New CA Diagnosis

Well ASA I guess we can agree to disagree on how bad surgery is.  

Dave 3+4

ASAdvocate said:

Dave, Keep in Mind

AS is not a lifetime guarantee, so I have been researching treatments for myself for 15 years. That involves many in-person suppport meetings, a dozen or so websites like this one, five Facebook PCa support groups, and now various Zoom gatherings. So, I have heard from thousands of men who have had a spectrum of treatments. I've probably posted 8,000 comments on various forums. You need to understand that my strong opinions did not come from reading studies, they came from all the first-hand accounts I was told by men who walked those walks. The boomarking of hundreds of studies came later, to reinforce that there was easily cited facts to support my views.

AS, your demeanor and approach to the PCa issue is what is termed in classical logic (Aristotelain logic) "the appeal to authority."

Cleaveland's posts, as always for him, were never snarky or rude -- observations I wish were attributable to you as well.

I admire the value you bring to the discussion, in knowing so well Best Practices protocols for AS generally.  But millions, I suspect even tens of millions, of men have been treated and or cured of this disease with both surgery and various modes of radiation worldwide.   No one has ever been 'cured' via AS.   Stop gnawing on the hand that feeds....   And I agree with Joseph that this tit-for-tat is inappropriate and hopefully has run its course.  But no one appointed me Hall Monitor.

There have been occassional doctrinaire writers here over time: men for whom radiation is good, surgery evil, or all other possible responses to a diagnosis.  This is childish and can never claim overwhelming empirical support, given the millions sucessfully treated in the many ways available.   Your level of obsession, as indicated by the number of groups you are involved with, suggests to educated laypeople that you may have issues that are not wholly PCa in etiology.  There is interest, there is due diligence, there is persistence, and then there are responses way beyond all of these.

My thoughts here may seem to you judgemental, but they are in fact the opposite: an insistence that all mainstream medical responses are potentially good, when supervised by a doctor.   I have never denigrated AS, radiation, proton, or sugery.  I have posted often praises of AS in fact, given that I have a close friend for whom it has worked wonderfully.  It is you who tend toward judgementalism and narrowness.

PayneOrtho61 said:

Met with Surgeon

I met with the surgeon yesterday and he was very helpful.  He did not try to convince me one way or another.  He felt very confident that the risk of incontinence with RP is very low 2-3% for his patients.  He guaranteed that I will have a greater challenge with impotence.  I was concerned that because my prostate is on the larger side (90cc), it may me more problematic for removal and possible increased risk of incontenence.  He felt treatment with Finasteride 3-4 months prior would shrink the prostate so that surgery would not have any significant increased risks of side effects.  He encouraged me to consult with the radiology oncologist regarding the different options for external beam radiation which I am considering and will have that consult in August.  My wife was present at the surgical consult and still hears what she want, which is that I can wait for a year before deciding on treatment.  The surgeon actually said that where I am on the scale of the disease is intermediate prostate cancer and that delaying treatment 6 months will not have and adverse effect on the outcome of the treatment be it radiation or surgery.  Based on the input from all of you above, I should take the time to research all the options and come to a decision in the next 3-4 months. I have also spoken to my two adult children, who are both in the healthcare field, and they understand and sympathize with my situation.  Hopefully, my wife will come to terms with the fact that I need treat my cancer with a definitve treatment and not watch it through active surveilence and just hope and pray is doesn't metastasize . I really appreciate the support and information from this group and will use it as I take this journey fighting PCa.  Thank you!

Sounds like you are doing your homework.  That is exactly what you should be doing.  Remember the decision is yours based on the information provided.  There are a lot of questions to ask as you can see from the comments you are receiving.  From my experience, and I am around 10 years older than you, be sure and keep quality of life points of interest in front of you.  Start preparing by getting in the best shape you can prior to the radiation or surgery treatment.  There is a physical side and sometimes a more important point, a mental side.  Stay positive.  You can beat this with either treatment, radiation or surgery.  Your case is unique to you.  You are driving this train.  If someone told me that they could cure me with radiation or surgery with no side effects, I am certain I would choose radiation.  There are a lot of good folks on this site that will feed you with a fire hydrant.  Just take your time and absorb it.  Your main focus should be what treatment is going to deal this cancer a knock out blow, with minimum side effects, and minimum impact on your quality of life.  Good luck on your journey.

