Hi all
I had a bladder tumour found incidentally during a routine pregnancy scan. Following the birth of my baby, I had a TURBT and I was found to have a G2pTa urothelial carcinoma which was just shy of 2cm.
it was a shocking diagnosis to me, because I did not have any symptoms. The cancer was found by sheer luck and my midwife was amazing and thorough. as it was an incidental finding prior to this, I thought bladder cancer was for 70 year old men who smoked (sorry for my prior ignorance) not 33 year old non smoking females.
after the first surgery, my doctor did not put in any mytomycin or BCG in the bladder post procedure as I was breastfeeding and my baby was still quite young and I wanted to continue.
I had a check up 3 months post surgery and I’m scheduled in for another TURBT because there is some further tissue which looks unusual and needs to be biopsied. It now looks likely that they will be putting mytomycin in or BCG post surgery as one dose (with the results of the biopsy deciding if I need a whole 6 week course)
I have a few questions for the wider community which are driven primarily from my own fears and concerns:
1. Are there any others out there in a similar situation to me ie having bladder cancer diagnosed at such a young age. Google (!) has so far only yielded stories of people who had a much more advanced cancer discovered and I would like to speak to others who may have had a similar situation for shared experiences / piece of mind.
2. my doctor is reassuring me that bladder cancer is like a weed at this stage, you need to put regular “weed killer” down instead of it being an immediately life threatening disease. However as a mum of young children, you can guess where my brain went. For those of you living with bladder cancer - how do you find your day to day lives with having to do BCG treatments?
3. this question is very specific to my circumstances and I’ve not found an answer anywhere. I would like to find out if it is possible to continue breastfeeding if only one dose of mytomycin is needed. I know if the longer course is needed, then my feeding journey with my little one is over - but if it’s just one dose post surgery, is it possible to “pump and dump” for a certain period and then continue breastfeeding? All the general guidance assumes mytomycin is being used to either treat a different cancer or longer doses and in those situations I totally get feeding must end as mytomycin is countraindicated. but if it’s the one dose and treatment for bladder cancer means the drug never enters your blood stream and it’s half life is a few hours - does that mean breastfeeding could continue after a certain time. does any know of anyone who has been through this or know an answer?
many thanks to all in advance
Hi Ripon35, so sorry to hear you've had this to deal with alongside being pregnant. Congratulations on your new baby. It sounds like you've taken a pragmatic view and just got on with it all. So very well done you. xxx My initial tumour was Grade 2 T1 and rather huge because GP mis-diagnosed as gynae problems for over 3 years. They obviously thought it's only men too 
Particularly well done for your midwife for spotting it. I am 2 years in to the NHS BCG protocol. It is a long long treatment, involving regular hospital trips. But it works for me. Have you been introduced to a named Clinical Nurse Specialist yet? I have a specialist nurse from the Urology Department at the hospital who I can contact by phone anytime in clinic working hours and she will answer any specific questions relating to my case. Maybe someone like this could help you think it all through? Best wishes x
