Uro-oncologist protocols post RC

[Greg]

A fellow BC survivor and I were sharing coffee today and discussing, among other things, protocols following an RC with a neo-bladder. Obviously there are some differences depending on the diversion, but it appears there are significant differences from centre to centre and doctor to doctor as well. We’d like to do a comparison to allow future patients to ask the right questions when getting comfortable with an RC that is approaching. Please respond to the following questions and feel free to add info that is relevant. Please do not hijack the post and take it on a tangent:

1. How long did you have a urethral Foley catheter inserted? For me it was seven weeks.
2. How long did you have a suprapubic (Malecot) catheter? For me, three weeks.
3. How often were you trained to irrigate the catheters? For me it was every four hours day and night as long as they were inserted.
4. When was your first post-op appointment with your surgeon? For me it was three weeks.
5. If you had chemo following surgery, how long between surgery and the start of chemo?
6. When was your first CT scan post op? For me it was about three months as I recall.
7. What post op instructions were you sent home with to help in your recovery? For me, next to nothing.
8. What complications were you told to expect or at least be aware of? For me, none (but I had some!).
9. If you had complications, what were they? For me, constipation and infection. Nighttime incontinence was not exactly a complication, but certainly was present for a long time and I did know about that.

Feel free to add to the list. This is not a complaint post. It is to try to educate and understand.

Greg

[Anonymous]

Hi Greg,

In Mike’s case this is what he had.

1. How long did you have a urethral Foley catheter inserted? total 8 weeks
2. How long did you have a suprapubic (Malecot) catheter? Mike did not have Malecot cathether – he had Jackson-Pratt (JP) Drains instead – one was taken out at 2 weeks and the other at 3 weeks.
3. How often were you trained to irrigate the catheters? For Mike it was every four hours during the day and we did it during the night because he had a lot of mucous while the Foley was in.
4. When was your first post-op appointment with your surgeon? 4 weeks after discharge.
5. If you had chemo following surgery, how long between surgery and the start of chemo? No chemo
6. When was your first CT scan post op? 3 months
7. What post op instructions were you sent home with to help in your recovery? A booklet on RCs with pretty thorough instructions from how to care for your cathether, to wound care, to exercises, diet, medication.
8. What complications were you told to expect or at least be aware of? The booklet had a section to “Call your Surgeon if you have any of the following…. it listed several things to watch for. I can always add the list if anyone wants it.
9. If you had complications, what were they? Mike – had to go to short term rehab before they would let him leave the hospital after surgery because he was so weak from not eating for 11 days (sick from pain meds. – he lost 50 lbs) Then, 2 major infections – 1st one at about 2 months after surgery e-coli that got into blood, liver, kidneys, etc (hospitalized for almost 2 weeks – then went home with PICC line and antibiotics for 4 more weeks), 2nd infection about 6 months after surgery (hospitalized for 10 days), alternating constipation and diarhea.

Hope that helps.

Monique

[Ieva]

I need to refer to the journal I kept (condo is ‘in restorio’ due to a water main leak outside our unit…damage into our unit) and I will respond soon.
My perception is as you may be implying Greg….protocols are not yet mature/standard. We need to assist in its development.
Ieva

[Gord]

1. Had the foley for 2.5-3 weeks post surgery
2. Had the Malecot for 1.5-2 weeks post surgery
3. Was told to irrigate both twice a day, prob should have done it more often, but that is what I was told to do, and what I did.
4. First post op appt was 10 days after release from hosp, 2.5 weeks post surgery.
5. No chemo neccessary
6. First CT scan post op was 7 months after surgery.
7. Don’t really recall being sent home with much (read: enough) instructions.
8. I think it was assumed that there would be some, but not a lot of info was provided as to what they might be.
9. I did have comps (retention and infection), 6 and 9 weeks post surgery. Subsequently have had to go back to day surgery twice for bladder neck widening and removal of scar tissue which was causing retention at 6 and 8 months po0st surg. All is likely due to the funnel type design of my neo. Now need to self cath regularly, something I was told was possible, but not likely.

Great thread, hope you get good feedback

Gord

[Ieva]

Here is Malcolm’s post neobladder regime. His surgery was May 3, 2011:

1. How long did you have a urethral Foley catheter inserted?
Almost 7 weeks

2. How long did you have a suprapubic (Malecot) catheter?
Almost 4 weeks

3. How often were you trained to irrigate the catheters?
We were not trained in the hospital. CCAC came daily until all the catheters were removed. CCAC trained us. I would irrigate as either Malcolm or I saw that flow had slowed to either bag.

4. When was your first post-op appointment with your surgeon?
Just over 4 weeks. He was away at a conference, hence the extra week

5. If you had chemo following surgery, how long between surgery and the start of chemo?
9 weeks

6. When was your first CT scan post op? For me it was about three months as I recall.
8 weeks

7. What post op instructions were you sent home with to help in your recovery?
None that I can recall or find. Our post op info came from you Greg, this forum and the American BCAN forum. As well, our CCAC nurse was amazing! (we lucked in, he had been a head and neck oncologist in Russia).