Max Former Hodgkins Stage 3 said:

Overall

AS, your demeanor and approach to the PCa issue is what is termed in classical logic (Aristotelain logic) "the appeal to authority."

Cleaveland's posts, as always for him, were never snarky or rude -- observations I wish were attributable to you as well.

I admire the value you bring to the discussion, in knowing so well Best Practices protocols for AS generally.  But millions, I suspect even tens of millions, of men have been treated and or cured of this disease with both surgery and various modes of radiation worldwide.   No one has ever been 'cured' via AS.   Stop gnawing on the hand that feeds....   And I agree with Joseph that this tit-for-tat is inappropriate and hopefully has run its course.  But no one appointed me Hall Monitor.

There have been occassional doctrinaire writers here over time: men for whom radiation is good, surgery evil, or all other possible responses to a diagnosis.  This is childish and can never claim overwhelming empirical support, given the millions sucessfully treated in the many ways available.   Your level of obsession, as indicated by the number of groups you are involved with, suggests to educated laypeople that you may have issues that are not wholly PCa in etiology.  There is interest, there is due diligence, there is persistence, and then there are responses way beyond all of these.

My thoughts here may seem to you judgemental, but they are in fact the opposite: an insistence that all mainstream medical responses are potentially good, when supervised by a doctor.   I have never denigrated AS, radiation, proton, or sugery.  I have posted often praises of AS in fact, given that I have a close friend for whom it has worked wonderfully.  It is you who tend toward judgementalism and narrowness.

Thank you for your attempt at psychoanalyis. If you saw my facebook page, you would realize that I have many hundreds of friends and ongoing activities, such as traveling all over the world. PCa is not an "obsession" for me, but I do have free time on most days to check various news, politics, and PCa support sites. I do have strong opinions, as is expected  for someone who takes "advocate" for their screen name. The synomym for advocate is partisan. 

As far as denigrating treatments, I always can suppport my statements with peer-reviewed studies. But, the opinions were formed by statements of hundreds of men who told me they were unhappy with surgery. I know, the ones who are unhappy are the ones who hang around and gripe, like restaurant reviews. But, I heard what I heard.

At some future point, there will probably be some effective treatment that will not have potentially devasting side effects. Until then, whenever I hear somebody tell a newly diagnosed man to just "get it out", I shall contunue to voice my opinion that surgery is no longer the "gold standard" and that other options should be explored.

hopeful and optimistic said:

.

Here are notes that I took from a presentation by mark Schulz, world renowned medical oncologist who only specializes in Prostate cancer. The presentation can be found on YouTube.

radical prostatectomy for basic teal Prostate cancer-Prostate cancer staging guide

the presentation is about eight minutes 

 

Surgery for intermediate 

 

Technology in radiation has advanced, while surgery long considered the gold standard has stayed about the same.

 

Surgery is an operation and Anesthesia is given. There are studies that indicate long term memory loss with Anesthesia 

 

Radiation provides greater preservation of urinary and sexual function. Surgery scores poorer. 

 

After surgery everyone is impotent, and a minority show improvement. A minority of men of 5 to 10 percent claim that their erections are the same as before surgery.

 

Leaking urine is fairly non existent with radiation. But the majority of men who have surgery become incontinent right after surgery(the majority recover with fairly good control, however between 5 and 15 percent depending on age do not)

 

Stress incontinence (laughing, jumping) can occur resulting from surgery....

 

About 20% of men ejaculate with urine

 

Advantages with surgery 

Patient who has a very large prostate and pre-existing urinary blockage from a large prostate. When you give radiation to a large prostate these conditions can intensify.

More accurate staging

 

Summary 

More side effects

Cure rates no better 

Need to have a major operation 

 

 

 

 

 

 

In support of "hopeful " I will say that everything you mentioned in your post happened to me.

i have fair amount of stress incontinence some times for now reason, sometimes with reasons mentioned in this post.

i also leak when araused and during sex. Want to add total anorgasmia as another SE which happened to me.

