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Treatment of High Risk Advanced and M1 Disease: Is There a Role for Treatment of the Primary?

paulofaus profile image
18 Replies

Not according to Derya Tilki, MD. In the article cited below, she argues that the recent reports suggesting a survival benefit may be biased in terms of patient selection. (She says) when adjusted for biases, there is no benefit, that has been demonstrated yet.

I have been considering an RP, two years post-diagnosis, but this article gives cause to think twice. I'm still undecided. Two out of the three Uro's I've met with said they couldn't justify and RP in my case, 1 out of 3 said he thought it was a good idea.

See: urotoday.com/conference-hig...

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paulofaus profile image
paulofaus
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18 Replies
Tall_Allen profile image
Tall_Allen

We really won't know until after the results of the randomized clinical trial at MD Anderson are in - and that is many years away. Because there is so much uncertainty, I think that whole pelvic radiation is a better choice than RP+ePLND because the side effects are milder.

Here are a couple of articles that discusses the data:

pcnrv.blogspot.com/2016/08/...

pcnrv.blogspot.com/2016/08/...

paulofaus profile image
paulofaus in reply toTall_Allen

Thanks Allen, I'll take a look.

adlerman profile image
adlerman

I read about so many failures on here I begin to think it's AA or NA. People need to take another look at Cryosurgery, Those of you not caught until the cat is out of the bag, ignore this. I am sorry the medical gods chose to ignore prostate cancer and left you to suffer for their greed. PSA's and biopsy's are relatively inexpensive but there was this clamor that too many were going through biopsy's (oh the horror) and now we have all these cases of people not being diagnosed until the cancer is outside the prostate- much, much more money. Coincidence? I doubt it Big pharma and the AMA are the same kind of people-trumpers- liars cheats and thiefs. I was lucky. An older VA Doctor did a DRE and saved my life. It wasn't without cost but the cancer was killed- 15 years ago. It could return if I live long enough because I still have my prostate. It makes me so sad to read about chemo and radiation and so many drug experiments that many of you have been put through. I have no financial interest in cryo but what sold me on it was that it's repeatable- unlike all the other treatments. The radiologist who did my cryo designed the equipment used and the procedure- he did not push me into it. I'm not saying everyone will have the same outcome but it's time to recognize cryo as a treatment option. I wish all of you the best outcome possible.

Jollyjill profile image
Jollyjill in reply toadlerman

My SO had Cryo 7 years ago & the Uro told him that he had zapped the sucker! Unfortunately it has come back with a vengeance, with Mets in 2 lymph nodes & PSA around 53. He’s steering clear of heavy duty therapies & has started Casodex (150) with the long term objective of Proton Beam Radiation. We are being positive & hopeful. Please keep us in your prayers & share any insights that might be helpful.

adlerman profile image
adlerman in reply toJollyjill

sorry to hear that jollyjill. I was lucky with cryo and I was hoping many others would be also. This group stays up to date with every drug and treatment being used or developed. I hope your SO finds a treatment that will get him back in remission.

snoraste profile image
snoraste

With level 1 evidence lacking, it becomes an educated personal choice. The downside to the RP is the side effects. If you are younger and healthy, the odds are favorably skewed in your direction. A better question to ask is if you can tolerate the side effects is, why not? We know the presence of it may cause urological issues down the road. And even the most negative of the retrospective studies (at least the ones that I've read) on the subject do not claim that RP is a negative for PCa - only that it has no discernible positive impact and therefore not worth it because of comorbidities. Needless to say there are plenty of retrospective evidence for the benefits.

I did my RP about a month ago at the recommendation of my urologist and later my MO at MSK. My only complain is incontinence, which has been improving week over week.

paulofaus profile image
paulofaus in reply tosnoraste

Thanks snoraste, I like your perspective. As I said, I'm undecided, I still may go for it. I read about incontinence and I have to say, that sounds okay compared to my very poor urinary function. I go at least every 2 hours day and night and sometimes up to 3 times an hour, I also get burning, stinging, stabbing and aching pains and i'm now on Tapentadol (an opiate) so that I can get some sleep overnight. My prostate feels like an abscessed tooth that needs to be pulled out.

Dalph87 profile image
Dalph87 in reply topaulofaus

Hi Paul.

My father had RP while having lymph mets and although he had biochemical failure 2 months after (he had only 2 lymph mets before surgery but they became 5 after), the surgery still enormously improved his urinary function.

Before surgery he reached the point of being almost completely blocked and suffered atrocious pain everytime, as the cancer was pressing on his bladder and formed lumps around it.

