Connect
Anyone have radiation treated bladder removed?
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Bladder Cancer Support Group.
Connect
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.
-
Like -
Helpful -
Hug
1 Reactionamu45sin 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!
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.
If your nodes are already showing growth this explains why bladder removal is no longer indicated. It makes no sense to do this major surgery when the disease is already locally advanced. The typical treatment is EVP or perhaps chemo+nivo in this case.