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Plasmacytoid tumor in a diverticulum

8 months 1 week ago #59061 by Racerboy
Thank you for your input. I’m leaning towards the ileal as I value my sleep.
I will be at Mayo Hospital, I think
In good hands
BR

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8 months 1 week ago #59060 by Racerboy
Thanks, Jacko
Reflection from a patient is worth 10 times the surgeons.
Self-image is pretty much off my radar. Having just had a catheter for 5 days following cystoscopy, I have no urge to self catheterize. I was happy to sleep through the night.
Thankfully, my wife is on board with any decision I make.
BR

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8 months 1 week ago #59059 by Jacko
Hi Racerboy

I am 3 months out from an RC plus removal of my urethra. I had the ileal conduit diversion 'installed'. I'm a reasonably fit and active 69 year old, not over weight. I had 2 experienced surgeons working on me (and remember the urethra component adds some time to the work involved) but they completed the operation in 4 hours, a record for them I think. Despite this, recovery was rugged for the first 4 weeks, my heart went into AF (not unusual apparently after major surgery) and I had an infection in the wound. For pain management I had a 'block' aesthetic for 4 days, opioids and panadol for another 4 and then onto panadol on its own for a few weeks. I was in hospital for 12 days. It took me agers to get my bowels back to normal, they still need 'managing'. Three months out and I'm pretty much back to normal apart from some tiredness but not restricted in my activity apart from being careful about lifting. The bag changing comes easy after a few weeks and I get to stay in bed through the night as I'm connected to a night bag on the floor. That's a great bonus.

It's no picnic, it's rugged. The nurses are the ones who give you your life back and the stoma therapist becomes your best friend for a few weeks. I reckon you need very good home support.It's a new normal.

I guess at 76 you have to work out if the body image bonuses of the other type of diversions are worth the risk of much longer surgery, infections, the work involved in training the neo bladder and any leakage involved. I have had no leakage at all with the conduit.

For me it was not a hard decision. There is a lot of help on the various FB sites, surgeons are helpful but not as much as a candidate!

Jacko

CIS diagnosed May 18
2 TURBS
6 BCGs 2018
3 Maintenance BCGs 2019
Return of CIS Sept 2019
Bladder, prostate and urethra removal Oct 2019

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8 months 1 week ago - 8 months 1 week ago #59058 by Alan
Welcome racerboy,

I had not had a cystectomy however, I am pasting a link (Go ahead and copy and paste) which many of us have bookmarked about the 3 main diversions and what is involved. See: https://my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion

Two other observations. Most posters seem to accept whatever the diversion they had done. Also, whoever does yours you want a doc that does many a year! I have seen notes suggesting at least 25-35 a year minimum over several years. Be sure to ask questions on why they may refer one over the other....probably a mixture of expertise and experience dealing with patients.

You might re-post if you are leaning toward a specific type as some posters may respond more quickly to that diversion.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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8 months 1 week ago #59057 by Racerboy
Things are moving so fast. I went to an ER with painless hematuria. A CT revealed a mass in a bladder diverticulum.
Through a cystoscopy , mass was identified as a superficially invasive plasmacytoid tumor, aggressive and high grade.
I am scheduled for a radical cystectomy February 19th. I feel fairly positive about the outcome but I wanted some opinions about the best method of urinary diversion. I am leaning towards Ileal conduit but my surgeon will do a neo-bladder if I wish. I have read that recovery and complications attend the neo-bladder reconstruction. Despite being 76, I have always been an athlete, competing in swimming, triathlon, riding bicycle centuries and what not. What do forum members think would be the best diversion methodology?

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