BCG side effects vs. post-TURBT Gemcitabine side effects

 Please forgive me if I should know all about your bladder cancer background. I’m not particularly good at negotiating the website. I am very interested to know about your bladder cancer journey. I have only had one TURBT (two but the first one doesn’t count. The bladder got perforated during that procedure and the Op., had to be halted) and have now started on my BCG treatment. I had my third session today. I haven’t experienced any pain or discomfort with BCG. I hope it will be the same for you.  I did have intravesical chemo., one shot only and had no problems with that either. How awful for you that you have had to endure such discomfort.
 I am very curious to know why you had to have three TURBT’s. I assume, as you are having BCG Immunotherapy, you have NMIBC as I indeed have. My cancer being NMIBC aggresive. Although I am having no physical problems that need a mention, I am not doing so good in my head. Now!! I was full of bravado until very, very recently but on just learning that there will be no maintenance BCG for me if my 6 week induction course of BCG does not show any success I am now scared. Scared of reaching the end of induction and what I will be told. I am female, 82 years old, and having my bladder removed is not for me although I doubt it would be considered anyway. 

Hi warriorprincess and a warm welcome to the group. Gemcitabine and BCG do the same job but work in different ways .  Gemcitabine is a chemotherapy drug while BCG is an immunotherapy treatment designed to trigger your immune system to attack any suspect cells. Not had BCG myself but have been around here long enough to know you cannot predict how you will react . Some people sail through it, some have some mild discomfort while others have a hard time with it. It really seems to be pot luck how it affects you. I hope yours goes well. Best wishes. 

Dear Kenzie, you have already been through a lot and I'm so sorry you are worrying about the next steps. It's easy to say try to live in the 'now' but that is probably the best one can do at any stage of cancer treatment.

Maybe it would help to talk to someone on the helpline? I'm not yet 82 though my husband and many of my friends are. It seems to me that most are still enjoying life, doing things they enjoy, living a good life whatever their health and material circumstances are. And I hope you have a chance to continue doing the same, however this BCG turns out. 

There may be other options available to you then if needed.

As far as stoma and bags are concerned  if you click on my name you'll see I had mine done several years ago and they have given me a new lease of life. They impinge very little on daily life now.

All the best 

Latestart

Thank-you for taking time to reply. 

Hi Kenzie!

I also have noninvasive CIS (and a couple of papillary tumors). I have also been told it is aggressive NMIBC. My first TURBT was sceduled as a biopsy of a lesion seen on cystoscopy but then changed to a "complete resection" of the tumor on the pre-op papers when the cells retrieved upon scope were abnormal. However, for some reason the surgeon only took about half of the medium sized tumor. Upon pathology of CIS/papillary, he referred me to an oncology/urology group. They couldn't get me in for several weeks and surgeon number one suggested we "get the rest" at his hospital sooner, partly because they offer the Blue light technology and he wanted to see it under blue light and complete the resection. (Oddly, his hospital has the newest Cysview/bluelight technology, but they don't administer BCG. The big university oncology folks have only the narrow band imaging, but they administer BCG.) When I woke up, they told me that he got the major tumor but that there was still some "thin, faint" cancer in the bladder floor that he thought BCG would take care of. Fast forward (joke-nothing is fast in the cancer world) and the urology oncologist says that all visible cancer needs to come out before BCG. So...third surgery. 

I will start BCG in September and I am also worried that it won't be effective. I am not usually a worrier, but cancer has my anxiety on high alert! I totally understand where your head is and it is so hard not to think the worst news is coming. Both of my doctors have mentioned that bladder removal is possible if I don't respond to treatment (BCG, etc.) but a primary care doctor said that surgeons are trained to give you those scenarios even if they are unlikely. That made me feel a little more optimistic. I have also read that there is a chemo/BCG combo that they can try after a BCG "failure". In any case, if things get any more complicated/dire, a second opinion is a great thing to get and there are several big research hospitals that do a great job in providing those...some even virtually I've heard. I am glad that your chemo wasn't bad for you. I am curious, did they do intravesical chemo after your perforation or after your biopsy? I also read that it takes 2 to 7 years for untreated NMIBC to go to the muscle/rest of body. 

This cancer roller coaster is not easy and we all have bad days. Keep the faith and try to find some joy in every day! 

Blessings,

K