Small cell carcinoma of the bladder (SCCB): anyone else?

Good morning Richard,

Thank you for letting us know. So the surgery went smoothly for you and I’m glad this is behind you!. My husband didn’t have stent after the surgery. Our experience is that if you drink large volume of water daily during the first week after the surgery, it helps alleviate the spasms and the burning sensation. My husband drank one gallon of water everyday, to a point he couldn’t look at the water anymore at the end of the day. Of course you will have frequent urination, plenty of water helps flush out the clots, blood and the rest of the toxins. Try to avoid coffee during the first week and of course finish all your water intake at least 4 or 5 hours before bedtime.
Our thoughts and prayers are with you, it can be stressful while waiting for the biopsy, now looking back, I’d say, maintaining a positive outlook can make things a bit easier. It is definitely easier said than done. We tried meditation, he said it helped him a great deal some days, but there were days he just could not bring his mind to focus on the here and now.

Get plenty of rest, please do not hesitate to reach out, I can be a listening ear at the very least.

Jas

Hi Richard, my husband had TURBT to remove 2.5cm tumor from his bladder in Aug 2021.

The surgery itself was not long (less than a hour), they flushed his bladder with the same chemo drug as you mentioned right after. You will stay in the post-op area for about 2 hours, after then the nurse will get the chemo fluid out through a catheter, you will be asked to sit on the toilet to pee at home for the first 8 hours and add bleach to the toilet bowl, soak it for a while before flushing. You should be drinking lots of water during the first 8 hours after you are discharged.

You will have burning sensation for about two days or less. They might give you some medication for that which makes your urine orange.
It is stressful waiting for the biopsy result, which determines whether the tumor is benign or malignant, and if malignant, it will tell you the grade and stage. We have been through all these, if you have questions, please feel free to reach out.
Wishing you the best of luck on Tuesday!

Jas

Hi Jas and Loribmt, biopsy results showed my tumor was a Papillary urothelial carcinoma, noninvasive, low-grade. I have an appointment to discuss the results with my medical team in a few days. On the face of it, seems like the best I could ask for.

Hi Jas and Loribmt, biopsy results showed my tumor was a Papillary urothelial carcinoma, noninvasive, low-grade. I have an appointment to discuss the results with my medical team in a few days. On the face of it, seems like the best I could ask for.

@loribmt @jas2504

So I'm in the hospital, nasty UTI. I don't know if it related to being scoped on Feb. 9. My immunoglobin G levels are very low from Smoldering Myelomabl but Medicare rejected an IVIG infusion to raise them. I'm not a doc, don't know if this is a factor; 2nd UTI in 4 months.

Hi Richard! Oh my gosh, I’m sorry to hear you’re in the hospital with a UTI. Those are so nasty and really leave you feeling pretty miserable. Not sure if it’s related to the scope or not but having a compromised immune system can raise the possibility of repeat offenders. That IVIG infusion would give you antibodies to fight infections and diseases with your weakened immune system.

I’m not an expert on Medicare but I looked online for information about IVIG infusion coverage. This article from Ameripharmspeciality.com came up with the list of accepted application codes for IVIG for specific illnesses. Not sure if this will help you or not. It would be nice if you could get that request resubmitted. https://ameripharmaspecialty.com/medicare-ivig-coverage/

I hope you feel better and are back home soon!! Hugs!
Are you on antibiotics now?

@richardab, Hi Richard, are you back home from the hospital now?

Hi Lori, yes, I was in for 2 days, out since last Wednesday and all seems okay on that front. I'll start taking antibodies prior to and following future cystoscopies, which I'll have quarterly for the next 2 years to prevent future UTIs. Fighting it out with Medicare, trying to get IVIG infusions for low immunoglobulins approved (I have Smoldering Myeloma) but they're resisting, it's a quite expensive treatment. They cited their medical reasons for rejecting treatments; I've given my hematologist/oncologist blood test results as evidence my antibodies are pretty shot. Thank you for your concern, it means a lot.

Good morning, Richard. Pfhew. I’m glad to hear you’re back home. Hospital food isn’t the best. 😅 Sounds like you have a good plan with your doctor now for taking prophylactic antibiotics with the scopes. That should really help you out. Not sure if you’re a yogurt eater or not, but when you’re taking antibiotics it can help the guts to stay happy if you have a cup of yogurt a few hours before or after your pills. Activia yogurt works well. I was on 2 antibiotics for a several years and yogurt was the key to keeping my intestines healthy.
I’m sorry you’re having such a hassle with Medicare! Their coverage is always such a mystery to me! A few years ago during my recovery period from my transplant, I needed daily infusions of magnesium. I wasn’t able to take oral meds yet so I needed the infusions. They were hugely expensive and took 2.5 hours daily or 5 hours every other day in the infusion center at Mayo. The clinic was great in letting me know there was an option for doing the infusion at home (in my hotel room) for much less $$ and they’d set me up with that system. I was willing to do that myself but Medicare wouldn’t cover it!
Your blood results should show your need for IVIG antibodies given your current immune compromised state. Plus it’s not something a doctor suggests lightly so the need is there!
I’ll keep my fingers crossed for you in hopes this gets cleared! Sending a hug! And drink more water! 😅