Newly Diagnosed Gleason 6

Davidg,

Thank for the support.... When i had my second opinion in Boston at mass general, i met with a radiologist/oncologist , oncologist, urologist, and urologic surgeon all at once. It was a great meeting. The radiologist told me if it was him, he would do the surgery. He did not recommend radiation and thought AS would be difficult to follow given my age. His opinion came across as an honest one , because if i chose the surgery, there would be no further work for him on my case.

Hi again, GC.   This is a follow-up to my earlier posting, which I realized later was answered in such brevity that it may have been inappropriately incomplete.   You seemed to be asking for an opinion about Dr Dahl, which I did not provide but will discuss here. But first, are you familiar with the PCRI, the Prostate Cancer Research Institute?   They conduct an annual conference in which several members here at HW have attended because it is the world’s leading event focused solely on PC, and attended by virtually all world’s thought-leaders in PC.   These are the guys who treat men across the very wide span of the disease (perhaps you’ve heard the phrase the PC is really multiple very different diseases).   I’ve previously pointed you to the NCCN (National Comprehensive Cancer Network) risk categorization link (most clinicians carry around the NCCN guidelines in their lab pockets when see patients in their office), but PCRI does their own version of the same thing.   PCRI’s campaign to educate & guide men is called “What is you SHADE?”   ( LINK ) “What is you SHADE?” turns out to all be shades of blue—blue for prostate cancer.   Having separate shades enables men to find information on their site which is appropriate and aligns to their particular situation.   They help separate information for men in the “Sky” shade from the “Teal” shade, and the “Azure” shade, etc. because it really is very different.   You should go to their site yourself, and confirm what “shade” you are. As an illustrative example for others following this thread, however, I will describe the PCRI’s “Sky” shade.   The “Sky” shade is for newly diagnosed men (no prior local therapy) with PSA under 10, Gleason Score under 7, a third or less of their biopsy cores positive (as long as they had 12 or more cores taken), and a negative DRE (no nodule).   One can find a wealth of PCRI resources for the “Sky”-shaded men by clicking on that color (and of course you can find a wealth of info on the other shades by clicking on the other appropriate colors), but their summary "SKY" recommendation is (and here I will simply copy/paste for complete, unambiguous clarity): Sky : Studies now show that men with the Low-Risk type of prostate cancer can safely be monitored with regular checkups instead of having immediate surgery or radiation. Monitoring is generally preferred because treatment causes serious problems such as difficulty holding urine or trouble getting an erection. One study of over 1200 men reported that two years after surgery 78% of men were impotent and 10% were permanently incontinent. Monitoring is not right for every man with prostate cancer, but it’s a good option for men in the Sky category. The standard monitoring protocol consists of a PSA test every three months, digital rectal examination twice a year and a prostate biopsy one year after diagnosis and every two or three years thereafter. Annual imaging with a 3-Tesla endorectal MRI or a Color Doppler Ultrasound is also prudent. Some also undergo PCA-3 urinary testing once a year. While on observation many men modify their diet and exercise habits. Mild suppressive treatment with a 5-alpha reductase inhibitor such as finasteride or dutesteride can be considered. Active surveillance is not a commitment to forgo treatment. It is a commitment to monitor closely and intervene at the first sign of growth or change in the cancer. Close observation over time is the best way to distinguish men who can be safely watched from the men who genuinely need treatment.   Like I said, you should go to the site yourself, and let us know (or don’t, but at least go figure it out for yourself) “What your SHADE is?”   So far, I’m not giving any of my own opinion…I rarely do here at HW; just present the facts which are also out there for anyone to find on their own, but newbies often don’t know where to start looking, or don’t even know what to start looking for . As an example of that (an example of newbies not knowing where or what to look for), we conducted a poll here at the HW site ( HERE ) six months ago or so about whether we should be informing newcomers about the controversy of prostate cancer overtreatment ( of newly diagnosed low-risk men ) which exists today in the industry.   Overwhelmingly, the men & women here at HW felt that newcomers should at least be informed of this issue.   Consider yourself informed .   Google “prostate cancer overtreatment” to draw your own conclusions.   So what about Dr Dahl; now I’m going to give you some personal opinion.   He’s got nice credentials, but he seems very much like a young “technician” focusing on improving his own technique primarily for renal cancer and prostate cancer.   By that, his practice appears specifically focused on surgical technique, rather than treating men as patients.   It is not altogether uncommon.   He probably has very few (if any) men on Active Surveillance in his practice.   A technician in a “rush-to-treatment” practice can get quite good results if you operate primarily on men who probably don’t need to be operated on in the first place.   He’s not alone.   There are others who have built similar reputations.   (There is a classic quote by Dr Pat Walsh, known as the father of modern nerve-sparing RP surgery, speaking about the migration of surgery to more-and-more low-risk men; he said, "If you are going to do an unnecessary operation, it is important that you do it well. ")  If, by asking if I was familiar with Dr Dahl you also meant would I recommend him based on what I know about your case, I would say “no.”   I would recommend that you find a urologist who has a balanced approach, and has a large number of patients on AS as well a large number of surgeries under his belt. I think that one of the best role models in the NE region of the US is Dr James Eastham at Memorial Sloan Kettering in NYC.   Rather than rush low-risk patients into surgery, he can be found telling them, “let’s wait, and see what this little amount of PC is doing.”   ( LINK )   If you have the ability to travel, I would highly recommend him…otherwise, find someone with a similar approach.   My opinion.   So, you won’t find me “pushing” anything, but if you keep asking me questions, I will keep answering to the best of my ability as an informed, savvy PC layperson.       Post Edited (Casey59) : 10/17/2013 9:47:17 AM (GMT-6)

