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Bladder cancer: Anyone treated at Mayo Clinic?
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.
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Welcome!! I’m sorry you’re having such troubles. I’m new here too, not a Vet, and have different health issues. You’re right in thinking that people here are kind and want to be helpful. I unfortunately can’t answer your questions but I can recommend this site for venting in a polite way, for connecting with others who have similar experiences and health issues and for just wanting to be helpful as well. I hope someone can be of help to you. As far as the VA goes, my daughter’s boyfriend is a disabled Vet, we all just moved to MN last year from Texas. He complained about the VA there all the time and more so now because he’s in love with the VA here. He can’t believe the difference in his care from one place to the other. I’m happy for him because now he’s getting the treatment he needs and in a timely manner. I hope you can find the same relief, sooner rather than later.
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1 ReactionThanks for your reply....
Several vets recommended the VA hospitals in Phoenix and Madison, Wisconsin.
Until this experience, I've been given excellent service at both.
When I question their lack of follow-ups, they never offer explanations... only "We're sorry."
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1 ReactionReminds me of basic training while in the Air Force...
A guy goofed up, and Sarge was giving him a hassle.
The guy kept repeating "I'm sorry, I'm sorry."
To which Sarge replied "I didn't ask you for a character reference."
I can relate, I have issues that I seem to hit a brick wall on, one of the main reasons I am seeking a new PCP. I swear I’m going to scream if I can’t find someone to listen and help. The brick wall needs to come down!! Good luck in your future.
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1 ReactionHope you have better luck getting your PCP's attention....
The old "The squeaky wheel gets the grease" routine gets exasperating, but might be your only solution. Keep bugging them, but do it more often!
In my case, being a vet, the VA Triage line did the bugging for me.
When I left messages for the PCP, I stood less than a 50% chance of getting a return call within a reasonable time.
After contacting Triage, they made the call... BIG difference! Those calls were returned 100%, almost all within a reasonable time.
For fellow vets, here's the info:
VA Nurse Triage Line (call 24/7) 1/888-598-7793
By contacting Triage, in essence you're going over your PCP's head... although they would be too proud to admit it.
During a recent return call from my PCP I mentioned discussing my bladder issue with the Triage nurse.
She cut me short with "Who are you gonna listen to, her or me!"
Any way, Best of luck to you also.
During basic training, the Sarge's job is to be an A**hole, and most are good at it!
After about week three they tended to go a little lighter.
One evening I went over to the social center, and Sarge invited to join him shooting pool.
He soon commented "Son, we're here to teach you discipline."
To which I replied "I'll tell you Sarge, I had tougher discipline while in the Boy Scouts."
He got a kick out of that, because he knew it was true.
Thanks for your comments, and encouragement.
Good to know that your daughter's boyfriend was finally able to contact another VA facility to get proper care.
Hello. My husband had aggressive bladder cancer and eventually radical cystectomy and neobladder at Mayo Rochester 2019-22. He is not a veteran so no VA. Between my head and neck cancer surgeries and treatment for 11 years at Mayo and our experience with my husband, there has never been an issue with insurance or Medicare. I am always surprised by the reasonable medical charges at Mayo. It would be worth inquiring about the VA benefits there, as the diagnostics and care are above and beyond other medical facilities. Good luck yo you and thank you for your service.
Thanks for your reply....
My next step will be making direct contact with Mayo, to see if they can enlighten me as to possible bladder surgery coverage via the VA.
I longer trust the VA with serious medical procedures.
Bladder cancer demands close and frequent followup, which hasn't happened for at ten years.
With the latest issue, blood in urine, all they did was poke and probe... with puzzled looks on their faces. At least six different doctors, in the clinic here in Rockford, and the VA hospital in Madison, WI.
Their usual response has been "We're sorry,"... that's certainly not encouraging!
I have to be discreet, and see this almost as a political issue. I don't want to offend the VA, in the event I have no choice but to let them hack me up.
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1 ReactionI think you are moving in the right direction. My father , now deceased, was Air Force. My mother as a widow has medical coverage thru the military, and rcvd treatmentvin avrural area. She chose a more experienced cancer center for her treatment for bladder cancer when it recurred and had excellent care there .
Thank you for your service. Hoping you find care that is the best!
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