Well still trying to be positive

Hi Mandymay . Try not to read too much in to having a follow up TURBT. It is standard practice, just to make sure nothing has been missed, and further biopsies will give them a more accurate diagnosis. This then determines the next step. The follow ups are usually a lot easier than the first. I hope all goes well. Best wishes. 

Hi Mandymay,

Sorry to hear you had bit of a shock. I also had to have two TURBTS and it's pretty common.

Not really sure why they just don't say at the beginning that we might need two TURBTs to prepare us.

Best of luck on your second TURBT and the results.

Trevor 

Hi Mandymay, It is such a shock isnt it. I went through a similar experience. I also had a second turbt to confirm the initial tumour grade etc. I think it is standard practice, my surgeon was a little surprised when i asked him why I was having the 2nd one “ did you not do it right first time “ ? I very clumsily insulted him i think without meaning to, it was anxiety speaking more than anything else. The waiting and not knowing is really tough at times, we will all be here for you, we know how it feels. Take care 

For sure the worst part is not knowing. I feel your pain. Once they know they will let you know pretty quick. 

Hi Mandymay

It is such a shock to find you have a High Grade Cancer. I was told something similar to you. At my first cystoscopy I was told the cancer would be removed then I would just be monitored. Then after the first TURBT the surgeon said that due to the size (3.5 cm and 1cm) I would need further treatment, probably 6 weeks of Mitomycin, then after the High Grade G3 pT1 diagnosis there was another TURBT. Now I'm on BCG Immunotherapy. It was either that or cystectomy and I could not even contemplate the latter option. It's a massive rollercoaster of emotions. 

I'm sure your clinicians are working hard to get a definitive diagnosis for you then a treatment plan will follow. 

Sending you love and positivity ️  

Ade xx

I had that same shock too. It sets in train a whole raft of tests, discussions, choices etc, which puts you in limbo for a while. Once you're set on a treatment path, you can plan ahead better. Second TURBT probably easier than first - my bladder was less irritated after it. Best wishes.

Thank you Angela 

off for a ct scan tonight then pre op tomorrow hoping to get date of second op soon then the long wait for results I know I will be better once they have a treatment in place I can sort still out then as I’m a full time carer for my husband so I always worry about him more then me xxx 

it really does help having people who have been through it xxx

Best wishes.I know how hard it is being a full time carer and having your own ill health.Do you have much support ? Love Jane x

Hi Mandymay, are you signed up with your local carers' Association? What they offer varies widely but if you haven't already, it's worth finding out. Our county offers a custom Carer's Card. You fill in a form with details of your cared-for person's needs. This is lodged confidentially with the count council 24 hour call centre. Your card has the call centre number, and a unique identifier number. It explains to anyone who might in an extreme case eg find you unconscious, to call the centre and give the number. The centre will then arrange emergency cover to make sure your cared-for person is looked after while you are taken for treatment.

It also serves as a very handy ID for free/cheap admissions to museums, zoos, theatres etc and get discount in some shops.

Best wishes, Denby

Well latest update todays turbt was fine took 2 biopsy today one from where tumour was removed last time and one deep muscle one to check it’s not gone in muscle and brilliant news so catheter wee is clear as a bell so very happy just the 4 week wait to get thorough thank you all for your kind words of support it really is a good tonic just one quick question is it normal to want to pee about every 15 mins I’m guessing it is as I’m drinking like a fish xxx