Just diagnosed with CIS bladder cancer

Hi Scorch22 and welcome to the group although sorry you find yourself here. Once upon a time bladder cancer was regarded as an old mans disease, but over the years we have seen more and more younger people being diagnosed with no obvious background reasons, so you are  not alone. CIS (carcinoma in situ) is known to be particularly difficult to remove fully with surgery alone  and so BCG is used to help mop up any rogue cells and help prevent recurrences and has a good success rate. We know bc has a high rate of coming back and so we are checked regularly and any recurrences can be picked up early and dealt with. I have no experience of BCG so hopefully others will be along to share experiences of it. I am sure you will get lots of support here going forward. Best wishes.

Hi Rily, thank you so much for taking the time to reply to my message really means a lot knowing I’m not alone in this! I was in such shock when I got the diagnosis last Friday that I didn’t really ask any questions was just sort of numb so thank you for answering some questions I had.

I did the usual google searching which was probably the worst thing I could have done, I’m so glad I found this amazing community! 

From what I’ve read I’ve caught it early, I’m say glad I went to the doctors as soon as I saw symptoms!

Thank you again Rily really appreciate it!  

Hi Scorch22,Welcome from me too.This is a friendly group and I’m sure the people who have had BCG will be along to tell you more.I hope you find it helpful here,there is usually someone with the relevant experience to answer questions and everyone is supportive.Best wishes Jane 

Hi Jane, thank you for the warm welcome so glad I found this community. All my family and friends have been amazing and so supportive but I find myself putting on a brave face in front of them when really I’m struggling to come to terms with the news which I guess is natural as it’s only been 5 days since i was told I had bladder cancer.

Being able to speak to others on the same journey has lifted my spirits and seeing so many positive stories makes me feel a lot more positive! 

Best wishes 

Good afternoon Scorch22 and welcome. You tell us you start BCG next week so treatment is moving quickly. It’s not unusual to have a second look TURBT but you haven’t needed that . BCG should be straightforward and only a bit uncomfortable. I’ve had 15 over the past two years and in that time I’ve had a recurrence which was easily removed and I’m presently waiting for treatment for a second recurrence identified 4 weeks ago. My initial diagnosis was G3pt1tcc. I’m one of those old codgers that Rily referred to.  You’ll find all the support you could need on here and with the support from your family you’ll cope admirably, best wishes , John.

Hi John, thank you for replying to my message, I’ve been so overwhelmed buy how amazing everyone has been on here! I am really happy that I’m starting BCG next week as I’ve been really worried after hearing CIS is high grade. 

Sorry to hear you had a recurrence, hope everything goes well with your next treatment John! It’s really encouraging hearing how treatable BC can be if caught early!

Thanks for the support really appreciate it! 

Best wishes, Martyn

Hi Scorch22, my husband has had 6 BCG treatments last year, had another TURBT in November and no cancer cells found from the biopsies, he had 3 maintenance BCG’s in January and waiting now for a cystoscopy to see how it’s going. The BCG treatment is not too bad, they instilled the BCG  through a catheter and you should hold it in your bladder for 2 hrs, on the first appointment he had to wait at the hospital for the 2 hrs and then see the nurse to urinate, if all goes ok you then can just have the BCG treatment then you can go home and urinate there, you do have to take precautions as it’s a live virus, be careful not to splash on your skin and for 6 hrs after treatment  bleach the toilet and leave for 15 minutes before flushing, you will get a leaflet from the hospital with all the info.

jean.

Hi Jean, really appreciate you taking the time to  reply to my message! Such good news about your husbands biopsy results being clear of cancer cells! Thank you for all the info on BCG, from what I’ve heard from all the amazing messages from this community it’s all positive which is what I really needed to hear! 

I know I have to take one step at a time but feel a lot better mentally than I did a few days ago.

Best wishes Martyn

Hi I was also diagnosed with cis  Feb 2021..started bcg treatment in March 21 ..I have had 15 treatments up till August 22  and many camera check ups ..thankfully all OK so far  the treatment had it's rough times but if I had to have it again I would be OK with it .. I am 67 years old  ..you can read my journey if you press on my profile name ..good luck love Tina 

Hi Tina, I’ve not heard of many that have just had CIS on its own so thank you for telling me your story. I’m so pleased to hear you are doing well and that all is ok  so far!

I had just read your full journey, amazing to see how far you have come, I know there’s going to be a lot of treatment and procedures but am looking forward and staying positive!

Thanks again for taking the time to reply to my message, all these replies have really helped me to stay in a positive headspace

Best wishes Martyn