Husband has MIBC: Respecting his choices

Hello @jurunado. My husband was diagnosed with a highly aggressive muscle invasive bladder cancer in 2019. He ended up wanting a cure after 3 years of repeated TURBT tumor removals post chemo and BCG treatments. He has a neobladder because he did not want an ostomy. He is happy with his decision but was quite adamant about not losing his bladder when this all started. All treatment has been at Mayo Clinic in Rochester MN. I recommend you seek out a referral for a large cancer center specializing in Urological cancer so that the best and newest treatments are provided to you. There are more chemo drugs approved now than when my husband was found to be a BCG failure. There seems to be more evolution toward doing everything to maintain the bladder now than 5 years ago. The neobladder surgery was a huge deal and unfortunately he had many complications afterward. It was all worth it to be cancer free today in his opinion. Your husband may change his view, and a lot depends on his type of cancer and how invasive it is. I assume there has been a biopsy done? Was it muscle invasive?

@sepdvm Hi Sue.. thanks so much for your reply.. yes he had a biopsy and it is invasive

Ask for EVP. Read about this patient and advocate for all of us: https://treffertinnovations.com/blog.html.

Hello! I was diagnosed with an aggressive MIBC two years ago (at age 54) My doctors (and second opinion) recommended chemo then bladder removal. It was my best chance at beating the cancer. I now have a neobladder but researched all the diversion options. Thankfully I was healthy enough for the neobladder though some are not. I'd suggest that he keep an open mind and take a look at the BCAN website. There is helpful information on the site and survivors he can talk to just to get a feel for the other side of bladder removal. I understand his concerns and it isn't perfect but he may be surprised at how others have adapted to their diversion choice. Biking, hiking, all the things!! I'm very pleased with mine! Good luck to both you and your husband!

@jowilliams1 YOU, are a beacon of hope. I wish you continued well wishes. Of course I am sorry you went through this, but to hear feel your optimism through words is very inspiring - thank you.

@michzn We think we can’t do these things, but sometimes we can. I just spent 8 days with a catherter ( my third and worst TURBT in 5 months, including a trip to the ER 5 hours after surgery) and thought I would absolutely loose my mine and yes often I broke down feeling sorry for myself. But, hey here I am on the other side of it now feeling thankfully pretty darn good.

@jurunado My husband was diagnosed with MIBC in January of 2025. His Oncology doctor and surgeon told him to have 3 months of chemotherapy, Gemcitabine and Cisplatin. I was with him as he received the chemo and he did very well. The doctor gave him anti nausea medication and he was still able to work at his desk job…he is an accountant. He was 64 at the time. After the chemo ended in April, he had a Radical Cystectomy at the end of May 2025. The surgeon took his bladder, prostate, etc out and checked all his lymph nodes…thank God none had cancer. The next day he was up and walking around the hospital. He was happy that the surgery was over! I was with him in the hospital for 7 days. The nurses taught him how to attach a pouch to the stoma….a small piece on intestine below his belly button. It was very easy. The surgeon did a fantastic job. The pouch/little bag , has never fallen off and it is very easy to learn. He chose this diversion because he didn’t want to use a catheter at night with a neobladder. After 7 days in the hospital….he was able to go up and down the stairs…take walks with me a few times a day….he was feeling so much better and relieved that it was all done with. My husband worked from home for a couple of months…he got bored …and went back to the office.
With Muscle Invasive Bladder Cancer it is strongly advised to get a radical Cystectomy because the cancer spreads into the fatty tissue and then spreads to organs. Bladder Cancer is Relentless. It needs to be stopped by radical surgery. I tell you this because the operation is not as bad as we thought. My husband only needed Tylenol for the pain …the first few days after surgery.
He is doing everything he did before the surgery…bike rides…jogs, walks, hikes, swims, etc. The surgery was a blessing in that it saved his life.
He goes every 6 months for a cat scan with contrast and MRI. So far, praise God he is cancer free…No Evidence of Disease(NED) and we are so grateful.
He had robotic surgery and it was amazing just how the surgeons have perfected the little stoma with the pouch attached. No one can see it …but my husband is quite proud that he was able to do it. There are bladder cancer survivors that have a group….they go swimming in the ocean…I live close to the beach…and actually show off their diversions…some have a stoma with a pouch…or a neobladder….indiana pouch….they are very grateful for this diversion and choose to show it off and go swimming …..once a week in the summer.
Please talk to your husband about the radical Cystectomy….the cancer has not left the bladder and that is a blessing ….he will qualify for the surgery. Many don’t qualify and it is not a good outcome.
Please contact me…message me through this platform if you need to talk or have any questions. God bless your husband and I pray for total and complete healing X Rose

@jurunado, it is really tough to respect and accept his treatment choices when they are not the recommendations. How are YOU doing?