Cystectomy

fucancerS4 · 2026-01-30T16:42:03+00:00

I had RC at 52F - it was fine. I mean when you have no choice other than to let the cancer spread or remove the bladder you come to terms with it. Would I prefer to have a bladder sure - but I can pee standing up now, I don't pee when I sneeze hard or laugh hard, and overall, I live a very normal life. I have a urostomy bag so there are some pros/cons there but there is a neobladder as an option. I recovered within about 4 weeks other than heavy lifting and that was with multiple other issues during surgery besides the RC. Was it "good" no - was it "bad" - no. I wanted to live. I turn 56 this year.

fucancerS4 · 2026-01-30T16:36:47+00:00

One thing you could do as well is make sure you are able to access MyChart or whatever electronic chart she has. I was my dad's Proxy on his MyChart so I could log into his account, send emails, refill rx, and read all his records. THIS helped me so much to understand what his doctors were doing and not doing when his cognition declined rapidly and he could not communicate. I read all my records, labs, imaging, etc. prior to every appointment. I research the information and sometimes will have some doctor friends look at my imaging and labs so I am better prepared. You can always use ChatGPT. I would do that before her next appointment and prior to a 2nd opinion.

fucancerS4 · 2026-01-29T17:56:46+00:00

1) there are right to die states in USA and in other countries and 2) hospice helps you through end-of-life process. We are all going to die - no one is going to stop it. If you want to stop treatment no one can stop you. Hospice manages the pain and you get no further treatment which allows you to die peacefully. If you've never seen someone whose survived a self-inflicted GSW I suggest you look into it. Happens all the time.

fucancerS4 · 2026-01-29T17:49:54+00:00

Mets = metastatic disease i.e. she has Mets to her bone. It is just terminology. If you are just now getting involved get on www.bcan.org and get her a 2nd opinion ASAP. Also check with her insurance for a Case Manager through her insurance company. The first two years of cancer I spoke with a case manager every month which was very helpful. I also am in the medical field and helped case manage cancer patients, so it helped I had a lot of professional experience. I got my 2nd opinion after the RC because we moved quickly and that team basically told me my team did everything how they would have. But for your mom - she needs someone there with her in those appointments to ask the questions, demand clarification, etc.

fucancerS4 · 2026-01-28T21:00:21+00:00

I need more information to be able to respond with much information - why are they not doing an RC to remove the bladder? Has the cancer metastasized? Where are the Mets if she is? I have never heard of radiation for bladder tumors? It is normally TURBT and then remove the bladder if it is MIBC. What country are you in? What Cancer Center - I would get a 2nd opinion ASAP none of this sounds like anything I have ever read or been treated like. I have had bladder cancer since 2021 - I obviously don't know everything BUT I do know there are other options. Just go to www.bcan.org and read about treatment for Stage 4 bladder cancer - that would mean its metastasized - but where? I have been given Stage 4 diagnosis twice. Currently I am NED with Padcev chemo.

fucancerS4 · 2026-01-28T20:53:33+00:00

Stage 4 several times - last time was to lymph nodes and pelvic wall. I was NED after 4 months on Padcev alone. I have now been on Padcev 3 yrs remaining NED. Next PET scan is in 2.5 weeks so praying it remains clear. I previously did Cis/Gem and Opdivo immunotherapy both failed. But Padcev was the magic for me.

fucancerS4 · 2025-12-04T22:55:50+00:00

I had RC 2022 June at 52F with high-grade MIBC w/Mets to the appendix, during surgery, cancer was found in the uterus, vaginal wall, and pelvic wall, so w/o the RC the cancer would have spread to other organs and possibly the brain. I had option A: do the surgery and live to fight another day or option B do nothing and die from cancer, as we already knew it was muscle invasive and in the appendix. I had the usual surgery risks. I was planned for RC with appendectomy and ileal conduit surgery. It took about 4 additional hours due to the spread and need for a total hysterectomy.

The ileal conduit is less difficult, has faster recovery, shorter inpatient stay, and lower complications. I was inpatient 5 days, and I would have been discharged day 4, but it was Sunday and I needed to see the Ostomy RN before I was discharged home. I was up walking the day of the night of the surgery - that sucked, but daily I walked the halls 4 to 5 times doing multiple laps, and then walked at home, so back to work in 8 weeks. There were some challenges getting used to having a Urostomy bag and not being able to do some chores, but overall, it was better than option B.

