Latest update - 2/23

Sorry for the delayed update. I was expecting a good fight, but it never happened. I did hand the nurse a 2 page typed update from me. The doctor did read it, and then proceeded to spend 30 minutes calmly with me, taking the time to explain my situation, and to try to ease my concerns.

On the dripping issue, he said the culture came back with a really rare infection, one he had never seen before. I failed to write the name of it down. He is not certain why its going on, and it has to be limited to where my bladder neck is scarred closed, to the tip. There is no way anything can get past the blockage. He put me on an even stronger anti-biotic for the next 7 days, and hopes it has some positive effect. If it doesn't work, and I dread the thought, he said I may have to be circumcised. No male in my side of the family as ever been circumcised, going back to my grandfather. He said he will only do it, while the patient is completely put under. Said it would take 25-40 minutes. Would leave about 24 self dissolving sutures. He admitted, that it could be a pretty painful recovery, but the worse should be over in about 2 weeks. Hoping and praying it doesn't come down to this.

On the internal pain in my scrotum, loins, base of penis, etc. - he's not certain enough to dx. at this point. Said it could be still another deep infection, though he kind of discounted that. Or it could be fluid building up in my by-passed bladder, or it could be bladder cancer. As noted before, there is no easy or safe way, with all the radiation damage, for him to access my bladder. Said the risk of it not healing properly is high. Admitted that under present circumstances, I could have stage IV bladder cancer and never know until it spread. So for starters, he's going to run several contrasted CAT scans this Friday, and take it from there. Said even exploratory surgery from the outside in, could be very problematic. I asked him point blank, when didn't he take the bladder out back in 2010, when he had the chance. Said it was a judgment call on his part, he reasoned that there were high risks even six years ago, and that it only riskier now.

On my rising PSA, said the next 2 readings may be the determining tests. I didn't mention any preference at all for the next step, but he immediately recommended the possibility of 2-3 rounds of chemo, Taxotere (?) vs. HT. His PSA reading from last week, matched both the VA's and my own oncologist's readings. I will be getting a new one mid-March, to see if the rise is still increasing or not. Jury is out on that one too.

He has been my urologist for coming up on 9 years now, I still feel he's a good doctor, not perfect, and he did agree, knowing now how things have turned out, perhaps the bladder should have been removed. He told me he assisted a removal just a couple of weeks ago, with another patient who he said was about as badly damaged as I am from radiation. Took them 6 1/2 hours, and there were many complications. The guy ended up with both an Urostomy and a colostomy. I already have the one, and sure don't want the other. There will be no rush into major surgery - either by me or by my doctor. Going to proceed with caution.

So no firm dx. on anything, not quite yet. But hopefully nearer than I was. He did appear to be very empathetic for the coming up on 6 years of 24/7 moderate to severe chronic pain. He told me, unfortunately, that I may not have seen the worse of the radiation damage. Said that it may get even worse as it spreads, even though I am coming up on the 7 year mark from SRT. That prospect didn't go over well with me, but I would rather know the truth.

Will update again after I get the scan results, and see what this new rounds of meds do for me.

Thanks for the update. Glad the fellow was at least prepared for a frank discussion.

How are things with the new teeth? I know that's less important than the other issues, but just wondered.

Yesterday's update on Barbara is on the Lupus board.

Lets hope the scans can provide some answers.

Purg,

As always I feel for you having to go through all that you do. In your last post you mentioned... "What I wouldn't give to be able to go to John Hopkins and have a real group of doctor's trying to work together with all these clues and come up with a game plan."... Why don't you? I've seen it here and I believe that the best doctors make all the difference. Following you all these years it seems like you have been put off, had appointments delayed, had trouble being seen or scheduled for appointments, had different doctors assigned to you that had to be brought up on your history, and in general have not received the best of care. Where there is a will there is a way. Really. I know that I have had some expensive procedures done, but it seems like hospitals and doctors are willing to let you pay what you can per month, as long as you are paying. Get private insurance if needed. Maybe give up a car or a cruise or raise money on 'go fund me'. I think you need to give yourself the best shot you can to solve your issues and the pain that you endure rather that live the rest of your life as you are now. You're worth it and you deserve it.

