1. < Bladder Cancer

Anyone have radiation treated bladder removed?

Posted by journeynw @journeynw, Jun 1 4:33pm

Was originally going to opt for tmt (radiate the bladder and try to keep it).
However, I ended up first in the hospital with cancer obstructing the tubes from my kidneys
They had to do nephrostomy (run tubes through my back directly into my kidneys with bags to empty.
Once that was done they irradiated my bladder anyway
I have since learned that the blockage nullifies the "tmt" approach. Apparently neither my oncologist nor radiologist understood this
So now I have a non working bladder and the surgeons in the area do'nt want to remove it
And I have some cancer back in the bladder
It seems to me that leaving the non working bladder is just adding risk? It also is easy to get bladder infections but the urologist says they can't check it.
Has anyone had their bladder removed after it had undergone radiation therapy. Ocr know of surgeons who will do this?

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

amu45sin | @amu45sin | 19 hours ago
In reply to @journeynw "My metro area only has one urologist who does bladder surgery and they are impossible to..." + (show)
@journeynw

My metro area only has one urologist who does bladder surgery and they are impossible to get in with
I did engage with U.W. which in the NW is a research/training facility with a good reputation. They assigned me a urologist surgeon and he would not do it.
I suspect in the NW they are so overloaded and so my more complex case is not a priority?
That is what I am trying to determine Healthcare in the NW is in severe crisis as our states moved to basically universal access without the resources (DRs) to do it smoothly and you can die of something. Healable due to not getting in timely or at all
I am trying to figure out if that is the primary factor and if elsewhere it may be different.
I know top institutions do this with some success.
I am so exhausted. If I die it will likely be to the system issues in my region I am hoping someone here can help steer me.

Jump to this post

amu45sin here.
I am so sorry you are not getting better care.
Yes, the entire system is strained, and credit yourself for keeping on trying for better and more immediate care.
My urologist duscovered another tumor, flat and aggressive, and it should have been removed in 2 - 3 weeks. I could not get an appointment for 5 weeks. I worry about it daily.
Keep on trying and looking everywhere on the internet.
I wish you the best.

REPLY
amu45sin | @amu45sin | 19 hours ago
In reply to @jaxfl "It took me six oncologists surgeons to get three appointment options. Two in JAX, FL and..." + (show)
@jaxfl

It took me six oncologists surgeons to get three appointment options. Two in JAX, FL and one in Germany. The Baptist MD Anderson surgery date would have been about 6 weeks after TURBT 2. The Mayo surgery date was a week after TURBT 2. I got lucky as the urologist surgeon had a colleague who had a cancellation and I was at the top of the list because of risk.

Other oncologists would not see me timely. I would have seen eight potentially.

So you need to hit up all the hospitals.

Jump to this post

amu45sin here.
Thanks so much for you recommendations on 2 - 8 doctors.
I am trying to do the same, but don't know how or who pays.
I am on medicare and can only work with one medical/ health carrier in order to get medicare to pay.
Not to be nosy, but it sounds like you have financial resources to afford the services you are getting??
Credits to you for being so resourcefull!

REPLY
jaxfl | @jaxfl | 16 hours ago

I am on employer funded commercial insurance (BCBS). They reimbursed each appointment without limits on the number of doctors. I did have to pay my deductible and out of pocket maximum. All doctors except Germany were in-network. Germany would have been fully self funded (€31K) with potential partial reimbursement from BCBS after the fact. Fortunately, I was able to get authorized for the RC surgery at Mayo JAX FL one day before the actual operation.

I had to be very assertive and persistent to get appointments everywhere. The system is so overwhelmed it is very challenging to get in anywhere. The Cleveland Clinic urologist personally texted the Baptist South urologist (his friend) to get me in a few days later. Unfortunately, he insisted on localized treatment first instead of RC right away and he was booked for months into the future anyway.

The Baptist JAX pathology head left his personal cell # on the department land line voicemail. When I called him he told me he had retired but gave me the personal phone number of his replacement. I texted and called this person whilst on vacation in Jordan. He gave me a phone number that made them expedite mailing the TURBT tissue to Natera for signatera and altera.

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