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Five years since diagnosis

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Posted 8/26/2012 6:31 AM (GMT 0)

I've been reading some of the posts tonight and I thought I'd do an update post. My last PSA at about the 4-1/2 year mark was <.05. As you can see in my signature this is after DaVinci and radiation.

We're so honest here so I guess I can just share some things I don't talk to other people about. I'm doing well if you just look at my stats, but not so well in other ways. All of a sudden, I've just started leaking urine at times. The bad thing is I don't even feel it. During the five years since dx I've been mostly continent, no pads, but sudden unexpected movements would cause small leakage, but I could feel it and sometimes could catch it and stop it.

To make matters worse, times are tough, really tough. My business is just about to the fail point. I've had financial problems that started after cancer and have just gotten worse over times. Several reasons - cost of cancer treatment (I have insurance, but I pay for it and the costs that it doesn't pay), bad economy, then local economy crashing big time, etc. Long story short - I can't pay my radiation bill, not even the payment plan I agreed to before radiation. Now, my urologist won't continue with me unless I can make the payments. I'm spread so thin and one step away from bankruptcy and so I refused to promise the doctor's bililng office that I could make the payments when I don't have one thing to base that promise on. He said he could refer me to another doctor.

I'm a businessman, at least currently. I can certainly understand the doctor's business action. But, I guess I'm just really hurt by this. I call him by his first name and consider him a friend. I felt like we went a little beyond Dr/patient relationship. I had written him a pretty lengthy letter expalining everything that had happened over the last five years that led me to the point of financial ruin. I really wasn't asking for anything from him, I just wanted him to know I wasn't a deadbeat. I have not heard from him at all; that's the part that really hurts. I've not been able to communicate with anybody but his billing office. I suppose I'll move on to another doctor, but I'm feeling a little lost at the prospect of starting over with a new doctor after all this time. 

So, now I've got a new continenence problem and have to start all over trying to build a new relationship that I can trust and don't have a clue where to go. I will not take him up on his offer of referral. That's the last thing I would do at this point. Oh well, just venting. I just need to put my big boy pants on get on with finding another urologist. 

Posted 8/26/2012 11:30 AM (GMT 0)
Sparky,

I do not know what to say, Cancer sucks and what it does to us all sucks too. I am really surprised that a doctor who you have a first name basis with will not work with you in your time of need. But like you said in the end he is just a business man too.  Have you tried reaching out to a local utoo or other PC support group for nothing more than some others to talk to about PC? I see from your bio that you live in Texas and we have several active HW members in Texas who may be able to reach out to you as well. We will be here for you as much as we can.

On the continence issues.  It is not uncommon for incontinence and even ED to develop a year or more after RT and I assume that is what has happened in your case. I am not an expert on this but I am sure others here will offer help from their experience.  Keep your head up and you will get through this, but please keep in touch.

Terry The Water Guy

Posted 8/26/2012 11:59 AM (GMT 0)
First, congrats on your great PSA score! I do not have any specific advice, but I know that you are a healthy, strong and brave man (whoever starts a business has guts, imho), and you will find a solution, a new path for your life! Wishing you good luck!
Posted 8/26/2012 6:21 PM (GMT 0)
Sparky,

If you are not already, have yountried to do your kegle excercises? I'm a year and a half out from surgery, but continue with e excercises. I still have my moments occasionaly though.

Also, walking and staying active would help to. Not sure of your situation.

