Invasive urothelial carcinoma, high-grade, invasive of muscularis propria (T2)
I'm new here. I was just diagnosed with the following a couple of weeks ago after TURBT:
Invasive urothelial carcinoma, high-grade (grade 3 of 3), invasive of muscularis propria (T2)
I don't know yet how it will be treated. The hospital I'm going to has a tumor review board, and because of high demand, I won't be meeting with the board until just after the Thanksgiving holiday. In the meantime, I want to hear from others who have recently gone through something similar so I'll know what to ask the doctors.
I'm 68, female, and have no major co-morbities. I know there will probably be chemotherapy, radiation, or both. I've read that in this case, with a muscle-invasive tumor, a complete removal of the bladder is often recommended.
I have no problem giving up my gynelogical organs (uterus, ovaries, fallopian tubes, and a small section of the upper vagina. I'm retired, so I [fortunately] don't have to worry about time missing work. I live in the northeast United States and have access to good hospitals. In other words, I consider myself very lucky.
I'm interested in hearing your experience.
I was diagnosed T1/HG with CIS in January, 2020. Then underwent an induction course of BCG. It took over 2 months to get a surveillance TURBT due to Covid delays. The BCG failed and I had tumors starting to crawl up into my right ureter. The recommendation from the NCI hospital I moved my care to was for RC. It matched my homework finding as well, since delays associated with other bladder sparing treatments were not associated with good outcomes. I had my RC in July, 2020. The final pathology showed one instance of progression of T2a (into the muscle), so I then did 12 weeks of adjuvant chemo. I have been NED at each checkup since. Given the aggressiveness of my cancer, I think I made the right decision for longevity.
While neither surgery or chemo were fun (nor was the 2 hour drive each way from the NCI hospital that my dear wife handled), I am able to be here today to continue enjoying my retirement, my spouse, kids, and grandkids. If you would like to ask additional questions about the experience, please send me a message. Wishing you every success on your journey.1
edited December 2021 #3
Thank you for the feedback. Yes, I had delays due to the COVID backups, too. I had symptoms at the beginning of August, had a CT that revealed a "mass" shortly after that, but couldn't see a Urologist until mid-September, and didn't have the TURBT until the beginning of November. :-( The fact that you went No Evidence of Disease despite your longggggg wait gives me hope.
The more I look into this, the more I am sure that radical cystectomy is the way to go. I've met with the tumor board and that is definitely what they are thinking, too. We're waiting for the results of the scans I just had that will tell them if the cancer has spread. I'm not a good candidate for the platinum-based chemo drugs, so they're considering nivolumab, an immunotherapy drug, after the surgery. I'll be seeing the doctors on Monday to discuss the scan results and what they now suggest.
Thanks again, and continue to enjoy your retirement and your family!0
Update: In December they discovered that the cancer, which was muscle-invasive, had spread to nearby (adjacent?) lymph nodes. Instead of waiting for me to heal from surgery and then begin immunotherapy, we decided I would indeed do chemotherapy, but have carboplatin, which is less toxic than cisplatin. I'm also having gemcitabine. The current plan is 4 cycles of this, then radical cystectomy (which includes hysterectomy), and finally, a urostomy.
I've just started cycle 2 of chemo, so there's a little way to go, but I'm hopeful.0
Every success on your chemo treatment. They will harvest adjacent pelvic lymph nodes during the RC. It is not easy surgery, but just take one day at a time. Within a couple of weeks post op, every day you feel a little better. The digestive system takes time to heal. Even though I was in reasonable shape and pretty active, you will need support when you get home for a few weeks.0
Update: Still here and doing well. Had chemo, then radical cystectomy (which included a radical hysterectomy and removal of some lymph nodes), and have now started nivolumab (Opdivo) immunotheraphy.
Getting used to the pouch isn't that bad. Glad I had the surgery. @barehead is right that it takes time to heal. The radical hysterectomy is a major surgery in its own right. I think it was 3-4 weeks before I could bend to put on my shoes. My digestive system still doesn't like gassy foods (beans, broccoli, cauliflower, spicy stuff), but I just try a little at a time and go with the flow.0
Glad that you are through the hardest part. Sounds like you are doing well. Keep walking.
If you have any questions on the urostomy maintenance, feel free to reach out. I was fortunate to have some great training provided by the hospital ostomy nurses, and it served me well.
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