4 Things to Consider Before Your Cystectomy

Male. Cystectomy, prostatectomy, neobladder, 42 lymph nodes – January 2013

I had my surgery almost 5 years ago and I’m still finding out things I should have asked about at the beginning. But there are some big buckets of things everyone should be aware of that may help manage the process.

#1 – Your mileage may vary

The first thing to know is that – as they say in the car commercials – your mileage may vary.

No two situations are the same. Some people have a wonderful, easy experience (well, as easy and wonderful as bladder cancer can be.) Others experience event after event on their way to a “normal” life. The biggest thing you can do for yourself is not overthink your situation. It is what it is. Someone else’s story is simply that. THEIR story. It’s not yours. Like my dad used to say – don’t go borrowing trouble. Deal with your issues as they present themselves to you and don’t project other peoples’ problems onto yourself. Trust me – there are enough people who will do that for you.

Deal with the facts of your situation and only those. Keep focused on your illness, your diagnosis and your doctor’s recommendations.

#2 – Understand a radical cystectomy is a big surgery

Especially if you have a neobladder installed as your diversion. For other types of diversions, I think the surgery is a bit simpler and may have fewer secondary issues.

That said, removing a bladder and hooking up the remaining plumbing is not something you get done on Monday and then you’re out doing an Ironman on Wednesday. Know it will take time to heal. Accept it and let it happen.

And maybe a subset of #2 is know you’ll have a bunch of belts and hoses coming out of you after the surgery. I had the bag of urine on the right side, a bag on the left side to drain fluid buildup in the abdomen that’s normal after surgery, a catheter to drain the neobladder and allow it to heal, and multiple IVs for pain meds, fluids, and one IV I swear was grape Hi-C but I couldn’t prove it.

Point being, this is an invasive surgery (I went in at 7:30 am and didn’t hit recovery until 5:30 pm and didn’t get to my room until 11:00 pm). My always honest daughter told me I looked like hell after the surgery. I always thought I looked like hell before the surgery so in my case it wasn’t that bad. Get mentally prepared for this. Get physically prepared for this. Relax and let the health professionals do their job. Listen to them and let yourself heal.

#3 – Talk through all the possible scenarios

The doctors won’t know everything before the surgery, so you need to talk through all the possible scenarios ahead of time.

CAT scans, x-rays and exams can only tell your doctor so much. Once you’re opened up for the surgery they have a direct view of the situation. And they may find cancer in the urethra, or the ureters or other areas (they found some in my prostate they didn’t know about before the surgery.) This can impact decisions you’ve made before the surgery. For me, my first choice for a diversion was a neobladder, but if my ureters or the urethra would have had cancer I would have ended up with a different diversion. You need to understand this is a game-time decision by your doctor and they can’t wake you from surgery to ask you questions. You need to talk it through with Doctor before you go under. Decide on Plan A, B and C, ahead of time so your surgical team knows what to do once they get inside. Make sure you’ve thought through the options and that way you won’t be surprised if your Plan A doesn’t happen and you wake up with Plan B on your side.

Funny story (now) – the first thing I did when I woke up from my surgery was feel my side for a bag to know if I had a neobladder or an external diversion. I felt a bag and freaked! Now, what they didn’t tell me (and I didn’t know to ask) was that regardless of the diversion you get an external bag for urine. I did get my neobladder but still needed the temporary bag during recovery but I didn’t know that. I had to wait about 6 hours before I talked with my surgeon and learned my urine bag was temporary. See…the more you know.

#4 – There are things to consider with every urinary diversion

Each diversion has its own pluses and minuses and individual “things to consider.” I only know the issues associated with neobladders. These include things like:

  • Urinary tract infections (BTW – you will always test positive for an infection if you have a neobladder – something about always having white blood cells in your urine with this type of diversion)
  • Scarring in the urethra that can cause blockages
  • Inability to empty the neobladder (hyper-continence)
  • Inability to NOT empty the neobladder (incontinence)
  • Mucus build up and mucus in the urine
  • Metabolic acidosis
  • Erectile dysfunction (this is for almost all cystectomies regardless of diversion…le sigh…)

Those are the biggies I would tell anyone going into this. Some of my fun little learnings also include:

  • No matter how many kegel exercises you do – when you sneeze or cough unexpectedly – you will pee a little. It will feel like a lot – but it never really is. It’s like that zit on your nose – you think it is HUGE, but it really isn’t
  • When you’re incontinent (and with a neobladder for time you WILL be) the diapers and pads are invisible. You think everyone can tell you’re wearing them, but they can’t. Just go with it. And they hold a lot of liquid – no one will know if you leak
  • It will be a bit embarrassing to buy pads and diapers. I handled it by always asking a friend to go with me and when I checked out I just looked at the cashier and pointed to my friend and smiled when they rang them up. My friend wasn’t happy, but I wasn’t embarrassed

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