Ugh! Health issues. Bladder cancer not yet resolved.

diferg said:
hi Bill , I had radical prostatectomy in 2007. Everything went fine . (or as fine as it could) Long story short 15 years later PSA has been climbing slowly for a few years. All kinds of tests couldn't find anything. Finaly found the little culprit it was about 3 mm and PSA was about 6.5. Had "Laser knife" treatment for 6 weeks in April / May treatments are absolutely painless! each one takes about 15 minutes a day 5 days a week. side effects were being gasey and loose stool . 3 months later Psa tested at 0.1 and doctors expect it will continue to go down to 0.0. hope this is what they have in mind for you. Did ride bike to treatments. Becoming middle aged like we are is not for sissies!
Click to expand...
Thanks for the report. They told me 6 weeks of recuperation, but I'm only taking 3 weeks off work.
 
I think you will be fine! the recuperation is to allow Everything to return to normal. but most of that time you will feel and function very well. Best Wishes and Prayers for you!
dan
 
George, sorry to hear about this and hoping you find appropriate treatment ASAP. Good luck and prayers logged.
 
Sent Bill's info to my Urologist office, haven't heard back yet. Also waiting for call back from the VA.

Bill, best wishes for success on your Prostate treatment. I hope to avoid that complication. So far, so good.
 
George said:
Sent Bill's info to my Urologist office, haven't heard back yet. Also waiting for call back from the VA.

Bill, best wishes for success on your Prostate treatment. I hope to avoid that complication. So far, so good.
Click to expand...
Good luck with your cancer and the VA. Any way you can check out other avenues, such as a medical school or similar setting? Access to BCG may be spotty.
 
The Oncologist who lives across the street is searching solutions for me. Not my doctor, just a good neighbor.

Va hospital Prescott can't source the med. Va hospital in Las Vegas has it but there is no cooperation between VA regions. VA hospital in Phoenix may have it and they are in the same region. Ongoing research.

Tu runs. Out there are many similar drugs with varying levels of success. One suggestion is to go with early Cystectomy (bladder removal) to alleviate the chances of reoccurrence. Fingers still crossed.
 
George said:
The Oncologist who lives across the street is searching solutions for me. Not my doctor, just a good neighbor.

Va hospital Prescott can't source the med. Va hospital in Las Vegas has it but there is no cooperation between VA regions. VA hospital in Phoenix may have it and they are in the same region. Ongoing research.

Tu runs. Out there are many similar drugs with varying levels of success. One suggestion is to go with early Cystectomy (bladder removal) to alleviate the chances of reoccurrence. Fingers still crossed.
Click to expand...
If you don't have any muscle invasion, cystectomy seems pretty radical. The regimen that I'm on is off-label, which may be one reason the VA doesn't use it, but lots of meds are used off-label, when studies show they work. Can the VA refer you to somewhere else (preferably within reasonable driving distance) since they don't seem to be able to provide you with definitive treatment, or do you have to do all the research yourself?
 
George said:
One suggestion is to go with early Cystectomy (bladder removal) to alleviate the chances of reoccurrence. Fingers still crossed.
Click to expand...

George, a close friend of mine has had this done. There is a doctor in SoCal, I think at USC, that does something called a de-novo bladder in which he removes the diseased bladder builds a completely new one using a section of colon or small intestine tissue I believe. Evidently he is the only doctor or one of a very few doing this procedure. My friend is doing really well for 2-3 years now and remains clean of the cancer. If you want I can get the information from my friend, who incidentally is moving to Chandler AZ at the end of this month (Sept) and put you in touch with him if he agrees.
 
wjbertrand said:
George, a close friend of mine has had this done. There is a doctor in SoCal, I think at USC, that does something called a de-novo bladder in which he removes the diseased bladder builds a completely new one using a section of colon or small intestine tissue I believe. Evidently he is the only doctor or one of a very few doing this procedure. My friend is doing really well for 2-3 years now and remains clean of the cancer. If you want I can get the information from my friend, who incidentally is moving to Chandler AZ at the end of this month (Sept) and put you in touch with him if he agrees.
Click to expand...

I've read of this procedure. Still hoping to avoid anything ridicule. Disappointed my extended medical team hasn't suggested a solution to the med shortage. Apparently BCG not as rare as first thought. I'll update as info surfaces.
 
docw1 said:
If you don't have any muscle invasion, cystectomy seems pretty radical. The regimen that I'm on is off-label, which may be one reason the VA doesn't use it, but lots of meds are used off-label, when studies show they work. Can the VA refer you to somewhere else (preferably within reasonable driving distance) since they don't seem to be able to provide you with definitive treatment, or do you have to do all the research yourself?
Click to expand...