I have to agree with David. I think at your age assuming you are fit, meaning not overweight, don't smoke, and you exercise you would do well with surgery. If this is not you take 6 months and change your life before you have surgery and you should do fine. In the long run you have to take the opinions from Dr's and decide which one is right for you.

Good luck

hi gc gleason 6

 my numbers are almost the same as yours so I wanted to weigh in. i'm not trying to influence your decision but just wanted to tell you how I felt at your stage. I found out in may of this year that I had g6 in 1 of 12 cores and my doc gave me a lot of material and books to read on it and scheduled me an apt for 2 weeks later, after reading all I had and joining this site I thought that while having all my options open is a blessing it's also a curse (face it if they found the same amount of g7 it would be a no brainer) but after learning all I could I decided for surgery, but thought as long as I had time to put it off I would for 3 months incase I changed my mind , and I did but after the 3months were over I still felt the same way.

 my feelings were the same as yours although i'm older than you from everything I read my chances were better for  recovery while i was young (a relative term) and in good shape. although I had my summer and a great time but my PCa  was always in the back of my mind so I knew for me it was best to get it out.

 I had my surgery on sept 26th and things could not have gone better since when they took my cath out I was completely cotenant and still am during the day but have had a setback at night due to erections in my sleep (a good trade off) I have to wear protection a at night now, hope it's temporary (I got taken to the woodshed for saying the d word here).

 while things are to be going great for me now I knew that there was no guaranties and take that into consideration.

  anyway take your time and decide what's best for you and never look back. and whatever you decide everyone here while be  supportive of you

good-luck carl

Actually, David G., as usual I give your posts zero regard. I have seen enough people suffer from overtreatment, and frankly, I believe that your comments contribute to that very phenomena. If I can help a brother spare himself from unnecessary issues, I don't give a rat's ass what you think...never did.

GOPer, the actual medical professionals he consulted with said the same thing I said. Try to use some logic. The world, like this disease, isn't black and white. Your anecdotes aside, there is a reason most experts would tell a man who fits the profile to seek surgery or other treatments.

Statistically, in the hands of a great surgeon, a man has a far greater chance of avoiding long term SEs than of getting them. Most of the best surgeons have statistics out proving that. Beyond that, you have dozens and dozens of your "brothers" on this very forum who no longer have SEs.

All treatments, including a proper AS program can be effective, all treatments have possible SEs, and a nuanced approach taking into account individual statistics and factors is necessary when making individual decisions.

GC is blessed with both a fantastic medical team and a disease that affords him many treatment choices. Scientifically speaking, the choice he says he is leaning towards...surgery, is a sound choice give his age. His medical team, including a radiologist and an oncologist have verified this for him. I imagine you can comprehend all of this.