After the surgery he had to use a catheter for a few months (which bothered him a lot), then had to deal with minor incontinence for a few more months but it wasn't too bad, just a bit embarassing.

Nowdays he has no more incontinence and can finally urinate decently but complains about the flow being a bit slow, no pain or stinging anymore fortunately.

He takes Urorex to keep things stable down there, both urologist and oncologist said the flow might improve slightly over time with it.

Another good thing is that today he doesn't even wake up at night anymore, at most once.

I know your case is different since you have been considering it 2 years after your diagnosis (my father had it only 2 months after) but I thought it would still be useful to share my father's experience with RP and mets.

I suggest to evaluate the choice very carefully before taking this step.

Good luck in your journey and God bless you and your family.

paulofaus profile image
paulofaus in reply toDalph87

Thanks Dalph87, I really appreciate your thoughtful comments.

Kimmilemo profile image
Kimmilemo in reply tosnoraste

I wish that was the only problem my husband had after his. He’s two months out and still has a catheter that continues to put out blood and he remains in pain. How are you doing now?

paulofaus profile image
paulofaus in reply toKimmilemo

Much better now. I've had radiation and that took away much of the pain. I'm also hardly using catheters anymore.

snoraste profile image
snoraste

Paul - I also had a kidney stent. Constant sensation of a dull discomfort and frequent urination. My MO told me I had to keep it in and replace it every 3-4 months for the foreseeable future. With the RP, the stent came out. Even if there are no other benefits (which there are plenty), the fact that the stent is out and the discomfort and frequent urination has stopped made the surgery worthwhile.

FCoffey profile image
FCoffey

I note that most of the arguments for local therapy in advanced disease are from urologists, who have a financial interest in the decision. With more men choosing AS, recommendations against screening and the associated loss of income from biopisies, urologists are falling behind in their boat payments. Surgery for advanced and M1 disease represents a new market.

snoraste profile image
snoraste in reply toFCoffey

I disagree with your cynical view. It is true that some urologist may look at it as a new source of income, but you could say that for just about ANY medical treatment/drugs. I can tell you that RP for M1/Advanced disease is a very small portion of RPs they perform at MSK, and far smaller portion of all urological procedures they do. It's far from their bread and butter.

FCoffey profile image
FCoffey in reply tosnoraste

I welcome disagreement. It's not cynicism, but realism. As you point out, the principle applies to ANY medical treatment. RP for M1/Advanced disease is a very small portion of RPs they perform at MSK, and this discussion is about the merits of increasing that proportion.

This is a topic much discussed within the medical profession, not enough among patient groups.

Physician’s system of rewards and incentives alters patient care in ways that may not be optimal for patients.

Medicine and medical practices are businesses.

There is a definite Incentive to use expensive equipment. Physicians that have bought a CT scanner are biased to do scans. Some is unconscious, without evil intent.

In this setting, you the patient have to audit inappropriate use.

If you have had surgery or radiation with undetectable PSA, there is NO REASON to do a CT scan. CT scans are relatively insensitive detecting prostate cancer – 30% detection with known metastases. I know practitioners who do CT scans every year in patients with zero PSA. With PSA under 10 odds of detecting cancer with CT are minimal at best.

In-clinic laboratory can be a major profit center. Tendency to order more blood tests than needed.

Specialists believe in their treatment, and have difficulty being objective.

It is worthwhile stepping back about any treatment recommendation and make sure it is warranted an not recommended to pay for a doctor’s Mercedes.

It is a buyer beware market in medicine, and you need to be careful.

Lest you think that is over the top cynical, every word above after the first paragraph is from my transcription of a Snuffy Myers video called "Inappropriate testing."

askdrmyers.wordpress.com/20...

Any errors are my own.

snoraste profile image
snoraste

There is no argument about the business aspect of medicine, and that much like other financial institutions, it is prone to veering off in the direction of money. I don’t need testimony of dr. Myers to believe it.

But I just don’t think they’re there to get you all the time. And in this particular case, if you do enough of your own research, and get 2nd and 3rd opinions from experts with no financial interests, I don’t see how one can still be cynical about it.

In the context of debulking, you either believe in it (based on available evidence) or you don’t. Your surgeon’s opinion should be only one of the inputs to your final decision.

Having said all that, I do agree that some limited cynicism is warranted and patients need to question involuntary treatments.

MiRob profile image
MiRob

It’s an ongoing debate and we still only have strong indication It can have a positive effect. But I believe strongly in this thinking.

urotoday.com/video-lectures...

MiRob profile image
MiRob

urotoday.com/video-lectures...

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