Possible cancer outside of bladder dome

Posted by fmfran @fmfran, Mar 11 2:38pm

I have some thickening and irregularities on the outside of my bladder dome. I have undergone over 20 operations to scrape and remove cancer. There was extensive burning and scraping in the area of the upper bladder where this is showing. All internal biopsies are negative for cancer. I’m scheduled for a PET scan to check this area as it can’t be seen on a cystoscopy. Does anyone have any prior experience with this? Of course, the inside of my bladder is finally clear and now this. I leave it in Gods hands but if you have any info, please share.
Thanks to all you fighters!
Francis

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

jaxfl | @jaxfl | Mar 12 1:13pm

PET can show malignancy and inflammation.

If ruled malignant this is typically locally advanced and stage 3 which usually requires systemic treatment. Chemo, ICI, chemo+ICI (rare), or targeted treatment+ICI (EVP).

fmfran | @fmfran | Mar 12 3:24pm

Hi, thanks.
You seem to know a lot about this condition and I appreciate your insight. My doctor mentioned radiation. I’m not sure about some of your acronyms but I will look them up. I’m still determined to keep my bladder. The BCG worked great but this is outside the bladder so I guess I’m going down a new road. Thank you for taking the time to give me this information. I’ve been fighting BC for six years and 21 surgeries. I hope you are well and I will pray for you.
Fran

jaxfl | @jaxfl | Mar 13 4:52am

Radiation is usually trimodal: TURBT (not possible in this scenario), chemo and radiation. Never heard about it in stage 3 cases without systemic therapy.

Regardless, good luck!

fmfran | @fmfran | Jul 2 8:24am

So after a CT Urogram and another cystoscopy, the inside of my bladder is completely free of cancer after multiple BCG treatments. Unfortunately, the thickening of the bladder wall in one spot is causing concern to my urologist. He can’t biopsy it from the inside. I was referred to t(e urology oncologist for consultation. After a thorough review of my images we have decided to proceed with a partial cystectomy. Once again there is no way to biopsy with certainty whether it is inflammation, an infection, or a tumor. It will be removed by robotic arthroscopic surgery, the bladder will be repaired and the mass will be biopsied. It is outpatient surgery so I’ll go home the same day. It is a small area of a few centimeters.
Has anyone had this type of surgery? What was your experience? So far there has been no indication that it is definitely cancerous. I saw a blood doctor and the CT urogram was inconclusive. I like the surgeon and my urologist and have faith in their opinions.
Fran

Colleen Young, Connect Director | @colleenyoung | Jul 15 8:12pm

In reply to @fmfran "So after a CT Urogram and another cystoscopy, the inside of my bladder is completely free..." + (show)

@fmfran, arthroscopic surgery is minimally invasive A surgeon inserts a narrow tube attached to a fiber-optic video camera through a small incision — about the size of a buttonhole. I know it is commonly used for joint surgery.

When will you have the surgery?

jaxfl | @jaxfl | Jul 15 8:36pm

Wait and see. I found now over almost 2 years that worrying too much does not change outcomes. However, I sympathize with you and will keep you in my prayers.

Sue, Volunteer Mentor | @sepdvm | Jul 16 7:54am

In reply to @fmfran "So after a CT Urogram and another cystoscopy, the inside of my bladder is completely free..." + (show)

@fmfran My husband's first surgery was a partial cystectomy because his initial bladder tumor was in a diverticulum (pouch) off the side of the bladder. It was an open surgery and many lymph nodes removed. There was a hospital stay and indwelling catheter for a while. He has since had a couple of robotic surgeries and that has been so much easier. The postop discomfort and healing time is minimal. You will do great. I hope for no evidence of disease in your biopsy.