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.
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.
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 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.
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
6 BCGs 2018
3 Maintenance BCGs 2019
Return of CIS Sept 2019
Bladder, prostate and urethra removal Oct 2019