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Posted 3/10/2010 2:50 AM (GMT 0)
David:

I know I've said my piece on your situation, and I decided not to say any more.

But, it is heartbreaking reading what you are going through. Your latest thread with the testing, well, it just doesn't sound that good. Hopefully it is just a case of swelling that needs to subside before you see improvement. Man, I sure HOPE that's the case. I would like nothing better than to read some good news from your end.

Okay, that being said, feel free to jump down my throat, but CAN YOU BE MORE SPECIFIC about A WHOLE NEW APPROACH?

You've said that time and again, but I have no idea what that means. Actually, I do have an idea: it means doing something different.

Sooo... I reiterate: how about seeking some help OUTSIDE of your current circle of doctors? You can defend them all you want. I'm sure they are good doctors, wonderful people, etc. etc. etc. I'm also sure they are checking with other experts. But, isn't it time for YOU to check with other experts?

I will also admit that it is easy for me to spout off. I know you are exhausted and maybe it is too much asking you to go elsewhere.

But... that would be "a whole new approach."

Good luck friend.

Mel

Posted 3/10/2010 3:02 AM (GMT 0)
Mel, I know you are meaning well here in this post of yours, but I don't understand why you, and some others here that I don't need to name, assumed that other ideas, approaches, and doctors aren't being talked about and discussed on my end. These kind of remarks tend to make me feel like I am suppose to be some kind of fool or idiot, not sure I get the connection.

For starters, I have a good new contact now in another state, a surgeon, that specializes in chronic strictures and blockages. When I meet with my uro next weeks, I am going to pass the contact on to him and ask him to talk to him and see what other options are out there.

I have made it abuntantly clear, that I am not going to submitt to another one of the corrective surgeries if this one fails, now, or in the future. After 5 attempts, its obvious that it is a chronic problem. Some men with stricture problems are luckier than me, it's a one time shot, either through dialation or with a single corrective surgery, their problem is solved. I am not in that group.

My uro is suppose to report to me, what he found out from his college in Atlanta, I am interested in what he found out.

There are at least two other surgical approaches that can be done ,but both of them are risky as to making me perm. incontinent, a risk I am not willing to take, and enough risk where my own surgeon doesn't want to do them either.

The other option, is that I may have to accept the fact, that aside from constant dialations, which for me never last long, I may have to resign myself to being on a perm. suprapubic catheter. I don't want that either by choice, but sometimes people have to deal with the cards they are given.

For all my critics, I haven't been given a single alternative solution to this situation. And if one researches it as much as I have in the past year, there are only X amounts of possible solutions out there, as the pool of chronic sufferers of strictures and blockages is a small pool at best.

So Mel, since you brought it up, what is your solution?

David in SC
Posted 3/10/2010 3:22 AM (GMT 0)

David:

If I had THE solution, I'd be a brilliant doctor.

But, my SUGGESTION is for you to write a synopsis of your situation and send it to the Head of Urology at Mayo, Hopkins, Cleveland Clinic, Umich,  and maybe a few more based on the hospital ratings (I think US News and World Reports rates them).

See if you can get a consultation with them. NOT your doctor talking to someone and getting back to you. I mean, depending on the responses, possibly having a face-to-face CONSULTATION. I know you don't want another surgery. Realistically, there might be an expert out there who has an idea or experience or something that will work (realistically, I would assume it is surgical). Maybe there is some kind of medication that would help retard the growth of scar tissue that seems to be a plague for you. There might be something out there that is not quite approved but is working (just like the PCA-3 test for PC). You won't know about it, but some expert might.

You have subjected yourself to so many local procedures/surgeries.

Okay, you asked what I thought. That's my idea.

I realize there are financial issues and, more likely, just the effort required to go somewhere else in your exhausted state. But, that's my idea.

Mel

Posted 3/10/2010 3:36 AM (GMT 0)
Unless you or the magic leprechan has a pot of gold, don't have the means to go off consulting face to face with others, not unless it was reasonably near to me.

From what I understand, there is no pill or pharmacutical approach to the problem. They really don't know why some people over-scar and others don't, there is no definitive answer to that aspect of it. When you look at the tiny dimensions in a normal bladder neck opening and the typical size of the urethra at that juncture, there's not much room if any, for anything out of the normal to be there. It's been proven in my case, after two of my corrective surgeries, that this tiny opening can be re-closed in as little as a month after surgery, even laser surgery which has really clean edges and cauterizes the area, which in theory should make it harder to scar. But is scars over regardless.