8. What complications were you told to expect or at least be aware of?
If he spiked a fever we were to go to the nearest ER

9. If you had complications, what were they?
Constipation

Addition:
10. Did your surgeon review the risks/benefits, pros/cons of the surgery to remove your bladder providing knowledge/education and impact on quality of life?
Not really – only the urgency (life/death necessity of bladder removal ASAP).
Referred to the surgeon on April 25
Saw surgeon April 27
Re-did cysto April 28
Pre-op clinic April 29
Neobladder surgery May 3

11. If you had chemo, did anyone review the risks/benefits, side effects of chemotherapy?
Partially – the effects on the immune system, cell counts were discussed and monitored thoroughly; impact on memory, potential neuropathies we had to learn on our own
Continued to have weekly follow-up with our CCAC nurse until chemo was completed. Malcolm had 4 cycles of CIS/GEM…from July until mid September 2011

12. What routine of scans, ultrasounds do you receive post op?
First 2 years, every 3 months, alternating between a CT scan and ultrasound. Appointments also alternated every 3 months between the surgeon and the oncologist. At year 2, the oncologist transferred all care to the surgeon.
This past year, every 6 months.
At 2.5 years a cysto to check the urethra

Ieva

[Greg]

Folks, this information will be shared anonymously with a team of docs who are looking at trying to determine proper protocols to recommend to centres and urologists across the country.

If you have had an RC, please respond, whether with a neobladder or ileal conduit or Indiana Pouch. The more input we receive, the more can be given to the docs.

REMEMBER: They know what it is like to do the surgery, but they have no clue what it is like to be the patient!

Let’s help them understand.

[StephenW]

My experience was similar to Greg’s in terms of timing of various procedures.

1. How long did you have a urethral Foley catheter inserted?
Seven weeks.

2. How long did you have a suprapubic (Malecot) catheter?
Four weeks.

3. How often were you trained to irrigate the catheters?
The nurses in the hospital did the training and told me to do it every four hours. I continued every four hours, day and night, for the seven weeks the Foley was in.

4. When was your first post-op appointment with your surgeon?
Three weeks.

5. If you had chemo following surgery, how long between surgery and the start of chemo?
I have not had chemo. My kidneys are not good and I feel the risks versus benefits are too high. The oncologist feels that chemo would possibly not have too much benefit, as a weaker chemical would be used (because of the kidneys) .

6. When was your first CT scan post op?
It was ordered by the oncologist three months after the surgery, although I had a CT scan the night of discharge due to a bowel obstruction
.
7. What post op instructions were you sent home with to help in your recovery? None.

8. What complications were you told to expect or at least be aware of?
Possible mucus build-up requiring cathaterization, possible constipation, incontinence.

9. If you had complications, what were they?
Two bowel obstructions, about 1 and 2 weeks after surgery. Nighttime incontinence is still an issue.

Stephen

[Dawn]

This is a great initiative. Developing material to help patients would be so beneficial.

I have provided answers below.
My RC & neobladder urinary diversion was May 13, 2013 and confirmed cancer free May 28, 2013.

Here are my answers to the questions:
1. How long did you have a urethral Foley catheter inserted? 16 days
2. How long did you have a suprapubic (Malecot) catheter? I did not have a separate catheter. Dr. Shayegan had everything connected to the Foley catheter – it was quite the visual site when that was removed and no discomfort.
3. How often were you trained to irrigate the catheters? Every 6 hours
4. When was your first post-op appointment with your surgeon? 16 days
5. If you had chemo following surgery, how long between surgery and the start of chemo? No chemo
6. When was your first CT scan post op? 9 months
7. What post op instructions were you sent home with to help in your recovery? none, use Bladder Cancer Canada
8. What complications were you told to expect or at least be aware of? none
9. If you had complications, what were they? None. Once the catheter was out and I drank a good amount of water each day, passing urine was no problem. I had constipation as it was recommended to avoid fibre. However, I reintroduce fibre to my diet and never looked back.

Thanks for your ongoing excellent support of the bladder cancer community,
Dawn

[G and M]

Here is what I experienced.

1. How long did you have a urethral Foley catheter inserted? 6 weeks

2. How long did you have a suprapubic (Malecot) catheter? 4 weeks

3. How often were you trained to irrigate the catheters? Twice per day

4. When was your first post-op appointment with your surgeon? Two weeks

5. If you had chemo following surgery, how long between surgery and the start of chemo? I had cemo 8 weeks before surgery

6. When was your first CT scan post op? 5 months

7. What post op instructions were you sent home with to help in your recovery? Diet instructions, catheter care instructions, prescription instructions, told to walk as much as possible.

8. What complications were you told to expect or at least be aware of? Fatigue, constipation, infections, nighttime incontinence

9. If you had complications, what were they? Pulmonary embolism, DVT, hernia, obstruction of ureters

Additional:

What was your length of stay in hospital after surgery? 3 ½ weeks

How long did you have nurse home care? 2 months

Did you have any training for self catheterization (if required)? none

Glenn

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