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Bladder Cancer, My Treatment Options, and What I Learned

Bladder Cancer, My Treatment Options, and What I Learned

I was first made aware that I had bladder cancer in September 2016.

I had been suffering from almost continual UTIs for around 9 months. I’d also had blood in my urine. This, however, had only happened the one time.

After taking so many courses of antibiotics, I had lost count. In fact, I had now become resistant to a good many of the “usually” prescribed antibiotics. I was then prescribed a long-term (3-months), low-dose antibiotic.

But the UTIs remained, and I was feeling weaker and weaker; my weight had dropped by almost 40lbs, and people were starting to notice.

Requesting a second opinion

It was about 12 months after my symptoms had become chronic that I requested a second opinion. I was fortunate in that I had private medical insurance through my employer.

A urologist was found, and within a week I had an appointment. Lots of background history was taken and then a sample of urine was sent off for analysis. The results came back and yes, I had yet another UTI. Medication was issued, and I was given an appointment to return in 2 weeks time. On this date, my urologist would perform a routine “cystoscopy” in his office.

I returned 2 weeks later and underwent the “cystoscopy”. It was very quickly identified that I had a quite large tumor in my bladder.

Treatment plan

I got quickly dressed and then sat with my doctor to discuss my options. I was advised that I would need to have a TURBT (transurethral resection of bladder tumor). This procedure was carried out to stage, diagnose and treat the visible tumor.

Two weeks later, I was admitted for a TURBT. It would transpire that I had a high grade, aggressive bladder cancer and that a further TURBT would need to be performed. Four weeks later, I underwent another TURBT. It turned out that my cancer had progressed quite rapidly from having had the last procedure and that my doctor would need to go away and discuss my case with his urological team. He assured me he would be in touch soon.

My options

It was around one week later that I received a phone call from my urologist. He explained that he had discussed “my case” with his team, and that I had two options available to me: BCG treatments – this is using the vaccine that is commonly administered to prevent TB (tuberculosis). The BCG bacteria causes inflammation of your bladder wall which in turn stimulates your immune system to kill cancer cells in the bladder.

My other option would be total removal of the bladder

I was further advised that BCG treatments wouldn’t necessarily “cure” my cancer. And that in the past, there had been shortages of the vaccine available for use by bladder cancer patients. I felt that he was telling me it would be “risky” to go ahead and opt for BCG treatments. I didn’t feel that I personally could deal with all the “uncertainty”. I just wanted rid of this “cancer”.

So right there and then, I made the decision to have my bladder removed. I was informed that this surgery would need to be performed by a “more experienced” surgeon at a specialist cancer hospital. He advised me that the procedure was known as a “Radical Cystectomy” (RC).

Meeting the surgeon

Everything happened quite quickly, and before I knew it, I was sitting in the professor/surgeon’s office. My husband and both of my parents had come, too. Along with the “Prof,” as he liked to be known, was a cancer nurse specialist. As you can imagine, the small office was quite crowded.

The “Prof” was sitting at his desk peering at his screen, examining my notes. “So,” he said, “you’re having a Radical Cystectomy?” “Erm, yes” I replied. He asked if I knew what this entailed. I told him that I had looked on the internet for information. “Right, so you know what’s gonna happen then?” “I think so,” I replied hesitantly.

He very quickly went on to explain that he would be removing my bladder, ureters, cervix, some lymph nodes, my appendix, oh, and the anterior wall of my vagina. I’d had a full hysterectomy some years previous; otherwise, I would have had to have a full hysterectomy as well. He went on to say that he would be using part of my small bowel to “make” the urinary diversion, and this was called an “ileal conduit”.

That was it. He then proceeded to give me a date for surgery.

Hindsight

Surgery went ahead on the scheduled date as planned.

It’s only now as I look back that I realize how unprepared I was. I was never made fully aware of how having an RC would impact me, especially from a sexual point of view. The removal of the anterior wall of the vagina is actually a “big deal”. It shortens the vagina considerably, therefore having a huge impact on any future sexual relationships.

At no point was it ever discussed that there could be possible other options for me, such as a “neobladder”. In fact, I’d never heard of a neobladder until I started conversing with other bladder cancer patients!

What I’ve learned

Ensure that you fully understand the procedure that you are about to undergo.

Do your own research beforehand and write down any questions or concerns that you may have in a little book. Take the book with you to your next appointment, and don’t leave until you have all your answers.

Ensure that you discuss “all” urinary diversion procedures before you make a decision that you feel is right for you.

I’m not saying that I’m unhappy with my urostomy and stoma, but I do feel that the information I was given left a lot to be desired.

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

  • Pepe528
    1 month ago

    bcg treatment …….pretty wild ………………. there are at least 6 nurses at my doctors office all of which were there to give me treatment —now for one i had too pull my pants down in front of all of them ,,, not at the same time –all gave me treatment that ranged to a total of 24– 4 sets of 6 because it kept coming back ,,, all i can say it was worth it –i can say this -0—i’am still here !!!!

  • Sarah Wallin moderator
    4 weeks ago

    Hi @pepe528, I admire your ability to keep the perspective when reflecting on your past BCG treatment.. Despite the uncomfortable moments and multiple sets you’ve endured… you are still here! And we are so happy that you are. Be well and take care, Sarah (BladderCancer.net Team Member)

  • David J
    5 months ago

    In my dealing with bladder cancer, I was told after 3 failed TURBT’s that the best course of action is to have my bladder removed. The surgeon first suggested a neo bladder which at first seemed great to me. However when I did my research it revealed that 70% of neo bladder patients have additional issues related to the neo bladder. 70% was a big enough number to make me reconsider. When I told my surgeon I didn’t want the neo bladder, he confided that he personally wouldn’t go with it either. I’m sure that procedure will get better and works great for some. I wanted a solution that wouldn’t have me back in the hospital, but where my quality of life would improve. Do your research!

  • dcote
    6 months ago

    Great article and advice. Luckily, I did get a second opinion. It turns out that my first urologist could only do one type of procedure and did not mention a neo bladder. After seeking more info and more options, I met with a urologist at the USC Keck Medicine Center. Here is was given 3 options. The first was urine re-direction which basically directs urine to an external bag. The second and third were neobladders. The first builds a bladder with a stomach stoma. However, there is a one way valve built in to prevent urine from leaking out until you are ready to let it out using a catheter. The second was similar. There is a neo bladder but it is connected to your own urethra. This would require some self catherization which I was not prepared to do using this route. I chose the neo bladder with the one way valve. I will have to cath through a stoma in my stomach. My surgery is April 15th. I am very happy that I did the research and did find out about options. Your post will help a lot of people. I wish you the best of health.

  • Shirley Norris moderator author
    6 months ago

    Hi there dcote, thanks for your feedback on my article. I’m so glad you found it helpful.
    But even happier to hear that you saught out a Urologist that could fully explain your options.

    Best of luck with your forthcoming surgery, we will be thinking of you.

    As Nina said, please do keep in touch and let us know how you are getting along.
    Kindest regards, Shirley – bladdercancer.net team

  • Nina moderator
    6 months ago

    Thank you so much for being willing to share your situation and thought process when it came to choosing treatment, dcote. I’m sure your comment will help people too. It’s really a universal piece of advice to cancer patients to be aware that their doc might only suggest their specialties. Best of luck and please keep letting us know how you’re getting along. – Nina, BladderCancer.net Team

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