I wish you well.

G6

David. Thanks for the update. You have really gone through the mill, so to speak. I too have been getting a little deeper into the seemingly chronic stuff. Last April I had my left kidney, left ureter and bladder cuff removed. I have to go to the VA hospital in Danville, IL at three month intervals apparently for the rest of my days. For the last three visits, a cytology has indicated Atypical cells. Each time, after deeper analysis, they were all FOUND TO BE benign.
However, next Tuesday the VA Urologist wants me to have a bladder biopsy in an effort to see what the heck is going on. He did advise me that my having some Atypical does not necessarily mean cancerous cells. I hope my brachytherapy of over five years ago was not the direct cause of the cancerous mass in my ureter which caused the loss of my kidney. I can sympathize with you for all you have been going through and hope your next procedure will give you some GOOD well deserved relief. Prayers being said for you BROTHER.

erbob - your story makes mine look pale. you have been through the wringer yourself, and you are still in the fight, and if not mistaken, you have 16 years of life on me. my hat is off to you in your fight.

gleason6 - some of your remarks could be taken in the wrong way. especially about the cars and cruises. we are not talking apples to apples here. I am 100% covered by Medicare, and 100% covered by the VA. not in any position to take on additional insurance, and even if I did, there would be overcoverages by having more than one "carrier". 2 coverages doesn't equate to 200% coverage. there is also severe travel limitations on my end, even planning a 4 hour car trip for me, is a major event, thus why I don't get to see my daughter often in Charleston, a long day of airport waiting, layovers, flight time is difficult for me. just wish I could find one neutral doctor, that could take what the others have found in their own specialties, and knit them together, I am not convinced that all the dots are being connected.

and to every one else, thanks for the continual support, well appreciated

tomorrow is Friday, have to be at the hospital, after fasting, at 3 PM, to begin these new rounds of contrasted testing. don't look forward to guzzling down more contrasts, and more IV's, but I want some good scans. the pain in my bladder neck and groin area has been intense the past couple of days. so far, the new antibiotic for the "drip" hasn't done a thing, but I am only about half way through the bottle of pills. really hoping it works, I do not want to be circumcised at my age.

All I can say is your story makes me feel fortunate by comparison. Thanks for the update and I salute you for your fortitude!
Bob

It's incredible that in this day and age of modern medicine you have gone eight years with, as you say, "No Answers".

David,

I'm sorry I've not been around much to support you. You have, however, been on my mind daily. I hate that things have become so serious for you. Why, some of us must suffer so I don't understand.

My issues have rapidly declined since January 1st . Basically, my Doctors are uncertain what to do with me. My daughter is putting updates in the lupus forum. Straight out I'm back in the ICU and if we can't stop the progression of what's happening in my lungs I may die in near future. The doctors are contacting Hopkins, Mayo, and Cleveland clinics for more advice. Also, they are discussing getting me on the lung transplant list ASAP.

I don't want take over your thread but I wanted you know i get where you are coming from. I get wanting to throw up your hands and quit I wasn't showing any signs of this lung stuff 6 months ago. In January my nose dive started, sounds like you've done the same. At times I don't even want the Doctors to walk into my room. Keep on them David, don't let put you off, remember we promised each other to hang on and keep fighting.

We will share the lifesaver that's been thrown overboard for us, okay. Hang on tight David we will get past all this. I'll try to continue to post as I'm able.

Hugs,
Barbara Lee

Rest in Peace Barbara, you were always there for your friend David, even when you were not well yourself.

I remember Barbara most for her kindness.

Barbara passed a few days after she wrote this post. It might have been her last post at Healing Well.

Barbara was a very good friend to all that she talked with, she will be missed, Sympathies and prayers to her family and prayers to you David...

I am so sad to hear this news about Barbara. I know how close David (Purgatory) was to her. May she rest in peace. I have sent a postcard to David as I am concerned that he hasn't posted in nearly 3 weeks. An, I know you share concern as well.

erbob, how sad to hear this news. You seem very determine to fight the battle, and my prayers go out to you. May God bless you.

Thank you, Jim!