I think you have reading comprehension issues. I've done nothing but tell GC that any treatment, including a proper AS program will work for him. That means I suggested exactly what you say I do not suggest.

As for statistics on potential SEs, they are what they are. John T has posted national ones many times, He has posted ones listed by doctors he thinks are the best around. Others have posted ones published by the so called "superstars". None of them are consistent with the bombastic picture you paint.

Furthermore, one has to to consider all factors. including age, when trying to determine what the possibilities of avoiding long term SEs are.

There is a reason a radiologist and an oncologist told GC that surgery was what they recommended in his case and it ain't because they were going to profit from it obviously.

Telling a man who is going through this and who is leaning towards surgery (for now) rubbish about what will happen to him is not support in my book.

"If a patient has good sexual function without erection-enhancing drugs before surgery, Dr. Tewari tells him that he has about an 85 percent chance of regaining an erection firm enough for intercourse, although he may need erection drugs and it may take up to 18 months for his function to return. "

and

www.sciencedaily.com/releases/2012/05/120516152242.htm

"In addition, Hu found that younger patient age and better pre-operative erectile function were associated with better five- and 10-month erectile function after surgery.   The traditional nerve-sparing technique, which involves peeling nerves from the prostate, similar to peeling an orange, was associated with the worst five-month sexual-function outcomes. The newer, gentler approach uses less peeling to minimize displacement of the nerves."

and

"Following a series of anatomical discoveries of the prostate and its surrounding structures about 2 decades ago, changes in the surgical approach permitted the procedure to be performed with significantly improved outcomes. Now after the surgery, expectations are that physical capacity is fully recovered in most patients within several weeks, return of urinary continence is achieved by more than 95% of patients within a few months, and erection recovery with ability to engage in sexual intercourse is regained by most patients with or without oral phosphodiesterase 5 (PDE5) inhibitors within 2 years. "

urology.jhu.edu/prostate/erectyle_dyssfunction.php

Post Edited (davidg) : 10/18/2013 5:38:06 AM (GMT-6)

Got results today from psa test last week.
Its was 5.8 up from 4.6 in june. Surgery scheduled with dr Samadi in three weeks. Cant risk waiting any longer

Cdm39

It does feel good having made my decision, but still nervous. Glad to hear you are doing well, what was your final pathology report? Was the cancer more severe than what was found in your biopsy?

Pathology showed minute foci G6 in right apex(where my 1 biopsy core was positive) and minute foci G6 in left base. Very small amount of adenocarcinoma found. All margins, SV invasion, PN invasion, and lymph invasion negative. Feeling pretty good that 10-20 years from now this will be a distant memory and not something I am getting ready to battle. Cure is a near certainty according to doctor. Very glad I did not have to wait till I was 50 to get my first PSA test. My Outcome may have been a little different.

Hi GC... Hi All.. first time post. Will start a separate thread on my info later.

For what it is worth GC, you can't make a bad decision and it is good to see you make a decision (I am still working on one). Us G6 folks are stuck in a bit of a cancer rut and the info we get comes from all sides and opinions. I have done a LOT of research and most of the literature and studies do not really agree on what we should do. If you look at the John Hopkins info, then anyone under 60 is a candidate for surgery vs AS.

Also not sure if this helps (sounds like you have come to terms with your decision) but according to NCCN Guidlines:
"Active Surveillance is usually appropriate for men with very low-risk prostate cancer when life expectancy < 20 y"

The John Hopkins site says the same thing.

This would lead one to believe that if your life expectancy is over 20 years, than seek treatment. I've had 3 doctors tell me the same thing and one doctor said he would choose AS, but he admitted it was because he was over 60.

Good luck to you!!

Cdm, great news for you!! Seems like you made the right choice for you. Best of luck to you!

Mikela, every doctor i have talked to has told me that i will have to treat this sooner or later...i decided on surgery now to nip it in the bud. Why wait until it gets worse. Most stories of AS i have heard, only lasted 3-5 years before treatment was needed. Also my psa jump from 4.6 to 5.8 in 5 months concered me.. It is a hard choice to face, and i am sure you will be just fine with whatever you decide