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Update from my uro about a bladder scan

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Posted 7/20/2012 2:39 AM (GMT 0)
As promised, my uro called me right on time today.  He didn't have good news, as he talked to this scan specialist and discussed the complications in my particular case, trying to find out what is going on inside my by-passed bladder.  They discussed MRI, Cat Scans, Pet Scans, the something-rectal coil MRI's, and a few others, but my complications make all of them mostly useless.  The scan guy said they needed to be able to do a scan with a good contrast in the bladder, but since the bladder is collapsed, and there is no practical way to enter the bladder, it would make most of the scans useless for what is needed.  His only suggestion was to do a full pelvic MRI, and hope that something would show up, but he thought that was unlikely.

My uro seemed disapointed himself, as he's aware of the risk I am in currently, and at every avenue, there's a new problem.  Kind of a catch-22.  If we knew there was no cancer going on for sure, then there wouldn't be a problem about not doing anything, but if there is, then time is a big issue, as there could be either cancer spread from the PC, or it could be actual bladder cancer seperate from the PC.

He suggested that I talk to my oncologist, which is next week, bring him up to date, and see what he suggests or wants to do differently.  I had those MRI's done in April, so I need to find out for sure, what they were taken of, and if they were good enough for this use.  I am pretty sure they were just related to the pain in my back and that mystery spot that showed up.  I do not believe they were full pelvic scans.

So for now, its up in the air, it just gets funner and funner for me all the time,  I am so close to saying screw it, end all this nonsense, and just let nature do whatever it wants.  After 4 years of all these horrible things happening to me and the constant pain, its starting to seem pointless to me.  Don't even see the point of having any more PSA tests, because its just going to keep going up regardless.

Sorry, a big of a minor vent here, because there's never an easy answer with what is going on with me.  And I honestly don't catch a break.  If he could have simply entered my bladder through my urehtra like a normal guy, we could have better known what was going on.  And in most men's cases, that could have been done simply in the uro's office, let alone having an aborted surgery which proved nothing.

david

Posted 7/20/2012 5:59 AM (GMT 0)
I don't know what to say... except, I can tell you that it is an endorectal coil.

And like something funny I read from another thread, only about 10% of the men who get one, enjoy it! :)
Posted 7/20/2012 6:05 AM (GMT 0)
Sorry David to hear this. I remember you mentioning that your bladder could not have been taken out during the first surgery because insurance would not have covered it. Do you think that perhaps now you would have a case? From what you have said, your bladder serves no purpose anyway. It could then be sent to pathology.

You could also ask for a second uro opinion, perhaps another guy would have another idea. As I say to myself so many times, take it one step at a time.
Posted 7/20/2012 6:49 AM (GMT 0)
I was afraid that would be the case.

Maybe your oncologist will have some ideas or can refer you to someone.

Isn't there perhaps a network of doctors, where your doctor could post your situation, and maybe a doctor who has dealt with something similar could respond?

Grasping at very thin straws, but it wouldn't hurt to ask.

Mel
Posted 7/20/2012 6:55 AM (GMT 0)
David,

I always follow you on this forum and the trials and tribulations you go through and I am continually in awe that your humor and optimism continues to shine through in your posts. If I were in your shoes I would, no doubt, be a wreck. I know that nothing I can post can help you or your situation, but just know that we are out here reading your posts and are grateful that you keep us informed and enlightened as to how a brave person fights this disease.
Posted 7/20/2012 11:40 AM (GMT 0)

MsWorryWart said...
I don't know what to say... except, I can tell you that it is an endorectal coil.

And like something funny I read from another thread, only about 10% of the men who get one, enjoy it! :)

Last year while at MDA, I had decided that I wanted a colonoscopy and got lucky to get a quick appointment due to someone else's cancellation. Had an endorectal coil MRI schedule the day after, but didn't exactly know what that was. During the MRI, I was rethinking my luck shakehead

We all know that you are not the type of person to just say screw it, but can all understand your frustration. Cant think of anyone that has handled the trials and tribulations you have endured so bravely. Sounds like your Uro is running out of ideas and he has done his best. No harm in seeking "out of the box thinking" from a bladder cancer specialist just to see if they have any ideas. I am sure your uro would be happy to consult with you during this process.
I've seen people get advice to find a prostate cancer specialist on this forum many times for PCa. I am sure there are bladder cancer specialist also.
Posted 7/20/2012 1:02 PM (GMT 0)
David,

I do not know what to say. Wish you good luck.
Posted 7/20/2012 1:22 PM (GMT 0)
That is hard news to deal with.