So far, I'm doing my own research. Plus my Oncologist neighbor is trying to help. Most disappointed in the VA not cooperating across regions. And my Urologist won't (so far) consider any off label.
 
George said:
I've read of this procedure. Still hoping to avoid anything ridicule. Disappointed my extended medical team hasn't suggested a solution to the med shortage. Apparently BCG not as rare as first thought. I'll update as info surfaces.
Click to expand...

OK, let me know if things change. My friend is also willing to reach out regarding his experience if needed/desired. Take care and hoping for the right outcome.
 
(Mild hijack, but related.)
I've just been diagnosed with early prostate cancer, fully treatable / curable.
Doc is leaning toward radiation, 29 to 39 treatments, going 5 days / week. I'm preferring surgery, for several reasons.
So I'm doing my due diligence, not being obstinate, but let's face it-- who is more interested, or more directly impacted by the procedures, the docs, or me?
Many patients are too trusting of "professionals", and don't take responsibility for themselves, to the point of giving over complete control and authority to someone they hardly even know.
I didn't know this guy before being referred to him after the diagnosis. It's not my nature to accept anything much, without asking questions.
I'm still deciding, but also still leaning towards surgery.
To be determined...
 
Sadlsor said:
(Mild hijack, but related.)
I've just been diagnosed with early prostate cancer, fully treatable / curable.
Doc is leaning toward radiation, 29 to 39 treatments, going 5 days / week. I'm preferring surgery, for several reasons.
So I'm doing my due diligence, not being obstinate, but let's face it-- who is more interested, or more directly impacted by the procedures, the docs, or me?
Many patients are too trusting of "professionals", and don't take responsibility for themselves, to the point of giving over complete control and authority to someone they hardly even know.
I didn't know this guy before being referred to him after the diagnosis. It's not my nature to accept anything much, without asking questions.
I'm still deciding, but also still leaning towards surgery.
To be determined...
Click to expand...
Well, one can do surgery, radiation (either external beam or implanted) or do active surveillance (watching, waitng and testing-not all prostate cancers progress). Depending on how advanced the cancer is, there are arguments for each. One argument is to do the surgery first, and then one could always do radiation, if needed later.
doing surgery after radiation could be problematic do to scarring from the radiation. I have friends who have had surgery and those who have had radiation. The one with surgery had a lot of problems with incontinence which is one of the big complications of the procedure, but can usually, eventually be controlled. Surgery and radiation both will probably lead to impotence of some degree, but at our age, that may or may not be a big thing. I was leaning to radiation first with mine, and I talked with a radiation oncologist, but he didn't feel he could shape the radiation to fully reach all the cancer that was visible on the MRI and with bladder cancer also, it looks like the best course is surgery
 
No direct experience with prostate cancer but my BIL had radiation implant with (so far)100% success. He's younger than me and this was a few years back.

Also been told, by a proctologist, late life prostate cancer is generally such slow growth, you'll pro6die of something else.

Latest news on my bladder cancer, I can transfer my VA care to Las Vegas where I can get the TICE BCG. Gotta wait a couple weeks til after my Prescott audiology appointment on 10-6. In general, progress is slow but continuous.
 
George said:
No direct experience with prostate cancer but my BIL had radiation implant with (so far)100% success. He's younger than me and this was a few years back.

Also been told, by a proctologist, late life prostate cancer is generally such slow growth, you'll pro6die of something else.

Latest news on my bladder cancer, I can transfer my VA care to Las Vegas where I can get the TICE BCG. Gotta wait a couple weeks til after my Prescott audiology appointment on 10-6. In general, progress is slow but continuous.
Click to expand...
Sounds good. Chances are high that will take care of it. Before I started my regimen, my urologist did another cystoscopy with Cysview, an agent that attaches to abnormal cells like cancer cells, then it fluoresces, and he can then do another TURBT to check for small areas of cancer. Don't know if you had that yet. Good luck
 
George said:
Also been told, by a proctologist, late life prostate cancer is generally such slow growth, you'll pro6die of something else.
Click to expand...
yeah, that's what multiple urologists have told me over the years too. Sadlsor, don't rush to do any treatments until you've had a chance to get multiple opinions on your options, prostate cancer is something that a lot of people just live with because the cures can sometimes be worse than the disease.
 
You must log in or register to reply here.
Back
Top Bottom