BCG: It Was All Going So Well

For those of us diagnosed with non-invasive bladder cancer, there is some relief with the knowledge that there are treatments that can stop the spread of the cancer from within the bladder lining. Bacillus Calmette Guerin (BCG) is a type of immunotherapy drug used to treat some non-invasive bladder cancers. It’s given directly into the bladder (intravesical). BCG is more commonly known as a vaccine used to treat tuberculosis (TB). BCG is placed in the bladder to react in a way that triggers the immune system to get rid of cancer cells.

Doing my research

This treatment along with other alternatives was explained to me by my urologist after two operations to remove tumors from the bladder. My medical team were confident that my cancer was contained within the bladder lining. So as a result of this feedback and doing my research on the effects of BCG I opted for this course of treatment. The BCG is given once a week for a period of six weeks through an outpatient department. The drug is delivered through a catheter into the bladder and is relatively painless and takes no longer than 2 minutes. I was told after each visit to go home after treatment to relax and not to pass urine for two hours after. This helps to increase the concentration and of effects of BCG in your bladder.

I basically felt great

At best after each treatment of BCG I felt a bit wobbly and maybe even a bit tired. I could never be sure however if this was in my mind or a reality. When you have cancer and a professional tells you that you may feel tired after treatment, you feel tired even if you’re not. I basically felt great, but took the advice to rest and did nothing for that day. The following day I was up and about, going to the gym or riding my bike with no side effects. I even took to posting on social media, with photos of how great I was feeling and my family were amazed at how unaffected I was. This remarkable reaction to my treatment lasted another four visits and I was looking forward to the end of my cycle.

Until I experienced excruciating pain

Two days before my fifth session of BCG I was working out at the gym and found after 45 minutes that my body temperature was struggling to warm up. The tips of my fingers were also loosing circulation, so I decided to cut my session short and go home. What was to follow after walking through my front door was 48 hours of unbelievable pain. My entire body literally shut down on me. I had major fever type symptoms, excruciating pain in all joints and a severe headache. I was unable to eat and just about managed to take on fluids over the two days. After discussions with my medical team who assured my wife it was a reaction to the BCG, I was admitted to hospital for a further three days unable to breathe properly, with severe kidney pains that could only be eased with morphine. A CT scan was taken that fortunately showed no abnormality in my kidneys, so I was eventually sent home with a course of antibiotics.

A very important lesson learned

I’ve since finished my BCG treatment and I’m now awaiting a biopsy to establish how successful my treatment was. My hope is that I’m given the all clear and allowed to move on with my life with just the little inconvenience of having to get myself checked every three months. It may well however turn out that I’m advised to undertake another course of BCG treatment. If that is the case I will now know for sure that it is very unlikely your body will cope with having major toxins put inside it. Cancer sufferers have to suffer for a reason, which is to ultimately rid our bodies of this disease. This pain will all be worth it if I’m able to achieve this, but either way I’m prepared to go through the suffering.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The BladderCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (4)
  • Pixie91
    1 month ago

    Wow, I am preparing myself emotionally for my first round of BCG after having a total nephrectomy of left kidney and utter from high grade UTUC in March 2018 and TURBT for 3 low grade NMIBC in Dec 2018. It was quite a shock when I went in for my office visit cysto in Dec and he immediately saw I had a tumor at the area of the bladder where the urethra enters. He immediately scheduled for TURBT that afternoon to find 3 other tumors(3 of the 4 were low grade malignancy). Has to change oncology urologist due to insurance before treatment so had another cysto with new Dr two weeks ago and BCG starts next week. I have not fared well with all the pain this far and fear what’s coming. Trying to stay positive but since losing a kidney already and the fact this recurred so quickly has got me freaked out to say the least! Thank you for sharing your experience though. I feel I need to prepare myself with the knowledge of what to expect although I realize we are all different.

  • Sarah Wallin moderator
    1 month ago

    Hi @pixie91, that sure does seem like a shocking experience! It sounds like you’ve been going through a lot lately, with the tumors and switching doctors. How has the BCG been going so far? We know pain and fear can be difficult to cope with…trust me when I say you are not alone. Your ability to stay positive against all odds is inspiring to me. So glad that reading Noel’s experience helped you. We have many community members who’ve gone through BCG and everything in between, so if you ever want to talk you know where to find us. Wishing you wellness and peace of mind as you start this next chapter in your treatment. -Sarah (BladderCancer.net Team Member)

  • Noel Forrest moderator author
    9 months ago

    Hi Andy, I’m glad you were able to get something from my own experience with the BCG treatment. Dealing with the pain factor after receiving BCG has always been an issue for me. At times it’s excruciating and sore, but never really last for longer than a day after each session. I drink plenty of fluids which do help tremendously with the healing process. I was also initially unable to hold my dose of BCG in any longer than an hour. I’ve since took to making sure I get a morning appointment and empty my bladder completely and do not drink any liquids. This seems to work and I’m able to keep from having to urinate. Unfortunately in regards to my treatment they found another small tumour, which was disappointing and was put back onto BCG again. I’m actually going in tomorrow under a general anaesthetic so they can check if the bladder is now clear of any tumours. I’m still convinced my choice of treatment with the BCG is correct and although at times is very painful to live with. It’s never too much to put me off going back. I hope you receive some good news when you return for your check ups and please let me know if there is anything else that I can be of help with and thank you for responding- Noel, (BladderCancer.net Team Member)

  • Andy
    9 months ago

    Hi Noel, Thank you for posting this information, it is very helpful to me. I’ve just had my 4th BCG treatment and have suffered excruciating pains in my bladder. I couldn’t hold the BCG in for longer than an hour and the pains started and continued for approx 3 hours. I now feel very sore and extremely washed out. I do hope this isn’t going to happen each time with future treatments as I’ve got loads more to come. Please let me know the result of your biopsy, I do hope it was all clear.

  • Poll