Wish I could do more than say, "thinking and praying for you."

Andrew
Posted 7/20/2012 1:22 PM (GMT 0)
David, just one question comes to my mind- what would your actions be if you did get a good bladder sampling and it showed cancer? I think your answer to that would determine whether you should continue with further attempts at testing, etc. If your answer is that you would do nothing anyway, then........?????
Posted 7/20/2012 1:45 PM (GMT 0)
Thanks to those that replied.

The Coil MRI sounded promising, its a tool that can be used to detect bladder cancer, but can't have that since my bladder is collasped, and there's no way to have a contrast done.

James - if there was clear proof of bladder cancer, then the solution would be easy - remove the bladder, there would be no justification problems if it was the case.

When I talk to my oncologist next week, putting the burden back on him. Though my uro is top notch, very experienced, and been a champ with me for 5 years, I may need to get a 2nd opinion. But when another dr. reads my history, its going to spook them a bit, just like it it did the bladder neck recontructionist dr. at duke that time. Not every dr. wants to take over on badly damaged goods.


david
Posted 7/20/2012 2:49 PM (GMT 0)
hey david, you may have answered this in the past but i was wondering if just going ahead and removing the bladder would be a better course for you. i have a friend who had his removed after a car accident did a bunch of damage and he has recovered nicely. i know your situation is quite unique with the radiation damage. good luck to you man, tim
Posted 7/20/2012 4:11 PM (GMT 0)
Purg,

If it's not one thing it's another...

I had asked in a previous post why they left you bladder in and did not remove it. Now I know...insurance...

One day at a time...one thing at a time...

Best wishes.
Posted 7/20/2012 4:25 PM (GMT 0)
thanks. nothing more to say really. between a rock and a hard place with this situation. sometimes, you just don't get the answers or solutions you are hoping for.

david
Posted 7/21/2012 4:57 AM (GMT 0)
Sorry to hear of the latest difficulties. Just grasping ay straws here, but if the collapsed bladder is the reason they can't do a scan, is it possible for then to go in laproscopically, fill the bladder with saline, and then do the scan?
Posted 7/21/2012 12:52 PM (GMT 0)
Sorry to hear the news.  I think you said it best, "between a rock and hard place".
Posted 7/21/2012 1:31 PM (GMT 0)
David,

Certainly ok to vent, as you have traveled far down the hard road, and the rest of us would have turned back miles ago.

With hundreds of thousands of Pca diagnoses yearly, it's possible/probable there are, or will be, a handful of other cases similar to yours. So your detailed posts will be of value to them, and their doctors, for as far as you want to go with it.

Seems apparent your circumstances are beyond the grasp of almost everyone on this board now. Please don't take minimal responses to your posts the wrong way--we all wish the best for you anyway, even if we don't know how to contribute.

Bobbie
Posted 7/21/2012 1:33 PM (GMT 0)
David, distressing news to say the least. Someone, somewhere, just has to have a solution. In the meantime I wince whenever I read of the pain you are dealing with minute by minute.

Sheldon AKA Sleepless
Posted 7/22/2012 4:36 PM (GMT 0)
thanks, sheldon, can always count on your for a kind or comforting word.

just feeling a little frustrated and discouraged, it would be nice if just once, in this journey of mine, that i could
just do something in the "normal" or expected way. Every time I turn, there always a reason why that is not
the case, I get tired of being the "exception" and would love to be the norm.

hopefully, when i unload everything to my oncologist this coming wednesday, he will be able to get my head back on right again, and able to see something positive out of this.

we are running out of options in this particular case, there are only so many avenues to try.

hope you keep doing well

david
Posted 7/22/2012 5:40 PM (GMT 0)
....if there was clear proof of bladder cancer, then the solution would be easy - remove the bladder, there would be no justification problems if it was the case.