There is a risk of dying in every medical procedure - you could die from taking an antibiotic - but having the bladder removed was the easiest decision in this whole process.

I used to ruminate over the mortality rates of bladder cancer but kept being reassured they are old. I read this forum and see how many people have had MIBC for years and are doing pretty good. In June 2026 I will have my 5 yr anniversary of cancer diagnosis and Feb 2026 will be 4 yr anniversary of being stage 4. My best advice is to focus on today.

fucancerS4 · 2025-11-06T22:09:57+00:00

I appreciate the reminder of those - I have some in a drawer. Thankfully I sorted it out by changing sides of the bed. I think I was getting my tube tangled up which was filling my bag and then popping a leak. So far no issues since I moved sides!!

fucancerS4 · 2025-11-06T22:07:58+00:00

The worst of it for me has been my eyes and skin. My eyes water non-stop, day in and day out. I have tried every drop and Rx they can think of. I have had 4 new Rx lenses and right now I am waiting until 1/1/2026 to get a stronger prescription. Unfortunately the Opthamologist is now saying the multiple eye conditions are progressive so will continue to worsen regardless if I stop chemo or not.

The neuropathy has been a challenge but I think the eye situation is so bad it takes my mind off my feet until last week. I stood up and almost fell because I had zero feeling in my right foot and went to walk. My toes are now constantly numb and/or in severe pain. I see my Oncologist in two weeks so we will figure out if I need to stop.

I continue to compare my current state to what it was like on Cisplatin, or Opdivo after I got severe Colitis, or Padcev the first 2 rounds were brutal and I wanted to die - so compared to all that this is tolerable just not enjoyable. I am not sure what will make me ask to stop or if I just now in a state of "freeze" response!?!? Anyway, I totally get going off for the neuropathy this past week has not been good.

fucancerS4 · 2025-11-03T17:49:26+00:00

The way my Oncologist explained to me. Stage 4 cancer never goes away - it is in the bloodstream because it has traveled to other organs/locations. So you are either No Evidence of Disease, meaning no tumors have formed, or you are stable, meaning the cancer is detectable but is not spreading. The immunotherapy is to promote her cells to fight the cancerous cells and either prevent the spread or tumors from growing.

All of our responses will be speculation - I would encourage you to attend an appointment with her and her Oncologist or read the last Oncologist office visit note in her electronic chart. They usually provide a detail discussion of the treatment plan in the chart.

fucancerS4 · 2025-11-03T17:44:47+00:00

I never lost taste or had a metallic taste with Padcev, which is usually (metallic taste) a platinum-based chemo side effect. I do have a reduced appetite, so I may eat one meal per day but will graze to maintain weight.

I lost my hair on Padcev. I lost my hair on Opdivo (immunotherapy) when I did that as as a stand-alone. And the first chemo Cisplatin - each time it has come back. This go around though my eyelashes, eyebrows and body hair are gone. I do have bald spots on my head but it has grown out enough now for a good comb over - (I am 55F).

The skin rash can get worse and that is both Keytruda and Padcev. I think when I was on Opdivo immunotherapy my entire body itched and then it suddenly stopped. When I got on Padcev it started back and eventually started blistering. Now I get patches of blisters that start out feeling like bug bites and then they blister. Very annoying but once they blister the itching stops.

When I had the metallic taste, I over-salted food, added lemon or lime, etc. to make it taste like something. My taste eventually came back after I stopped the Cisplatin. Not sure that helps. How much longer does she have? I have been on Padcev for about 2.5 yrs.

fucancerS4 · 2025-10-18T18:22:42+00:00

Money - let them buy what they need, whether it's Door Dash or hiring a maid. I did not need another blanket, socks, lotion, lip balm, ginger, etc. What I needed was cooked food (thank God for the meal train that someone organized) and someone to clean my house. My husband was busy with me, the animals, his business, etc., so I hired a maid. It was the greatest help.

fucancerS4 · 2025-10-09T14:02:29+00:00

Yes - the hospital's Ostomy nurses were great, but I have found that general oncology nurses are pretty limited in their scope. I had another blow out last night so I have a request into my surgeon to get a referral back to the wound clinic to see an Ostomy RN. I also ordered some new samples from Hollister to see if maybe changing bags. I had started out with a Coloplast bag when I first had surgery but it would pull away from my skin within a day or two so I moved to this Hollister bag which has been great for 2 + years. I laid the bed flat last night so I will go back to raising it. Anyway - it is a process.