I never recovered erec function. Went into surgery 100% POTENT and ended up 100% IMPOTENT.

ALSO, LOST 2+ INCHES OF LENGTH AND SOME GIRTH.

Was my RP gold standard? Yes, it was GOLD for my doctor but it was and still is MISERY for me.

MK

Treatment choices intermediate PCa Scholtz

Web site pcri.org prostate cancer research institute 

“Choosing a treatment for intermediate risk prostate cancer/prostate cancer staging guide”.  (Notes from this presentation found on YouTube)

Best cure rates...radioactive seed implants ...better than all other treatments to include TIPS which really doesn’t cure prostate cancer but puts in remission 

Convenience.....seeds near the top. SBRT aka cyber knife, both treatments are of short duration.

IMRT IMPT can require 5 to 9 weeks

Long term side effects.....hormone blockade or tips have the least side effects  All side effects of TIP reverse when the treatment is stopped.

All other radiation side effects are similar (important to go to a quality center)

There is some data that MAY indicate that seeds cause slightly more urinary problems than the others, but research really not that clear.

Surgery has higher risk of impotence and incontinence 

All of the above treatments should be considered for basic intermediate cancer, not ones with small amount of Gleason 4 where Active Surveillance is an option or Gleasons 4+3 where combo therapies

Patient needs to make a list of what is important to him in making a choice.

Avoiding bad things is the basis goal.

In this thread we discussed the number of cores taken in the biopsy. Here is information that will provide insight