 

David,

Would that be the same conclusion if it was PC within the bladder?  Would there not be more options if it was PC vs. bladder cancer? 

Jerry L.


Posted 7/22/2012 6:28 PM (GMT 0)
David,

It's good to vent. If I was going through all this stuff, I'd be venting like an industrial smokestack.

I've got no words of wisdom for you, and certainly no medical advice. But I'm thinking about you and wishing you the best, whatever that may mean.

Hang in there and try to keep your sense of humor.

Jonathan
Posted 7/22/2012 7:16 PM (GMT 0)
Jerry,

Good question, easy answer. If there were evidence of PC in the bladder, then it would be PC cancer. Which with my fast rising post-SRT PSA, that is a possibility. Of course when PC invades another area or organ, it is still PC. But if there was cancer, it could also be some strain of bladder cancer itself.

In either case, depending on the severity, they can often go up with a scope, and scrape and cut away the cancerous portion, and then treat with radiation if needed. If it is more serious, then they would remove the entire bladder, and normally followup with radiation. This would be true if it were PC or true Bladder cancer.

In my case, if found by whatever means, there would be no way to do the scraping or partial removal, it would involve a full blader removal surgery, which would be complicated by the fact the my bladder has already been by-passed with the ileal conduit surgery.

And, all my doctors agree across the board, I can not ever have any more radiation for any reason in that area, as I am so far past any safe lifetime limits, that, and the fact that I already have so much severe radiation damage nearby. So that presents another catch-22 if any cancer was found.

Definitely no easy answers or solutions in my situation. Will see what my oncologists thinks next.

david
Posted 7/22/2012 7:17 PM (GMT 0)
thank you jonathan, actually, it means a lot to me. i appreciate any sincere support and encouragement, i am as human as the next guy, no superman or super hero on this side of the fence. venting helps sometimes, because there aren't any easy answers at this point.

david
Posted 7/22/2012 7:30 PM (GMT 0)
Thanks David.

Just trying to understand.

Are you nearing safe limits on the radiation because of the problems that happened during SRT. I'm asking because I had adj. Radiation and then 2 small - 1 time spot radiation. I wonder when they'll say to me that that's enough.

Thanks,
Jerry L.
Posted 7/22/2012 9:03 PM (GMT 0)
Jerry,

On the lifetime radiation limits, there is no set in stone number. A person would have to consider all types of radiation in their life, including dental, scans, x-rays, etc. In my case, I had 70 gys of old school radiation in 2000, then the 72 gys of SRT in 2009. My oncologist does not even want me to have anymore radiation based scans, unless they are absolutely vital for my well being. Because of the damage that both my major radiation bouts caused, especially the SRT that went foul, it's even more of an issue. Assuming that I ever had bone mets established, he doesn't feel its safe for me to even have "spot radiation" in such areas. These will be decisions that will have to be made when and if it becomes an issue. Would have to weigh out the risks at the time.

Radiation is still a good tool in fighting cancers, I would never deny that, but the problem is, both the good cells and the bad cells take a beating when radiation is used. So there is always that trade off to be considered.

With the damage that was done last time, I am at extreme high risk for secondary cancers in the areas of my colon, bladder, even lower kidneys, liver, and pancreas. We are still trying to find a safe way to check my colon, because somehow, it slipped the cracks over the years. I wished I had had a colonoscopy way back before the radiation damaged me. They feel a virtual scan there would be almost useless, and they are afraid of rectal wall damage with a conventional test.

I sure don't want to put myself at risk to take tests in those areas, in light of adding further damage to my list of damages, but on the other hand, it would a shame to have additional cancers growing undetected. If it were not for the extensive radiation damage, it would be easy to get the answers needed.

With you, Jerry, were the radiations you described the only major bouts of radiation that you have ever had to your knowledge?

david
Posted 7/22/2012 9:45 PM (GMT 0)
David,

Wow...it's like a a chess game isn't it?

Me---i've had just dental xrays leading up to my dx of Nov 2009. From there I've had the normal ct scans and bone scans. Also had a F18 Sodium Pet/CT bone scan a few weeks ago.

I've had adj radiation (39 times I think) + 2 seperate spot radiation each lasting 1 session.

Thanks,
JL
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