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BCG Immunotherapy Treatments, Side Effects & Fighting to Keep My Bladder

I was originally diagnosed with bladder cancer the end of 2016. Within a matter of weeks I went from thinking I was healthy with no thoughts of serious illness or mortality to finding out I had bladder cancer with high grade tumors and was in the hospital for a TURBT surgery. After the surgery I was given about six weeks for my bladder to heal and then had six weeks of BCG immunotherapy (one treatment per week for six weeks).

My first BCG treatment

I had no idea what to expect initially and I’ll never forget my first treatment. The registered nurse who would administer the immunotherapy took my vitals, showed me what to do to get ready for the treatment and then told me she would prepare the distillation and be right back. When she walked back into the room I was shocked to see that she was covered from the top of her head to her feet including gloved hands. I looked over to see the refuse bags with “danger” stamped in big letters. I quickly became aware that this was no simple flu shot type of treatment, but something that was powerful and potentially dangerous.

I was also told I need to retain this distillation for two hours and then for the rest of the day any time I urinated I was not to immediately flush the toilet, but to pour a cup of bleach into the toilet and let it sit there for twenty minutes before flushing. I had been warned of potential side effects so had prepared myself for the worst. I was surprised and relieved to discover I was one of the lucky ones that had minimal side effects. I felt like I had temporary mild flu-like symptoms and was a little tired (I attributed this last to the stress I had gone through as I mentally prepared myself for my first immunotherapy treatment).

Side effects in following weeks

The weeks that followed the side effects got a bit stronger as the effects are cumulative with each treatment. As a friend of mine reminded me, “there is no free ride”. I was fighting cancer and fighting it with strong medicines and there would be side effects.

I finished my immunotherapy treatments and returned in three months for a cystoscopy to check for a return of cancer. I was clear of any tumors and was scheduled for a round of maintenance BCG immunotherapy (three treatments as opposed to six). After that, I was back for my quarterly cystoscopy. I was devastated to learn that some small tumors had returned.

Back for another TURBT

I found myself back in surgery for another TURBT – my second in less than a year. Fortunately for me, my doctor and I were on the same page. Many surgeons are advised to do a radical cystectomy if bladder cancer returns within the first year. My objective, at 69 years of age, was to keep my bladder and surrounding organs no matter what. My doctor was aware of how I felt, and suggested that since the BCG alone was not effective, we should try doing a full dose of BCG combined with a full dose of interferon. Six weeks after my second TURBT I was back in the doctor’s office receiving this stronger dose of immunotherapy.

Stronger side effects and continued testing

Not surprisingly, the side effects are stronger, but they are manageable. In addition to the now familiar flu-like symptoms and fatigue, I also contend with bone and joint pains that can become quite painful. However, this BCG/interferon distillation so far is working. This October it will be two years since my last surgery and if I continue to be cancer-free at October’s cystoscopy, I will go from needing a cystoscopy every three months and maintenance immunotherapy (three treatments – one a week for three weeks) twice a year to three years of having cystoscopies done twice a year and maintenance immunotherapy once a year.

In addition to doing the cystoscopy, my doctor also does a bladder wash, a cytology test that is sent to pathology to check for any microscopic cancer cells that might be too small to be seen during a cystoscopy. It’s an added reassurance for me (and my doctor) that “so far, so good”. I will be 72 in about a month and I have made the decision to do what I can to remain healthy, but to keep my bladder no matter what.

Doing what works for me as I get older

Side effects continue. Some are permanent. I am more fatigued and get tired easier. My guess is that part of that is just that I’m getting older! One of the more troubling things I deal with is that bone and joint pain. With each immunotherapy treatment it becomes a tiny bit more painful because as I mentioned, these side effects are cumulative. Plus the interferon does cause scarring in my bladder so my bladder becomes functionally smaller. These things are a small price to pay for being cancer-free and not having a radical cystectomy. Other people – especially younger people – would probably choose to take another route. What I’m doing works for me.

Giving myself permission to slow down

I’m one of the fortunate ones. I’m retired so if I have to take things slower or allow myself the luxury of “taking the day off”, I can do it with no repercussions. Something that if I were still working could be problematical. It took me a while to emotionally give myself permission to slow down without feeling guilty, but I now realize how blessed I am. I can still get everything done I need to – it just takes more time. And I’ve learned that when I have a fun day outing or a day working harder around the house, I will more than likely need the next day to be very laidback and easy. I’ve learned from hard experience, that if I don’t allow myself that downtime, I will pay the price for having pushed myself beyond my limit.

Living life, with love and support from others

My doctor has said that he fully expects me to die from something other than bladder cancer because we have caught it early and we are keeping a close eye on things. I’m blessed and I know it. I continue to enjoy my life to the fullest. I have family and friends who love and support me and that’s critical to my emotional well-being (I’m single and live alone). I have a medical team that supports me and treats me as part of the team and is willing to work with me. My doctor/surgeon is not just an excellent surgeon and doctor, but takes the time to talk with me and treats me like a human being and not just “a patient”. I kind of figure that I can’t ask for a whole lot more!!

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

  • Lindaj
    3 weeks ago

    Thanks so much to everyone who replied to my post. It DOES help to get the information from other people’s experience. I really appreciate it. If I can get the anxiety level down,everything will be so much easier. Linda

  • Sarah Wallin moderator
    3 weeks ago

    @lindaj, I’m so glad that reading about other’s experiences has been helpful and comforting for you. We are so glad you came here for advice and support. The anxiety can be difficult. Do let us know how things are going for you, I’ll be thinking of you as you enter the next phase of your journey. Take care, Sarah (BladderCancer.net Team Member)

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