Jean_Pierre51
Welcome to the forum and I am so sorry to hear about your recent diagnosis.
You have come to the right place for input and support, all of us here have been through your situation at one time or another.
I received the same diagnosis in April of 2019, mine started as low-grade, but after the second TURBT and another tumor was found it was changed to high-grade non-muscle invasive urothelial carcinoma with CIS.
BCG s an immunotherapy treatment that has been around since the mid 80's (someone can correct this date if I am wrong). that has excellent success rates. It is not chemo or radiation, it uses the body's own immune system to fight the cancer.
The markings on the bacteria are similar to those on the cancer, so the body 'sees' the bacteria and mounts an immune response. This treatment does not compromise the bodies own immune system, nor does it destroy other cells as it works ( the biggest downfall of chemo and radiation treatments). There is no vomiting, hair loss, malaise, etc. (although some people have various side effects, as I did) - it is a relatively straight forward method of treatment.
The onco doc (actually the onco staff) will place a catheter and instill a small volume of the BCG into your bladder (sometimes they move your body position to ensure it 'washes' the entire bladder interior), you will be asked to hold the BCG (no peeing) for two hours - but if you can't don't worry about that. Afterwards you will be told to put around 2 cups of bleach into the toilet and allow the urine to sit for about 15 minutes to kill off any BCG before you flush (we don't want live BCG in the water reclamation system). Usually, you are also asked to bleach your urine for the next 4-6 hours (approximately same amount of bleach to the amount of urine).
The initiation phase will consist of weekly instillations for 6 weeks (typical) after which you will enter into the 'maintenance' phase where you should receive weekly installations for 3 weeks. The maintenance phase will follow a schedule at specific times (3 mos, 6 mos, 9 mos, etc.) getting further and further apart as you progress.
You will have cystoscopies at regular intervals so the doc can visualize the interior of your bladder (they will also collect cells to send to cytology - this will just be liquid from inside the bladder through the scope that has been inserted, so no real extra work or anything). The bladder will show signs of inflammation, redness, etc. - this will be normal because of the immune response. The cytology usually comes back within a couple days stating whether cancer cells are present or not.
There will probably be discomfort from the treatment (everyone is different), there may be urgency to pee, malaise, aches, bladder spasms, and tiredness. All of these are usually pretty manageable - especially by keeping the onco doc and the onco staff informed of any issues you are having. Spasms can be treated with OTC or prescription meds (Oxybutynin and Myrbetriq are two common meds for bladder spasms).
I hope this is not too much information at one sitting, my apologies if it is - you can digest it slowly.
Remember we are here for you and to help you go through this difficult time - at least in spirit.
Use whatever resource you have available to their fullest, ask for help and understanding from those around you and the group.
Keep us in the loop as you progress - both the GOOD and the BAD - we want to know.
I have faith you will get through this and come out the other side with dignity and grace.
Let us know if you have questions and concerns and we will all provide our experience, strength, and hope.
Try to have a happy holiday season as best you can.
Ciao
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