I dont think I ever mentioned this, except to my dr, but I have psorasis bad at times, use to be terrible a few years ago, then it went away, and now its coming back. To this day, they really don't understand it or how it works, and for most people, there is no cure. But it works in a similar way, everyday ,we lose skin, and replace skin, in psoorasis, it gets the wrong signal, and in the affected spots, it keeps trying to grow skin cells over and over and over again, until they stack up and scale off, yes ugly I know.

One of my radiation oncologists and a medical oncologist are puzzled by that as well, and wonder if its not another strange signal the body is getting in the same way that some cancers start. Just a theory.
Posted 3/10/2010 4:05 AM (GMT 0)
David,

I appreciate Mel's expression of care and concern for you. I think many have wondered along the same lines, but with all of your pain and suffering, no one wants to add to your already heavy load.

I find it curious that you would talk about enduring many years of potential pain, or even a permanent catheter with the added risk for infection, etc, instead of risking incontinence and the ability to urinate normally. You are talikng to a bunch of men who all risked permanent incontinence for a cure from PC. Many reading this have permanent or at least long term incontinence, As you well know, there are cures for that as well.

We all , to a man, hurt along with you. There are no critics or people with anything but good intentions for you. Please din't take it personally. If it was a monetary issue alone, I would bet a $100 that you would find a mailbox full of envelopes with contributions to get you the help you need, if it exists.

I know it was hard for Mel to write that post, as it is hard for me as well. Just take it as a sign of caring and respect for you.

Continued improvement wishes to you my friend.
Posted 3/10/2010 4:32 AM (GMT 0)
Goodlife, I truly respect ,and appreciate all the care toward me and my endless problems. Trust me, I get sick of it as much as those hearing about it, lol.

My other alternative, is to simply not update my situation. That wouldnt really be my style, because in our world (PC), especially for newcomers, I think its critically important, that men understand the good and the bad. For those that jump into a primary treatment, its kind of hard to understand and comprehend the side effects and complications involved, particually we who underwent surgery.

I knew and expected issues with both ED and incontinence, and prior to surgery, my wife and I came to terms that I may be dealing with both issues short or long term, or even forever. With my strong Gleason 7, my age, and my velocity issues, we decided it was the best shot at curing or slowing down the beast. I still stick by that.

What new guys need to know, is that PC is a game that doesn't play fair. I was blessed with no ED, I never say that to rub it in, I feel for every man that deals with that and learns a new life of sex with pumps, drugs, and/or needles. I expected to be among them, I still consider it some kind of miracle. Incontinence for me in the normal sense of the word was very minimal, but now I realize, its because I had a stricture blockage issue going on right from the night of my main surgery. I have the opposite problem, instead of peeing too much, or dripping or leaking, I simply block up. So I feel for every brother here that has to live with long term incontinence, and for those that have to have slings installed and other devices.

The longer I am in this battle, the more wisdom I see for telling our new brothers, that if they have a low grade case, most of us agree on what that means, gleason 6, no serious velocity issue, no family history, 1-2 cores, low per cent cancer contained, etc, that they really ,really should consider some form of AS.

Many of us had to have surgery, it truly was the best choice with the most hope. But for those with multiple options, again, directing this to our newer brothers, then they should think through what side effects and changes in quality of life issues really mean long term.

I had admitted this freely here at HW, my worse crime is that I seriously underestimated the quirkiness and nastiness that PC can bring upon us, and the fact that there is no "normal" in almost any aspect of dealing with it.

Learn, learn, learn. Think, think, think. Then decide, in that order.

Thanks for your continued care and concern. This is my 161st day with a continuous catheter, my bladder neck aches like hell from todays "testing", so yes, I get a little cranky, and a little touchy and sometimes I tend to take things personal, since we dont have the privilge in our brotherhood of sitting face to face. But I appreciate one and all, and I really am ok to agree to disagree with people.