WO
Posted 8/26/2012 7:06 PM (GMT 0)
Sorry to hear about your new incontinence problem. It sure sounds like a result of RT. So don't feel so bad about ending that relationship with the uro. Besides Keagels there might be some biofeedback machines that might help you but you don't have to find a doctor to do something extensive again like surgery or radiation. And honestly doctors don't really care why you can't pay your bill, they just push you to the side, I can tell you that. It is just a business to them. Assuming you still have insurance there must be doctors in your area that treat incontinence. I do realize what it's like to have health insurance yanked on you though. I quit a job back in June to go to another company with much better health insurance. The only problem is a 90 day waiting period, which ends October 1. In the mean time I've tried to sign up for Cobra but have been unable to do so due to "computer errors at time of election." Which means currently I have no insurance, my wife's medicines have run out and we will have to renew them  without insurance which is going to cost me at least a thousand dollars because she's on so many pills. What a crappy system. But at least this will end in a month. Perhaps when the new healthcare law takes effect in January of 2014 you may be able to get more affordable insurance and better access to a urologist. I pray that you do, god bless...
Posted 8/26/2012 10:12 PM (GMT 0)
Thanks all! As far as Koegels, I haven't done those in quite a while. That's another thing, I have not been good about keeping up the Koegels. Every time I visited the Dr. he would ask me about that. I would always be honest and tell him I haven't been very faithful to keep up the Koegels. He told me more than once that the incontinence would go away on its own but the Koegels would make it happen faster.

This is the same doctor that I questioned whether my slow rise in PSA warranted radiation yet and I got another opinion. The 2nd opinion at first told me that my Dr. might be jumping the gun a little. But after he called my Dr, then he told me to go ahead and do the radiation.

This is the same doctor that when talking about quality of life issues one day when I was still at .01, put me on a regimen of testostrone gel. I did that for 30 days. I was suspicious of that for a PC patient so I quit using it after the 30 days. I had been scheduled to come to my Dr's office and they were going to teach me to give myself testostrone injections. Before I went to that appointment I had to see my general practitioner about another issue and he told me that using testostrone would be like putting gasoline on a fire. You have to understand, my GP NEVER steps over the covering of another doctor. I was suprised that he said that so candidly. So I cancelled the testostrone appt. It wasn't but a few months after this that my PSA took the slight but steady rise.

I guess if you read my previous post and this one, what comes out under the surface is that I trusted my doctor and considered him a friend, but now I don't know if he handled my situation right. One thing that I always worried about is that he is super, super busy. Too many patients if you ask me. He would never remember simple things, like "Did we do any follow up radiation?" (This was before we did radiation)
I don't know, maybe I just expect too much from doctors, but I know this, .....I'm left with having trust issues now.

I will start doing Koegels again and I know I need to start walking again and eating healthier. I know all these things are the best things I can do. Lack of time has always been my enemy. If my eyes are open I've got something I should be doing toward my business. Well, that problem may be taking care of itself. Thanks for all the great suggestions and helps!

Posted 8/26/2012 11:19 PM (GMT 0)
I asked my URO in July to do a Testosterone test with my 90 day PSA blood draw and he refused as he was afraid that if I had low T I would want to go on T therapy. After I told him I was just curious and under no circumstances would I request any T therapy he relented and approved the test. His policy is no Testosterone therapy until a minimum of 5 years of undetectable PSA after a RP. BTW my T score was 409 so I do not need any T.

 

Posted 8/27/2012 11:23 AM (GMT 0)
Sorry to hear you're having a tough run of late. It is somewhat disappointing to read of your doc's attitude. Given he's made quite a bit out of your illness to date I would not think it was too much to expect a little understanding, especially since you took the trouble to advise him of your changed circumstances. Most of us were raised in a time where a doctor was more than a businessman and medicos were held almost universally in very high esteem, simply by nature of their profession and perceived humanity. My how times have changed. I am far from being a cynic but I am afraid that I view most medicos now as businessman whose business is the practice of medicine and it is a real cash cow. How sad that it has now come to this. I sincerely hope things pick up for you in the near future.
Bill
Posted 8/28/2012 4:23 AM (GMT 0)
Thanks Bill & everyone else too. I know things will pick up. I started my business out of nothing, I guess I can do it again. I know some aren't believers here but I am and I know who's in control and I'm sure glad it isn't me.
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