? for Purgatory and anyone who had PCa spread to bladder

Really just looking for your take on this.

Urologist and medical oncologist both said that husband's bladder would have to be removed. Urologist said, he could make a new one but that he absolutely would not since it would be destroyed in the likely event of husband needing radiation due to his advanced stage.

Radiation oncologist said it didn't matter whether the urologist removed the bladder or made him a new one, as a new one could not tolerate radiation and that his intestines would likely fill the empty cavity if the bladder was removed and that would prevent radiation also.

Then... after meeting with radiologist again, he stated that he felt "certain: that he could radiate the tumor off his bladder and save it! Naturally, this was the best news my husband had heard in a month. Oh, aside from this same doctor using the "CURE" word in the first meeting.

Personally, I think the radiation oncologist is giving false hopes to assure he gets to do radiation before the urologist cuts (no pun intended) him out of the picture.

Husband was totally against radiation and is now placing it up higher on the list because of this "certain" deal to keep his bladder.

Any thoughts on any of this?

 

I kind of ran in to the same indesiveness with MDA's docs, which really disappointed me. Seems that instead of working together and coming to a general consensus, they were competing against each other. Very frustrating indeed and the last thing you need right now.

Am I correct thinking that t4n1m1, surgery is usually avoided? Are they suggesting that they want to remove the bladder, but leave the prostate? Or, did I miss something?

I guess you could tell all three docs that you need a consensus and see what they agree to-put the burden on them to agree and see what comes out of it. With the seriousness of t4, I think that a 2nd opinion from another organization is warranted. Dont let the hipe of how great MDA is deter you from a 2nd opinion.

I realize the energy and effort to find the right treatment path can be tiring, but it will pay off in the end. So, take good care of yourself. Eat right, get rest and keep your family/friends close. Best wishes.

Ms,

It's important to know, that there was no cancer spread to my bladder. My bladder was perfectly fine prior to having salvage radiation. I did have a lot of chronic stricture problems at the bladder neck, due to difficulties in surgery and my body's annoying way of over-scarring while healing. That took 6 corrective surgeries, and there was never a final solution at the time, thus all the catheter time.

My bladder and bladder neck were basically "cooked" due to the radiation being incorrectly delivered with a dry bladder, instead of having a bladder full of water. That is the basis of my ongoing litigation with the radiation clinic.

My uro and I, worked together for 11 months, to see if there would be any natural healing over time, and it never happened, in fact it progressively got worse, and left me with severe pain and hundreds upon hundreds of painful spasms, any attempt to uriniate naturally resulted in Scale 10 pain.

There was talk of me having a complex bladder neck reconstructive surgery done by Dr. George *somebody* at Duke, but that doctor said that there was too much radiation damage, and that the surgery would probably be a faillure and leave me 100% incontinent for life.

I was left with making a tough decision, I could no longer take the constant pain after 11 months, so I consented to the Ileal Conduit Surgery, which created an Urostomy (stoma), by by-passing my bladder entirely. My surgeon did not want to remove the bladder since it didn't have evidence of cancer, and said its abscence would create possible severe digestive problems.

So it was a tough surgery, 5 1/2 days in the hospital, and an incredibly long recovery. Because my bladder was left intact, I still have several painful bladder spasms daily, because all the nerves are still intact, even though nothing can enter or exit my bladder.

So for life, I have to live with this gross stoma, and needing to wear an ostomy device, that has to be changed every few days.

If your husband ends up with that route, I could provide you with endless information that we had to learn the hard way, about the life of an ostomy patient. It's been almost a year since the surgery, and I still don't feel "normal" in any sense of the word, but its my reality, and I have to live and deal with it.

david in sc

Thank you for clearing up my questions. Med. and Uro say radiate after surgery and Rad says no can do. I would tell Med and Uro about that and see if they have a change in mind.

As to why radiation with bladder vs. w/o bladder question. Since the Rad is so persistant, ask him and make him explain.

This is my guess: When they radiate, they try to hit the exact same spot from the same angles each treatment. The bladder holds everything together. With the bladder and prostate gone, things will move around in the void. So, radiating the exact same spot could be quite a challenge.

I wish I or someone on this forum could give you an easy answer, but we are not doctors, just patients who care. That is why I suggest getting another opinion from another doctor, so that you can come up with a plan you both can feel comfortable about.

Dr.s contradicting each other within the same organization is frustating.