Bladder cancer: Anyone treated at Mayo Clinic?

Posted by gordy6898p @gordy6898p, Oct 6, 2023

I love this site, lots of kind folks here....

I'm not looking for sympathy, just sound advice.

I'm an Air Force vet, 1961-1965. Until recently the VA has been a blessing.

In 2000 a small bladder tumor was discovered, which was removed.

From what I gather via Google, Mayo and the Cleveland Clinic are excellent sources of reliable information.

Bladder tumors tend to return. So periodic cystoscopes at least once a year is recommended.

All of which were performed at least 5 times. However, the last at least 10 years ago.

About a year ago, I had lower back surgery. The surgeon mentioned that within a few days I should be walking normally, without pain.

That hasn't happened.

Since then, I also started having pain in the lower abdominal area.

From what I gather, pain there along with lower back pain are common symptoms of bladder cancer.

Long story short, several VA doctors were baffled by my "problem." All they ever did was poke and stare with blank faces.

All that changed about a month ago, when I started passing blood and urine. That seemed to catch their attention.

A CT scan noted thickening of the bladder wall, and a "closer" look was advised.

After light blood levels were noted, a second CT scan, with contrasting fluid, was performed. That's when the tumor was discovered.

However, only the worst part of the tumor could be removed at that time.

Followup CT scans, with contrast, were performed on the lower abdomen and upper chest.

They found no evidence of cancer cell invasions. Sure hope they know a lot more than the VA doctors.

About a week ago they started Chemo. Three weeks from now I'm scheduled for another exam at the VA hospital in Madison, Wisconsin.

Here's where my request for "sound advice" comes in. In short, I no longer trust the VA.

Has anybody here had major surgery performed at Mayo, while covered by VA benefits?

Thanks for your kind attention.

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

gordy6898p | @gordy6898p | Nov 5, 2023

In reply to @lbrockme "I think you are moving in the right direction. My father , now deceased, was Air..." + (show)

Thanks, I'll start checking around.

Making contact with Triage only could be a good start, just to see what their thoughts might be. Triage makes appointments after I first speak with a nurse there. If I do it on my own, chances are less than 50% of hearing back, unless I keep bugging them by leaving messages.

As I mentioned some time ago, the doc at the clinic here in Rockford was upset when Triage made my first appointment, said "Are you gonna listen to them, or are you gonna listen to me?"

Obviously, contacting Triage involves going over other's heads.

I only signed up for a 4-year hitch with the Air Force, and VA benefit are incredible, probably at least 95% the same as for those having retired from the military.

For example, I'm not eligible for dental care. Emergency care outside the VA is an exception, they do cover that.

As far as having bladder cancer related surgery outside the VA system, Triage should be able to answer my questions.

Thanks again for your reply.

Lynne Marie | @lbrockme | Nov 5, 2023

In reply to @gordy6898p "Thanks, I'll start checking around. Making contact with Triage only could be a good start, just..." + (show)

Praying it goes smoothly!