Low-grade prostate cancer (PCa) is associated with a very low risk of PCa-specific death and often does not require treatment; spread with high-grade PCa is much more likely and is responsible for most PCa deaths. “PCa in Gleason grade groups (GG) 3-5 account for a majority of PCa deaths in the U.S. each year. The variation in disease lethality underscores the importance of accurate diagnosis,” noted Peter A. Pinto, MD, head of the Prostate Cancer Section of the National Cancer Institute Urologic Oncology Branch, and colleagues. They found that combined use of magnetic resonance imaging (MRI)-targeted biopsy and 12-core systematic biopsy led to enhanced detection of PCa vs. either method alone among men with MRI-visible lesions. Findings were published online in the New England Journal of Medicine. “PCa is one of the only solid tumors diagnosed by performing systematic biopsies ‘blind’ to the cancer’s location. For decades this has led to overdiagnosis and subsequent unnecessary treatment of non-lethal cancers, as well as to missing aggressive high-grade cancers and their opportunity for cure,” said Pinto in a press release. “With the addition of MRIbetter. There are many ways to lose weight, but finding one that is generally safe, effective, and heart healthy in cancer patients should be given enormous kudos, respect, and attention. I am grateful to all the researchers that were a part of this study. Thank you! Reference: 1. Freedland SJ, Allen J, Jarman A, et al. A Randomized Controlled Trial of a 6-month low carbohydrate intervention on disease progression in men with recurrent prostate cancer: Carbohydrate and Prostate Study 2 (CAPS2). Clin Cancer Res 27 February 2020 [Epub online] targeted biopsy to systematic biopsy, we can now identify the most lethal cancers within the prostate earlier, providing men the potential for better treatment before the cancer has spread.” The most common method for the initial diagnosis and grading of PCa is transrectal, ultrasound-guided, 12-core systematic biopsy. Unlike biopsies for most other types of cancer targeting abnormalities found by imaging, systematic prostate biopsy provides a non-targeted, systematically spaced sampling of the prostate gland. This approach leads to potential inaccuracies with disease grading. Combined Biopsy Strategy Improved Prostate Cancer Diagnosis Combo Biopsy Missed Only 3.5% of the Most Aggressive Cancers MRI-targeted biopsies merge images of suspected cancer taken earlier with real-time ultrasound technology. Studies have shown that MRItargeted biopsies result in a higher rate of detection of high-grade cancers vs. systematic biopsy. However, debate persists about whether MRI-targeted biopsy should be used in place of systematic biopsy or in conjunction with it. In the Trio Study, a substudy of the larger clinical trial, Pinto’s group evaluated the use of MRI-targeted biopsy, 12-core systematic biopsy, or the combination of the two in an  attempt to define the most effective method for PCa diagnosis. Men eligible for the substudy had an elevated PSA level or abnormal digital rectal exam and were eligible for prostate MRI. Men with detected PCa could enroll in the study if they consented to prostate biopsy. Of this group, 2,103 men had MRI-visible lesions and were included in the analysis. They underwent both systematic and MRItargeted biopsies at the same center. The primary outcome was cancer detection according to Gleason GG. Clinically insignificant disease was defined as GG 1. PCa with favorable intermediate risk or worse was defined as GG 2 or higher, and GG 3 or higher was defined as cancer with unfavorable intermediate risk or worse. Upgrading and downgrading of GG from biopsy to whole-mount histopathological analysis of surgical specimens were recorded among the men who underwent subsequent radical prostatectomy (RP). Pinto and team found that systematic biopsy alone and MRI-targeted biopsy alone diagnosed PCa in 1,104 and 1,084 men, respectively. However, adding MRItargeted biopsy to systematic biopsy led to 208 (9.9%) more diagnoses, 59 (28.4%) of which were clinically significant (GG 3 or greater), vs. either method alone. The combination strategy also led to upgrading to a higher GG in 458 (21.8%) men. Overall, PCa was diagnosed in 1,312 men (62.4%) with the combination of the two biopsy methods, and 404 (19.2%) subsequently underwent RP. Cancer detection rates with MRI-targeted biopsy were significantly lower than with systematic biopsy for GG 1 PCa and significantly higher for GGs 3-5 (P <0.01 for all comparisons). Thus MRItargeted biopsy detected more clinically significant (GG ≥3) prostate cancers. Among the men who underwent RP, Pinto and team found that systematic biopsy alone underdiagnosed about 40% of cancers, and MRItargeted biopsy alone underdiagnosed about 30% of cancers, while combined biopsy underdiagnosed 14.4% of the cancers. In addition, while systematic biopsy and MRItargeted biopsy underdiag-nosed 16.8% and 8.7% of the most aggressive cancers, respectively, combined biopsy missed only 3.5% of the most aggressive cancers. The researchers acknowledged that results were obtained at only one institution and might not be generalizable to institutions with less experienced practitioners. Use of one physician to perform the systematic biopsy and another to perform the MRI-targeted biopsy is not representative of actual practice patterns, they noted. There was also the possibility of selection bias in the RP cohort, since RP was not performed in all men with a PCa diagnosis. MedPage Today 2 April 2020

Source ustoo, may 2020

I'd recommend a fast decision.  If the cancer is still contained inside the prostate, removal will rid you of it.  If it escapes into the surrounding tissue and the lymph system, surgery is no longer going to solve all your problems.  

I had eight sites at 3+4 or 4+3 and while waiting for a surgery date , the cancer escaped the prostate leaving me with radiation and brachytherapy (more radiation) as the only option.  I'll never be sure whether the cancer will show up elsewhere.

Good Luck!

MK1965 said:

In support of "hopeful " I

In support of "hopeful " I will say that everything you mentioned in your post happened to me.

i have fair amount of stress incontinence some times for now reason, sometimes with reasons mentioned in this post.

i also leak when araused and during sex. Want to add total anorgasmia as another SE which happened to me.

I never recovered erec function. Went into surgery 100% POTENT and ended up 100% IMPOTENT.

ALSO, LOST 2+ INCHES OF LENGTH AND SOME GIRTH.

Was my RP gold standard? Yes, it was GOLD for my doctor but it was and still is MISERY for me.

MK

I'm so sorry to hear your story. I will certainly take it into account for my decision. Did/do you have any other conditions that might have caused this bad result?

I hope you are able to find other things in life to keep your spirits up.

And by the way - and please excuse me for asking - you say that you have never recovered erectile function, so does that mean that the 2 inches lost are from flacid state, or is that from a semi-erect-but-not-hard state?

Wishing you the very best possible