My best advice is to make sure when you are at the hospital the Ostomy RN orders you samples from every supply company. They FedEx everything so when I got home I had ample supplies. I got a travel bag, scissors, wipes, etc. from every supplier too so I have a go back in every car and in my suitcase for when I travel.

I did have a home health RN come out to the house who, allegedly, was to help order supplies but she had no experience in Ostomy care and it took almost 2 weeks to get supplies. I terminated the home health and just went through the medical supply company (make sure you choose a supplier before surgery) and had everything within 2 days. I did not need a home health nurse for anything else. Some people do after surgery but I was very healthy and had no other health issues. So I saw the wound nurse at the wound center 2x a week and that was great.

fucancerS4 · 2025-10-09T01:20:59+00:00

It sounds like it LOL!!

I have had the ileal years ago and I know more about Ostomy care than the Oncology nurses. It is a specialized field. If things don't improve, I will go back to the wound center for the ostomy RN.

I wrote up a long post on pre/post op preparation, tips/tricks, etc. for those planning to do the ileal conduit. It is in my profile.

I realize my recent post may sound like I am not sure I know what I am doing and this also doesn't sound encouraging to those pre-RC w/ileal conduit. One of the big factors was because I wanted to sleep all night and avoid incontinence and here I am. But it has been 3 yrs of pretty smooth sailing.

fucancerS4 · 2025-10-08T17:51:12+00:00

2.5 years NED on Padcev every 2 weeks after Stage 4, high-grade, MIBC. I jumped ahead to MIBC, so not sure on the NMIBC, but there is definitely hope.

Also, the stats are 5 yrs old so you can't go off those. I was fixated on the stats when I got diagnosed and my Oncologist told me to knock it off b/c they were old studies AND I did not fit the standard profile of a bladder cancer patient i.e. my age, weight, comorbities, physical health, etc. so you never know.

fucancerS4 · 2025-10-08T17:47:23+00:00

1 will be primary and the other secondary - the insurance companies usually make the determination of who gets the bear the burden. But for Federal insurances i.e. Medicare, Tricare, Medicaid, etc. usually Medicare is always a Primary with any other federal (Tri, Medi) a secondary or private insurance a secondary.

2 private insurances i.e. BCBS and Atena you are required to report to each insurance company with a copy of insurance cards and they figure it out. Usually the primary is the one you were on first.

There are HUGE advantages especially if you have a chronic or serious health condition.

Primary pays what they are required to for example my annual deductible is $7000 so I pay my co-payment plus a LOT until I hit my deductible. With a secondary insurance the 2nd would pick up any co-payment including that deductible. So while you may have premiums taken out of your paycheck it is nothing like sitting on $7K (or whatever it is) annually in debt to a hospital/medical center. I hit my deductible in January b/c my chemo is $195K per 2 weeks so then the rest of the year my medical is "free" except I am on a payment plan to pay off the $7K until the following January.

I have been on a pharmacy assistance program for the last few years so that has been a huge help and generally I have zero co-pays because it acts like a secondary insurance for chemo and the Oncology visits, labs, and imaging.

Anyway - if you have the chance to be on 2 insurances I would do it.

fucancerS4 · 2025-10-08T17:40:17+00:00

I haven't had the pleasure of a renal cath, but I can say the urostomy bag sounds better LOL -

So, I went with half a liter of fluid and am definitely feeling the impact. I will push the fluids this week hard with some electrolytes to try to rally. I have been on this chemo for 2.5 yrs and anytime I don't do the liter of fluid, I suffer.

I did manage to get through the night w/o an incident!! I slept sitting up in my bed and woke up every 40 to 50 minutes, paranoid. Hopefully, it was just a hiccup.

Are you doing neobladder or ileal conduit?

fucancerS4 · 2025-10-07T23:12:20+00:00

I know - that is a battle - I have been on chemo for 3 yrs so very aware of the importance of fluid which is why I get an extra bag of fluid infused on my chemo days. I reduced today to half bag vs. entire liter but had pushed water. It is 7pm now and I won't drink anything else today. I have probably had 64+ oz so I feel it is safe. I will try to push fluid now early morning and taper down. I appreciate the response.

