Deciding Between BCG and a Radical Cystectomy

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In an interview with BladderCancer.net, Shirley describes a phone call with her doctor during which he explained the two choices she had to treat her bladder cancer: BCG treatments or bladder removal surgery (a radical cystectomy). He explained the pros and cons of each option to allow Shirley to make an informed decision. Watch along to hear her story and how she made her choice.

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munch Member

Go for cystectomy every time, better than BCG burn and soreness
1. Sarah Wallin Community Admin
 
 <inline-mention user-id="2066556" username="munch" class="bp-suggestions-mention"/> , it's important to remember that everyone is different, so the best treatment route for one person may not be the same for someone else. Did you opt for the cystectomy? How did it go for you? -Sarah (BladderCancer.net Team Member)
munch Member

Yes everyone is different, but research is showing some interesting ideas.. I had BCG x 12, TURBT, radiotherapy, all to no avail. Had i had a cystectomy straightaway, I would NOT have genital skin burn, or damaged bowel. These problem have caused a lot of pain, digestion problems limiting what I can eat, sexual activity NIL, etc etc. I am 18 yrs down the road, but quality of life due to the treatment,NOT the stoma, has been poor I can only speak from my point of view.
1. Sarah Wallin Community Admin
 
 <inline-mention user-id="2066556" username="munch" class="bp-suggestions-mention"/> That does sound like a lot you've been though...not only the treatments themselves but the lasting side effects too. It can be really tough to deal with all of those things that you listed. Really appreciate you sharing your point of view on this. Many are afraid of getting a cystectomy, but hearing this might make them feel better about deciding to. How did you adjust to having the stoma? Did it get easier as time went by? -Sarah (BladderCancer.net Team Member)
munch Member

No real problems with the stoma, you get used to it, I day better the cancer out than in!! My advice would be to ask for tips on managing, do not just put up with it.... there will be an answer to any problem you are having
1. Sarah Wallin Community Admin
 
 <inline-mention user-id="2066556" username="munch" class="bp-suggestions-mention"/> , this is great advice! Feeling comfortable with managing things day to day is so important. I'm glad that you've gotten used to your stoma, and that you feel positively about your decision. If you ever feel like providing some insight to others, we do have members who ask about life with a pouch fairly often. Here is one (<a href='https://bladdercancer.net/q-and-a/neobladder-pouch' target='_blank'>https://bladdercancer.net/q-and-a/neobladder-pouch/</a>). -Sarah (BladderCancer.net Team Member)
raymond Member

I had cystsectomy from get go 9 years ago. Had som leakage problems but once got the right pouch, had no more problems. I think cystecyomy is way to go. Still play golf! Square dance and I’m 75 years old.
1. raymond Member
 
 Yes we Square dance as a couple.
2. Sarah Wallin Community Admin
 
 <inline-mention user-id="2076870" username="raymond" class="bp-suggestions-mention"/> , that must be delightful! Thank you for sharing with me. -Sarah (BladderCancer.net Team Member)
nancycccslp Member

This was surprisingly unhelpful. Stage? What had been tried over the previous 12 months that “stole” her life?
1. Sarah Wallin Community Admin
 
 Hi , these are great questions about things that the video does not cover. Shirley (from the video), is a writer for us and has been very open in sharing the details in her written articles. I'm sharing with you this one (https://bladdercancer.net/living/how-radical-cystectomy/) she talks about getting the results of her TURBT, which were Grade 3 (highly aggressive), Stage 1. Hope this helps you wherever you are at in your journey! We are here to support you if there is anything else you would like to discuss or learn about. -Sarah (BladderCancer.net Team Member)
carolefalk Member

I have bladder cancer.I went through bcg treatments twice.It didn't work.I get byopsies every 3 month's.I refuse to lose my bladder.It suck's,I also have MS.My Dr. say's the ms is attacking the wall of my bladder.I've had cancer twicw in 3 years.
carol-szemplinski Member

Started my BCG treatments,4 weekd ago 2 more to go,it sound like i sjouldve gotten my bladder taken out instead,im praying these treatments work,im scared to death,ive gotten sick a week ago with sepsis,from UTI,feeling bad,someone give me some pointers..
1. Sarah Wallin Community Admin
 
 Hi <inline-mention user-id="2065161" username="carol-szemplinski" class="bp-suggestions-mention"/> , I hope the BCG treatments work for you. Congrats on having only 2 left! Let us know how you're feeling after your next one. Bladder removal is not always an option for everyone, so I do encourage you to speak with your doctor if you're wondering about that option. Sorry to hear about your recent UTI/sepsis! That is a very serious and scary thing to be dealing with. Has your doctor advised what to do? We do have an article about a scary UTI experience that led to sepsis (<a href='https://bladdercancer.net/living/infection-sepsis' target='_blank'>https://bladdercancer.net/living/infection-sepsis/</a>). Keep in touch with how you are. -Sarah (BladderCancer.net Team Member)
counselingyogi Member

Thank you for sharing.
1. Sarah Wallin Community Admin
 
 Hi <inline-mention user-id="2065013" username="counselingyogi" class="bp-suggestions-mention"/> , thank you for your comment. I am glad you found this video helpful. Are you currently deciding between treatments? Hope you are well amidst all of the current events. -Sarah (BladderCancer.net Team Member)
dalej Member

I decided on a radical cystectomy. For me I think it was a good decision. It's been 17 years and I can honestly say I've had no problems at all. Once I got used to wearing an appliance it became a normal part of my life. 
1. Laura MacKenzie Member
 
 <inline-mention username="dalej" user-id="2077278"/> thank you so much for the positive vibes and the great testament to life after a radical cystectomy. Hope you continue to enjoy a great life. Wishing you well. Laura, Moderator, <a href='https://bladdercancer.net' target='_blank'>BladderCancer.net</a>
2. Linda Urbanski Member
 
 @dalej - thank you for this comment. I am 8 years post RC this month and feel the same way. I did not have difficulty accepting the bag at all and was fortunate in that way. I think those who share positives such as this make it easier for those faced with a decision to make that is difficult at times. My best to you and congrats on 17 years !! Linda Urbanski ( moderator, <a href='https://bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)