Regrets After Prostate Surgery (NYT)

[vseverin (imported)]

I had a prostatectomy one year ago. I got a PSA test after my friend was diagnosed and it came in at 12, which is high. He did a lot of research ahead of me and went to City of Hope in LA to one of the top da Vinci surgeons in the country.

I also did due diligence and met with local radiologists and surgeons. Based on what I learned, and my friend's results, I went to the same surgeon.

My friend has had no sexual problems almost from the beginning of recovery, and is still doing well. I, on the other hand, felt like someone pulled the plug on Mr. Willie. Things are slowly gettng better, but probably will never by the way it was. I've heard different odds of major ED problems with surgery, but my local urologist said it's about 50-50.

Anyway, I'm alive, still taking PSA tests and have "my bags packed" for external beam radiation if the number goes above undetectible. In fact, some urologists are now advising radiation after surgery without detectible PSA, which makes me wonder if I should have started with radiation in the first place, and skipped the surgery. There's no consensus on how to treat PC, so it's really important to do your own research.,

For those who mistrust the medical establishment, and want to try alternatives, I say good luck. This is usually a slow growing cancer, so there's usually time to think about it. But, as one doc told me "prostate cancer loves bone". Once it shows up on a bone scan, surgery is not an option, from what I understand. Then you're looking at a chronic condition, with the goal of pain management and hopes of a new cure.

[nullorchis (imported)]

My dad (now deceased) has his prostate and testicles removed due to cancer. So it is a subject I am aware of too.

According to : http://www.cancernews.com/data/Article/225.asp

quote:

Impotence (or Erectile Dysfunction, ED) is the other principal issue that commonly affects quality of life after prostatectomy. Most men experience ED early after prostatectomy. Erections are typically poor in the first few months after prostatectomy and recover variably thereafter, depending on factors such as baseline sexual function, patient age, and use of nerve-sparing surgical technique. Even after nerve-sparing surgery, however, erection recovery can take months to years. Erections can be improved with medications such as Viagra, MUSE (a urethral suppository), caverject (injectible prostaglandin), or vacuum pump devices6. Although most men in their late 60’s or older do not recover quality erections comparable to their pre-treatment baseline, many are able to either adapt their sexual activity or use medications to maintain an adequate level of sexual functioning. On the other hand, the sexual recovery outlook for younger men who undergo a nerve-sparing procedure is more favorable than for older men: we and others have found that many men in their 40’s and 50’s can recover erections suitable for intercourse if they undergo nerve-sparing surgery as described by Walsh. However, only select centers with high volume surgical expertise have shown such favorable sexual recovery among their patients after nerve-sparing prostatectomy. unquote.

Note: No mention that you loose your sexual urges or your libido. You may be horney but can't do anything about it. In this case medications that reduce testosterone can be a sort of good thing, if managed well.

Even if you choose to not have the prostate removed, if there is evidence of cancer, you are going to need to take testosterone reducing drugs, as testosterone only feeds the cancer. (so to speak). So even without an operation, you will loose libido, erections, etc.

Best hope is to have nerve-sparing surgery, and then once cancer is no longer detected, start on a libido restoration program (if that's what you wanted).

Otherwise, start on a libido reduction program.

[John Sheraton (imported)]

vseverin, the hospital you went to is one of the www.nccn.org clinics where you should get the best of the best medical attention. You did not mention your Gleason Score, which with a PSA of 12 could have directed you to the surgery or to radiation, specifically Seeds. My own decision was based on the Seeds since it is the least intrusive approach.

I was interested in your decision making such as should have skipped the surgery in favor of starting with radiaiton, and the doctor who said prostate cancer loves bones which resounds like conversations from the ugly thug urologist who leur guys into unnecessary medical procedures leaving them with ED etc.