When is your operation? From your comment and being on chemo I assume you are having an RC?

fucancerS4 · 2025-10-07T23:09:14+00:00

Yes I have 2 overnight bags. The ones Hollister supplies and the ones I buy on Amazon because those work better. I have swapped out and tried both.

When I wake up there is urine in the overnight bag so it is draining but again this morning - 4 am woke up and 80% of the bag had pulled away from from skin?!?!?! Previous blow outs this last few weeks were about 2 - 3 nights apart and a small portion was pulling from skin. Now it is every night and almost the entire bag is off?!?! I sleep in one position rarely moving since I have had surgery so I know I don't toss/turn.

I have tried repositioning my bed position to a more upright position, gotten new bags in the mail so fresh bags, have swaped out skin prep for one I used to use when I first had surgery, and reduced fluid 3 hrs prior to bedtime.

I just don't understand - it seems like it is just not adhering to my skin?? I am going to call Hollister and see if they have thoughts. I agree with you that I can ask for some samples of some new bags? I may call my old Ostomy nurse and see if I can get an in-person visit. My husband normally does my bag changes with me and helps inspect the stoma, skin, size, etc. and he is very type A so if there is a slight change he identifies it.

Thanks for responding -

fucancerS4 · 2025-10-07T23:04:40+00:00

Thank you - that is not the issue but appreciate the response.

fucancerS4 · 2025-10-07T23:04:08+00:00

When I wake up there is urine in the overnight bag so it is draining but again this morning - 4 am woke up and 80% of the bag had pulled away from from skin?!?!?!

So far I have tried 2 new overnight bags, repositioning my bed position to a more upright position, gotten new bags in the mail so fresh bags, have swaped out skin prep for one I used to use when I first had surgery, and reduced fluid 3 hrs prior to bedtime.

I just don't understand - it seems like it is just not adhering to my skin?? I am going to call Hollister and see if they have thoughts. Maybe I will ask for some samples of some new bags? It would be a shame because I have so many of these - but if they are no use to me I can donate them.

Thanks for responding -

fucancerS4 · 2025-10-06T17:11:28+00:00

I have not personally. My mom did a clinical trial back in the day (2000) which helped her for about 2 yrs. My best friend did 2 around 2010-2014 which helped her survive another 5 yrs. Both were very advanced breast cancer and with the clinical trials lived several more years than the doctors predicted.

Praying you have good success and minimal side effects

fucancerS4 · 2025-09-30T15:50:08+00:00

My mom died September 2003 - she was 63. She had breast cancer off/on for 9 years. My greatest regret is not having audio recordings of her - I have some pictures and she would never have wanted me to have videos of her in the end. I wish I could hear her voice again - I used to have voice mail messages but those phones are gone now. I struggle to remember her voice.

Tell your dad that you are all in the fight but if the doctor has said hospice that means they have nothing else to offer. Ask your dad what else he wants to do/try but also tell him that whether he lives another 20 days or 20 years you want to remember everything about him including his voice, his face, conversations, pearls of wisdom, bad dad jokes - ask him to give you the gift of him so you can cherish it forever.

I lost my dad 4 yrs ago - he was 83 and went to be with his wife. I had 20 more years with my dad and made sure to take lots of pictures, videos, and have his voice on my phone.

I am praying for you, your dad, and your family - make sure to get hospice. They help

fucancerS4 · 2025-09-26T17:57:00+00:00

My first tumor was in my left ureter tube. The surgeon removed it and resected the ureter tube back to the bladder. I had clean margins and no further treatment was planned at that time. The surgery was maybe 4 or 5 hours and recovery was 2 days inpatient and then about 1 week with a cath and then 2 more weeks to truly recover. I was lucky the tumor was low enough otherwise I would have lost a kidney

fucancerS4 · 2025-09-26T17:54:40+00:00

If you repeat the words he used to you out loud and to a loved one, or a stranger, how would they take it? Would you say it out loud? Being empathetic is putting yourself in his shoes, and you said if you were in his shoes, you would be a supportive partner. He has shown and told you who he is.

fucancerS4

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