This is a very do-able treament and I agree with all that has been written here. It is immunotherapy, direct to where you need it, and with minimal side effects. The benefits far outweigh the challenges.
I would only add these tips for men should you find the procedure itself difficult or anxiety-producing:
I found that 4% lidocaine cream (or 4% Urojet gel) placed exterior, on the penis for 4-5 minutes, before being placed interiorly, helped me with the rest of the procedure. It will reduce discomfort during insertion of the gel and the catheter, and it reduced my anxiety over the "next session" in a what is inevitably a long series of procedures. Sometimes nurses are in a hurry, and they discourage placement of gel on exterior. Don't let them rush the placement of the gel to the interior, without a few minutes for it to take effect on the exterior. (It does not fully numb the area but it sure helped me, and numbness subsides within minutes.)
If you find yourself becoming anxious over the procedures (I did after a while), ask your Uro in consult with your primary care MD for a low dose of Valuum or Ativan to calm you. This means, however, that you will need someone to drive to and from treatments.
Not everyone finds this procedure uncomfortable, it was simply so for me. You may find it is easy. Either way it is a fast procedure. It took longer to get undressed and dressed again than the procedure itself.
All the after-procedure care noted in these posts is wise advice. My treatments were Friday afternoons and by Saturday evening I felt 100%, easy to work on Monday.
Perhaps the best advice I can give you is twofold. This is very doable and a lot less problematic than systemic chemo. Also, take it one day at a time and this treatment will simply vanish as you go. It becomes a distant memory.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
My experience is similar. Going on two years of BCG. My symptoms were as Sara.anne described. For about 6-10 hours after BCG I had urgency, i.e., I'd no sooner get back to bed after urination and I'd feel like I had to go again. I also had cramping of bladder (spasms) which basically is a strong sense of urgency. Its uncomfortable but I wouldn't call it painful. For me this was the most annoying symptom.
Other symptoms were mild fever and chills. I required several blankets for a couple of hours. Fatigue the next day - kind of like the day after having the flu and your fever broke. Felt tired and slept for a good portion of the day.
I found that taking Ibuprofen helped with the fever/chills. Also an over-the-counter medication called AZO was very helpful to reduce some mild pain upon urination which I experienced. I suspect that was simply a reaction to the catheter. I highly recommend getting some AZO and taking it about one hour after getting home from treatment.
You might notice some blood and/or "clumps" in urine for a while. I'm told this is normal as the medication is clearing the bladder.
Hope this helps. As Sara.anne said the discomfort is temporary while the benefits can be long-term. I was always back to full strength within 48 hours. I'm certainly hoping for a cancer-free period as long as Sara.anne's (or longer! ). Its very much worth it. I found that once the initial 6-10 hours pass I enjoyed the time to just rest, read, and watch TV. No phones, no 'honey do' list, etc. I am thankful we live in a time when such medical help is available.
There are a LOT of reports about experiences with BCG on this Forum. I would recommend for a start that you use the Search function at the top of this page. Please remember, however, that people who have issues are much more likely to post than those who sail through.
Briefly, my experience was fairly typical. I was diagnosed with CIS and had 6 initial treatments followed by maintenance treatments over a period of about two years. At first the side effects were minimal, aside from the first six hours or so when I had cramps and passed blood and had urinary urgency. The next day I was a little fatigued. As the treatments went on and the body became sensitized to BCG with the immune system kicking up (which is what you WANT to happen) the side effects increased in their severity. I had a lot of burning and urinary urgency, but nothing that I couldn't deal with. As the side effects began to get worse my urologist lowered the dose. I was on 1/3 the initial dose at the end. I was able to go on with my usual activities except for the day of administration.
That was about 13 years ago and I have been cancer-free ever since. Well worth it!!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society