David in SC
Posted 3/10/2010 2:01 PM (GMT 0)
David, you are doing all that you can do and then some. I for one would have succumbed to the cliche "It is what it is" long ago. Keep the faith and do keep posting your experience both good and bad for not only those of us as surviviors, but for those that are recently diagnosed. Your story is indeed rare amoungst us, but your writings are with emotion and compassion for everyone that that face this disease and for their families. Never once have I read anywhere in any of your posts any signs of despair or frailty. You consistently display hope and strength and that is what I would hope others see in you as well. We all relate to our surroundings in one way or another. You are a part of my PCa world albeit from a distance both personal and physical, but just the same when I read your posts I do indeed relate.

For those that question the path that you have undertaken wish you no harm and are not insensitive to your plight, but were just well meaning expressions of sympathy and love for you.

Keep the faith my PCa brother.
Posted 3/10/2010 2:21 PM (GMT 0)
Les, I don't think I could have expressed myself any more eloquently

So..............I'll just say--Ditto!

Arnie in DE

Posted 3/10/2010 2:21 PM (GMT 0)
Les, thank you. I am about to start another morning of tests before I have to go out for the day. Anxious to see if I can make any more progress. Your's is a unique story too, and inspiring one. There are many, many unique stories here at HW. I certainly don't have a monopoly on trials and tribualations, each of us have different twists and turns, that's for sure
Posted 3/10/2010 2:30 PM (GMT 0)
<<<<<< GROUP HUG >>>>>>

Posted 3/10/2010 3:00 PM (GMT 0)

Very good posts in this thread.

David -- it still would not hurt to write those letters. Maybe someone can do a phone consultation with you. Hey, I'm just suggesting it. Perhaps someone has done some research in this area that you are not aware of.

David -- this thread was very hard for me to start, so I'm glad you took it in the spirit intended.

I wish I had half your class in dealing with this disease and its complications.

Mel

Posted 3/10/2010 4:44 PM (GMT 0)
As someone who also has what appears to be a chronic stricture problem and is scheduled for surgery tomorrow, I find the "know it all" attitudes of some of our brothers disturbing. The problem is bad enough without second guessing. My Uro has consulted with others and there will be more consults in the future, but the bottom line so far is that the next tier of surgical steps are risky and could cause more severe problems. For the men that can afford to "shop around" and consult with the "best" doctors in the country, I say more power to you. But take a hard look at the results of our brothers here who have had their surgeries done by the "best" and you will see the same percentage of results - incontinence and ED, the need for follow-up radiation, etc. To think that a man who has been thru as much as David has not looked at all the options is ridiculous and demeaning to him. There is no magical cure for this problem and no one specialist out their who is the genius that can fix all of us. I have confidence in the doctors I am dealing with as I am sure David does with his. I post here about my problem because for some strange reason it makes me feel better, especially when I find someone who is going through similar problems. With each bladder spasm that turns me white with pain, I know that David has had many more than me. As I suffer with another catheter, I know that David has had more than a dozen. For those that know of a surgeon who has successfully treated chronic strictures, pass on the info. Otherwise, don't insult the intelligence of those of us who are suffering with this problem. Enough said. Hang in there David. Squid.
Posted 3/10/2010 4:55 PM (GMT 0)

Squid:

I suspect your note was directed at me.

I honestly think that writing letters to the best places was a good suggestion. This is hardly a "know it all" attitude. If I "knew" of a specific expert, I would certainly impart that knowledge.

We are all dealing with our devils here and we are all frustrated in our own ways.  We are on the same side.

Creating a war here would be the furthest thing from my mind. In fact, I did post this with a lot of hesitation. There is no need to spring to anyone's defense as there was no attack, just a suggestion.

I once advised a friend who was repeatedly upset about some work issues to "caress an idea; don't strangle it."

It's time for me to take that advice. I do agree with your two words: "enough said."

Mel

Posted 3/10/2010 7:01 PM (GMT 0)
David,
FYI, Charles Maac of USTOO Witchita KA web site has compliled a list of specialists for every phase of PC. I remember he listed some specialists in strictures. I'm not pushing anythng but it is a resource you can use.
JT
Posted 3/10/2010 8:35 PM (GMT 0)
squid, thank you, you actually said a lot of things I was thinking but didn't say, not many of us with this as a chronic problem and you would almost have to walk a mile or how about a full day in our shoes, knowing there is no easy answer. you have been feeling some of the hurt, I have been feeling, so you understand first hand. appreciate that, and my heart goes out to a fellow sufferer. i am back home, cath plug off, and feeling miserable, already a lot of pressure pains, just had another intense spasm, so not a real fun guy right this second, but I need to endure today's test period to see if there can be some natural improvement.

