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  • Plasmacytoid tumor in a diverticulum

    Posted by Racerboy on February 11, 2020 at 1:38 pm

    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?

    Racerboy replied 4 years, 5 months ago 4 Members · 10 Replies
  • 10 Replies
  • Racerboy

    Member
    February 14, 2020 at 8:27 pm

    Thanks
    About a month from diagnosis to surgery for me at Mayo Hospital.
    Hoping for the best!

  • jamesf

    Member
    February 14, 2020 at 6:37 pm

    Hi Racer,

    Although there is not a ton of literature out there for the plasmacytoid variant, there are studies that suggest the outcomes are comparable to similarly staged common non-variant urothelial cancers. The “dismal” outcomes in many cases are related to the advanced stage at which it often presents.

    Main piece of information I can give you is to make sure you are at an institution that sees these rare cancers and knows how to deal with them.

    My wife just had surgery Jan 23 (she has had chemo for the previous 6 months) so all of this is pretty fresh right now. Of course I can only describe what I have observed from a caregiver’s perspective. If you have any questions feel free to ask.

    Thanks,

    James

  • Racerboy

    Member
    February 14, 2020 at 12:47 pm

    Your post means a lot to me. I guess perhaps I have done too much research. Everything I have read indicates that this type of tumor results in a “dismal” outcome in medicalspeak. I am happy that your wife is doing well 7 months after surgery. My pathology report indicates only superficial invasion of the diverticulum wall. I have always taken a lot of vitamins and supplements but since being diagnosed, those only increased the hematuria. I have stopped taking them and urine has cleared up. Urinating blood all the time is a little off-putting.
    If speed means anything, I will be operated on within a few weeks of diagnosis.
    Thanks again

  • jamesf

    Member
    February 14, 2020 at 5:09 am

    Hello Racer,

    I noticed your post because of the plasmacytoid heading. My wife has this rare form of bladder cancer as well. I have posted how her experience has gone in the Muscle Invasive Forum. Without repeating much of what I have previously posted, I can say for her the ileal conduit has worked out well so far. If you have any questions we have become pretty well versed on this variant of cancer over the past seven months.

    Thanks,

    James

  • Racerboy

    Member
    February 12, 2020 at 12:24 pm

    Thanks for the details. I will keep them handy. If you ever want to communicate through social media, I am on FB.
    I don’t really care about anonymity but I’m sure many patients do. I still hike a lot. I love being in the desert. And I bike a lot. I will have to see about swimming. I have always competed in open-water races so I’ll have to see if I can do that. I’m also an on-lime gamer and that takes my mind off dwelling.
    Thanks again.

  • Jacko

    Member
    February 12, 2020 at 7:36 am

    Unfortunately for you I seem to be your only responder; it would have been good to get alternate views. I know there are many with the other type of diversions who would sing their praises. My reasons for the iIeal conduit were my age and speed of recovery. You will feel vulnerable and out of your depth for a few days but if you have a good stoma therapist they will increase your confidence in managing your stoma and appliances.

    Getting used to sleeping with the night bag requires a bit of trial and error. I’m reluctant to share this as it sounds involved and complicated, but if you like your sleep you will thank me later. It won’t mean anything yet but here are my tips for a good night sleep. (The therapist is unlikely to have learnt this bit)

    1.You will probably be sleeping on your back until it’s comfortable to sleep on your right side, the stoma side. Won’t take long.
    2. Have the night bag as low as possible. Mine is lying in a plastic box next to the bed.
    3. Make sure that the pouch is 1/3 to 1/2 full before connecting up the night bag pipe. After connecting you will turn on the tap to allow your pouch to empty into the night bag. This primes the system and removes any air locks, and causes a slight vacuum in the pouch. Use an elastic velcro strap to loosely tie the pipe to your right thigh.
    4. As you lie on your right side the slight vacuum helps any further urine to drain through the pouch down into the night bag. It took me a while to get this right so the pouch used to fill up without draining to the night bag and i had to force it through several times during the night. Depending how much I drink there is usually 1.5 to 2 litres in the bag in the morning and the pouch is empty. I’m pretty dehydrated in the morning.
    5. Just after waking is the best time to change the pouch as the stoma is still waking up but it can still trick you!

    I know it sounds daunting and it is for a few days but its a dream compared to weeks of ‘training’ the artificial bladder solutions and still having to get out of bed during the night.

    You should be able to return to sport especially if you use a special belt to hold the pouch.

    Take care,.Grace and Peace to you and your wife.


    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
  • Racerboy

    Member
    February 12, 2020 at 2:36 am

    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

  • Racerboy

    Member
    February 12, 2020 at 12:32 am

    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

  • Jacko

    Member
    February 11, 2020 at 5:59 pm

    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
  • Alan

    Member
    February 11, 2020 at 5:17 pm

    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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