[SJay]

Kelly

Hopefully they checked his white blood cell count to see if there is an infection.

[SJay]

I found the best thing for me was to keep doing the things I like doing, just doing them a bit less, a bit more slowly and with more breaks. Get some exercise even if it is just walking a few blocks. Staying active in spite of any tiredness or discomfort helps you to keep a positive attitude.

[SJay]

There is a treasure trove of patient stories in the Inspirational Survivor Stories forum here. They mostly describe one person’s journey through the system, starting from having no knowledge about any of it. The difficulties they encountered could indicate future research directions. I think most of the time there is little awareness of the research that occurred to get to the place where they start their story.

SJay

[SJay]

It’s a bit dated now as it was published in 2015, but the Bladder Cancer White Paper on Standards of Care In Canada is a good starting point to understand the standards of care.  See  https://bladdercancercanada.org/en/patient-resources/

Surveillance of NMIBC is one of the sections in the paper and it discusses when to do followup exams.

SJay

 

[SJay]

Hi Broadmeadow

A hospital is indeed a great place to get rid of whatever modesty you have left. Health care providers have seen it all way to many times to have any effect, so best to just go with the flow.

Not sure where you had your cystoscopy, but mine were all done at Vancouver General with just the doctor present. In my experience nurses don’t just hang around where they aren’t needed, so maybe there was something else happening, such as training. If it makes you uncomfortable you can ask why they are there, but in a teaching hospital there are often onlookers.

Next time you have a cystoscopy or TURB let the doctor know beforehand that you need some pain management. Don’t let them dismiss it. You really need to advocate for yourself in health care.

btw for clarity – If you are referring to an enlarged prostate, that is, benign hyperplasia, the abbreviation would be BHP.

Cheers

SJay

[SJay]

Hi Petra

The problem was that I didn’t have sensation in my legs fully back, so no walking. Sorry, but I don’t remember if the catheter was in or out. It was 7 years ago! They probably left it in as I wasn’t mobile. In any case, the anesthesia eventually wore off and I went home without further complications. No idea why this occurred. There are potential complications with either epidural or general, but either is usually just fine.

Cheers
SJay

[SJay]

My experience with an epidural for a TURB was that the spinal anesthetic they gave me didn’t wear off after an hour like it should. I was still partly frozen when the perioperative suite closed down for the day so they sent me up to a ward. Nine hours later I got to go home. I have no idea what the anesthetist did to me. Every procedure seems to have a chance of going a bit sideways.

I’m not sure why the nurse thought it would cause a longer stay under normal conditions. Maybe check with your urologist.

Cheers
SJay

[SJay]

Hi Chuck

This is mostly a copy of a previous post:

I had my RC April 2016 at age 64, preceded by 3 months of chemo. The doctor gave me a choice between ileal conduit and neobladder and didn’t push for any preferred procedure. I chose a neobladder and am reasonably satisfied so far. If you browse around (search with keyword ‘neobladder’) on this site you’ll find quite a few discussions on which option to choose. Most seem satisfied with what they have chosen. My decision was based on my lifestyle and not wanting to deal with the external ostomy appliance and discounted temporary issues such as training time for the neobladder or the length of the surgery. I’m here for the long haul. I have gone swimming, hiked, gone on week long ocean kayak and camping trips, travelled overseas and been skiing, so the neobladder isn’t preventing me from doing anything.

I rarely use a catheter. Maybe once a year. It isn’t a big deal once you have done it a couple of times.

I think the big advantage of an ileal conduit is that you can connect the big bag and have a full nights sleep. I get up 1-2 times each night and occasionally have a nighttime leakage.

Cheers
Sjay

[SJay]

Hi Abarro

The ostomy nurse will show you how to self-catheterise after having the foley catheter removed a couple of weeks after your surgery. They put the foley in during the surgery. As mentioned by Donald it is easy and painless. I seem to need to do it about once a year, but everybody is different. It is really not a big deal once you have done it a few times. I had my RC and a neobladder 5 years ago at age 65.

Cheers
Sjay

[SJay]

If you think it might be a dietary issue talk to a Registered Dietician familiar with this area. There is a massive amount of uneducated opinion out there when it comes to diet so cross check all advice. (No disrespect meant for those who have posted advice 😉

[SJay]

Hi Lesley

I am so sorry to hear about your husband. It must be very difficult for you. I had my wife to give me support as well as my sisters and children and that made a difference. If you have someone close to you that you can talk to about this and come with you to doctor’s appointments it would be a great help to you.

I had neoadjuvant chemo with Cisplatin and Gemcitabine before surgery. The pathologist’s report after surgery showed no cancer cells in any of the tissues, so the chemo worked very well for me. During chemo my main issue was just being tired, but I still tried to get out to do things. There were a number of other side effects but overall tolerated the chemo fairly well. Oddly I gained weight, apparently due to the anti-nausea steroidal dexamethasone.

Stay positive and keep doing the things that make you happy and you can get through this.

Stephen

[SJay]

Hi bigtea

A good source for how others have dealt with this is in the Inspirational Survivor Stories section. They are typically straightforward descriptions of people’s physical and emotional journeys through their cancer story arc and aren’t whitewashed, so they are useful. Also, just looking through people’s comments in the Forum gets you a lot of insight in how people deal with this. Everyone is different, but there will be a lot that is similar to your own experience. I think everyone on the forum is open to answering specific questions as well.

Hoping all goes well for you.
Cheers
Stephen

[SJay]

Hi Kim

I think I’m a bit like your husband. When I got the bad news, I didn’t feel afraid and could accept that things were now different. I felt more concerned and wanted to figure out how best to deal with the situation. I didn’t think it was immediately life threatening as it was non-muscle-invasive and treatable. If it got out of hand, bladder removal was a backstop. Eventually, the bladder did come out and I am now five years clear and all is going well.

The thing that would bother me most is when others projected their fears onto me. Asking me how I was doing with a concerned look on their face and some hand-wringing thrown in was not my favourite thing, nor was someone saying “let me do that for you.” Keeping things as close to normal as possible while being supportive and openly talking about what was going on were helpful. For example, I drove myself to BCG treatments because that was “normal.” If my wife was fearful about a delayed BCG treatment it wasn’t helpful. If she was irritated because it was delayed for non-medical reasons, that was ok. Support to keep strong is the goal.

Hope all goes well for you.
Cheers
Stephen

[SJay]

One more thought.
I don’t know who you talked to at the clinic, but I would recommend you ask to talk to an ostomy nurse. They have loads of practical experience. In my case it was an ostomy nurse who removed my foley and gave me all my instructions on what to do next. I also consulted one when deciding between RC and ID.

Sjay

[SJay]

Hi kjc

I have a neobladder, but I understand women and men can have different experiences with a neobladder. Hopefully the situation you have is temporary. One thing that my urologist did was a post-op cystoscopy ( I can’t remember how long after the surgery but it wasn’t right away). He put the camera at the sphincter in the pelvic floor and asked me to open and close. I could see it operate. Perhaps you could get your doctor to do the same if things don’t improve soon so you know if it is working as expected.

Another thought is that if you are doing kegels all day long the muscles in your pelvic floor might just be exhausted and can’t keep the sphincter closed. Give them a rest and see if things improve. Just do the kegels a couple of times a day. Ten reps and hold for 10 seconds.

Good luck
Sjay

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