johnt, thanks for the lead, i will check that source out, because if there is a next time, and i am already afraid it will be needed, its not going to be done "business as usual" as the other 5 attempts. i will see what names pop up on that list and see if i can make a contact.

david in sc
Posted 3/10/2010 8:38 PM (GMT 0)
Squid, I am another who developed strictures following robotic surgery. Went through 4-5 procedures (hard dilation, cystos with laser under general anesthsia, numerous foley and SP caths) before the Urology group I was seeing said we can't fix you and recommended referral to a Doc who is a specialist in strictures and surgical repair. After 9 months of dealing with this problem he fixed me and it has been over a year. This doc is includung me in a study of patients to share his treatment outcomes with other Urologists. I have shared the name of this doc off group with David and would be happy to do so with you or anyone else who is suffering from this terrible complication. Just let me know. Kbars 

 

Posted 3/10/2010 8:57 PM (GMT 0)
kbars, i have already printed off and saved that email, thanks again.

what was done to you the last time that seemed to have worked so far?

david in sc
Posted 3/10/2010 9:17 PM (GMT 0)
Kbars, I would also appreciate the name of your doctor. thnx, Squid.
Posted 3/10/2010 11:04 PM (GMT 0)
David: Finely a post that makes sence of things. I must say I agree with the post.

Your Cajun Brother
Jeff
Posted 3/11/2010 12:06 AM (GMT 0)
Which post in particular Jeff? lol. Been several good inputs here. Bro. Squid, unfortunately, may be becoming "purgatory 2" with a very similar pathway to these problems on a chronic basis. As men consider surgery in particular, this is one more risk item that must be considered, I realize it's rare by % numbers, but if you are dealing with it, it's quite a "quality of life issue", as I am sure Bro. Squid will testify.

Perhaps will see you on the Chat later, I hope. Need a good dose of Cajun humor at this point in my day. Go Saints.
Posted 3/11/2010 1:29 AM (GMT 0)
It's definitely a quality of life issue. Nothing like having to walk around with a bag attached to your body. It is especially lousy after getting good post-surgery PSA results and seeing a glimmer of hope in getting rid of the cancer. I've had my current cath for 9 days and would love to get rid of it. Unfortunately, I will be under anesthesia when they take it out and replace it. If I knew what I know now about the stricture problem and what incontinence and ED are really like, surgery might not have been my first choice. Not good to second guess, but what can you do. I wish we could flash forward 5-10 years when there will probably be several non-surgical/non-radiation cures for PCa. I tell my 36 year old son who is now worried about PCa because of mine, that hopefully he will never have to consider what we go thru nowadays. Squid.
Posted 3/11/2010 1:36 AM (GMT 0)
squid,

my oldest son is 32, and he already has his own fears and worry about the remote possibility of PC. he's going to get his first psa done at his yearly physical this year, if nothing else, to establish an early baseline. it's bad enough its in my life, its a shame my son's now have to think about it at such an early age.

our stricture problems are unique and it would not have been possible to predict in advance. with my numbers, surgery still made the best sense at my age, so i dont allow myself to second guess that decision. it's a shame, this time a year ago, i was well on my way to a good recovery, had healed up well from my open surgery, was 100% dry, and not a trace of ED, was hoping this was all a nightmare in my past. but my recurrance and these stricture problems keep my pc on the front burner.

david
Posted 3/11/2010 7:37 AM (GMT 0)
Hi David, is it possible that the IMRT has aggravated your condition? after I completed mine it was found that my bowel had been scarred in that area, makes me mad that I went through all that, and my PSA dropped not one bit, hope you have a better outcome and the pain eases soon.

Regards Mal.
Posted 3/11/2010 2:36 PM (GMT 0)
mal, my uro definitely feels the IMRT has taken a bad problem and made it worse, and thus making it more difficult to deal with and/or correct. he was not for me going through srt, he was worried about what collateral damage might be done.

i understand your feelings on the treatments, trust me. hope you continue to hang in there too, brother.

david in sc
Posted 3/11/2010 8:20 PM (GMT 0)
Squid, Send me an e-mail to [email protected] and I will send you the specialist contact info. Kelly 
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