Though as you say there is no consensus on how to treat prostate cancer since each case is different, it seems to me there are some basic approaches in well managed clinics like the one you attended where there is a general consensus to successful remedial actions nationwide. In my case, my PSA has remained at less than .05 and nobody has suggested any possible radiation which would be appropriate if your PSA went above 4 again indicating it was spreading. The ED is no fun, is improving, though it has taken some of the Versitility out of my gamesmanship. But, I did get an extra four years with Watchful Waiting when I switched to the NCCN clinic. Take care.

[vseverin (imported)]

John, Thanks for your observations.

I was just musing about other options I could have taken. From the surgery I had a Gleason of 4+3, while my initial biopsy was 3+4, so the cancer was more aggressive than originally thought. Also, I had positive margins in the post surgical biopsy.

So, with the PSA of 12-13, Gleason 7, and positive margins, my surgeon recommended immediate followup with external beam radiation. Apparently there is a debate going on in the PC medical community about this. My urologist in the Bay Area is telling me that it's OK to go with the currently accepted protocol of no more treatment unless testing shows detectable PSA.

I'm glad I've had a year to heal without adding radiation to the process. There are odds I may have to deal with this in the future, but I haven't heard about any increased mortality from waiting, so I'm happy to wait. And as another doc put it, "you could be cured."

I thought about the seeds, but was influenced by my friend who had excellent results at City of Hope. I'd be interested to know if you had external beam, in addition to the seeds?

COH is very good facility. I did most of the preliminaries - biopsy, multiple PSA's - locally, then flew to LA to meet the surgeon and schedule the surgery. My local guy does Da vinci too, two or three prostatectomies per week in addition to other urological surgeries. The COH surgeon only does prostatectomies, and I think I was number two of four on the day of my surgery. Given the complexity of the involved, and my desire to get the best "nerve sparing" procedure, I went with the high volume surgeon. Luckily,my local urologist has no problem doing the followup.

[John Sheraton (imported)]

vesverin, I had the Seeds with no radiation follow-up, three years ago. I appear cured. I imagine there could be a additional radiation requirement if necessary. You apparently do not necesssitate additional radiation. And, that's the type of consultation you get from a COH type clinic -- excellent medical recommendations vs that from local thug-type urologist who, to keep you a billing center, would put you through radiation with that followed up hormone treatments. In this light, that sounds rediculous, but, without a COH NCCN clinic environment, tens of thousands of men have been dragged through unnecessary and devistating lifestyle reprocustions.

You sound good, confident, and healthy. I am too, by accidently walking into a NCCN clinic

where they practice medicine,

having consulted with eight other thug type urologist on the East coast. Good luck to you and take care.

[vseverin (imported)]

John, I think my story is a little convoluted. In fact my surgeon at City of Hope was the one who recommended followup radiation. This seems to be based on some new thinking about the benefits of radiation for surgery patients with certain risk factors.

My local urologist has been nothing but conservative. He's supporting me monitoring PSA without additional treatment, and advising about the ED issues. And I'm very glad that he had no problem/ego doing followup, even though he does the Da vinci surgery himself.

The "thug" who made the comment about PC and bone was a retired urologist who talked to my PC support group. He had some useful information but wasn't totally up to date.

[Hardball (imported)]

PSA tests and robotic surgery saved my life and may have cured my cancer. Here is my analysis. 1) I was given annual exams, work-related, by Dr. Longfinger, this is the first test. 2) Based on that I started being tested for PSA. I started at 1 eventually it increased to 10, the next year 30. If I was receiving it only every 5 years I could have gone from 1 to 60 at the next test. 3) at 30 a biopsy was done with indeterminant results I asked for a second biopsy which had 7/12 positive samples. I had cancer. 4) why is my insistence on a second biopsy so important? I had radical surgery and the autopsy showed the cancer was fully contained in the prostate. and in nine years my PSA has been undetectable. I'm sure that a little longer wait would have been fatal by now. Early and aggressive detection was vital to my continued survival. PSA is not the only test; 1 Dr Longfinger, 2 PSA, 3 Biopsy.

[Stumpycoon (imported)]

Sooner or later i'll be getting my prostate out due to prostate cancer. Huge family history, it's only a matter of time. Thanks for sharing your thoughts and what you found about it.