clinic trials. Did you receive chemo or radiotherapy.  ?  They had said I was young for all this to happen..I am.almost 45 years old x

Hi Jayne79,
Clinical trials have a window where they enrol patients and once full that particular trial is closed, but others will open.
My trial (now closed to new patients) is labelled EV-302, and initially I was having immunotherapy and a targeted chemo called Enfortumab Vedotin. Interim trial results are extremely promising. Google it.
I had issues with the immunotherapy so stopped that after about 13 months and now just on the EV.

44 is young for all this to be happening to you and I’m sorry for that. I was 53 when diagnosed, 57 now.
BC used to be classed as an older persons cancer, but it does seem more and more younger people are affected.

Apart from getting the latest treatment, clinical trials can provide a dedicated trial team contact and more observations and more regular scans. And of course you are helping the progression of cures for cancer.
A down side is obviously some trial drugs may not be as good as the current standard treatment.
Luckily for me, EV is potentially a game changer for BC. Unfortunately it is not available on the NHS (yet) but I’d hope that changes once the trial is complete and full results announced.

All the best with whatever treatment path you go down.

cheers
Chasam

Is EV available privately or elsewhere in the world

Hi Leo1,
EV is available privately. I don’t know any details but my oncologist is/was also treating a private patient.