Newly Diagnosed

Healthy 67 year old man
New Dx Prostate Ca 9/13/17
PSA 5.8, 4K 66%
3T MRI: Pi-Rad 5 Anterior Lesion
Artemis Bx: 1 Core HGPIN, 1 Core Gleason 6, 2 Cores Gleason 7 (3+4)
Robotic Prostatectomy schedule first week in Nov.
Hi all, my husband and I are medically trained (Dr and RN) and have been researching since "our" 4K came back at 66% in July. We are enormously impressed with the information that we are seeing in this forum and offer our heartfelt thanks to all who share!
Question 1: One of the 3+4 cores shows PNI (perineural invasion). Our Urologist didn't mention this during our conference. My internet search provided a wide variety of opinions from "no need to worry" to an ASCO source which said that PNI in needle bx core can indicate increased risk of disease progression after surgery! This scared me! Any thoughts?
Question 2: We have secured a surgeon who averages 24 Da Vinci procedures a year - does the forum believe that this is acceptable number to insure expertise? Jan

Welcome, but not happy you have to join this group. You have a favorable dx and many options available for treatment.

Surgery is certainly not necessary and several forms of radiation will be as good or better than surgery for cancer control and routinely present less significant side effects. The PNI and potential for it to present a problem with surgery is easily handled by radiation due to the larger area that radiation covers. You will see I successfully used radiation therapy many years ago for a higher risk situation. What you want to avoid is the probably of surgery and then radiation. This usually presents the very worst level of negative side effects. Better to start with the radiation and forgo the surgery.

Regarding the experience of a surgeon, most here will tell you they want to see at least 500 surgeries and someone that is operating many times a week. With most forms of surgery (not just PCa), the better results are experienced by surgeons that are always operating. 24 a year, in my opinion, is underwhelming and does not indicate a true specialist.

The great aspect is that you have plenty of time to meet with several surgeons and several different radiation oncologists before you decide on a treatment direction. SBRT, HDRBT (like I had) are both excellent choices for you and greatly reduce the treatment side effects and inconvenience compared to surgery. You owe it to yourself to really find out first hand. I also believe you should be talking to a true PCa surgeon. A specialist. PCa surgery is about the most delicate and difficult surgery there is and has great potential to do inherent damage to the nerves and plumbing that can have very negative effects on continuity and sexual function. A general surgeon that does a few PCa surgeries would not be my choice when there are so many that truly specialize.

Where are you located? Many men here may be able to give you specific referrals from their own research and experience to help you.

Best wishes and relax, take your time, do the research and make a treatment choice that you will be very happy living with for a long time,

Jack

Hello Jan and welcome. Sorry you have to be here. Others have responded about the PNI and I don't really have any knowledge about that. I can tell you that 24/year seems insufficient in my opinion. This is a complex operation that takes a lot of expertise. There are many, many expert surgeons who have done many hundreds or thousands. A 24/year guy is not someone I would trust with my prostate.

A couple of other thoughts:

1. I suggest that you and your husband read the sticky thread at the top of our forum that is designed for newly diagnosed patients and their families. Most find this helpful.

2. You should get the biopsy pathology re-read by an expert in prostate pathology. Dr. Epstein at JHU is one such doctor and instructions for contacting him are in the sticky thread. You want to be SURE of the G score before making a treatment decision.

3. Speaking of treatment decisions, you guys should really explore some of the radiation options before pulling the trigger. SBRT, HDR Brachy and LDR Brachy are all likely to cure hubby as well as surgery but with a lower chance of onerous side effects.

Good luck. We are here to help you through this.

Jim

Thanks so much for replies! I inaccurately wrote that surgeon averaged 24 robotic prostatectomies a year (2 per month). His actual numbers are 2 a week for a yearly average of 80-100. I don't know his overall total, but will ask during our next meeting. We are located in Western North Cariolina if anyone has a recommendation. Is there an available website or publication that provides surgical statistics? We considered radiation, but the higher ed rates plus possible rectal damage moved us toward surgery.

Specifically which radiation treatment methods did you research and did that include an assessment by the specific radiation oncologist that performs the treatment? No ro does it all so you have to see different ones for proper assessments. Of course a urologist/surgeon would not be the one to provide a radiation assessment as it is out of their specialty.

Most studies and reports show that both ED and urinary incontinence is generally worse for surgery than radiation. I have never heard or read that radiation causes worse ed than surgery. Please let us know where that information is from. There can be more bowel issues with the older forms of radiation, but that toxicity is much reduced by the modern IMRT/IGRT and SBRT. Brachytherapy both High Dose Rate temporary and permanent seeds both present very little bowel problems. I had both HDRBT and IMRT and have experienced no adverse side effects regarding ed, incontinence or bowel problems.

There is a wealth of information available and I am sure many will provide links for your research. But, I can't over emphasize the absolute need to be assessed by several different doctors in the different treatment methods before making a decision. If there is a mistake we see far too often it is that men simply do not get enough assessments made. In a 30 day period I met with three surgeons, two radiation oncologists and one medical oncologist. I also met with about a dozen men that had been treated by various means for the real story on their experiences. Plus reading and being here and searching the web. Only then did I make a treatment decision.

You indicate you got the dx yesterday and today you have surgery scheduled tells me that inadequate research has been done and that you are too much in a hurry. Take your time. There is much more to know and many more docs to meet. You only get one opportunity to make the best decision on the initial treatment method. The cancer is of absolutely no immediate risk and you have easily several months to do the research and make a decision. If there is anyone exerting pressure to get treated, they are not acting in your best interest.

As others have said, please get the slides read by either Epstein at Johns Hopkins or Bostwick in Virginia. These are the only true experts in America for assessing PCa. An interesting exercise I encourage you to do.........what if surgery was absolutely unavailable? What would you do? I think you would seriously investigate non-surgical treatments and make a thorough and objective comparison. Then you can throw yourself all in to the choice be it surgery or radiation or even AS for a while. But once you treat you will have your eyes wide open and will readily accept the very worst consequences of your treatment choice because you are very well informed.

Hi Jan,
Glad you found this forum. I can't express just how helpful It's been to my wife and I. You've gotten great advice here already. No matter what treatment you end up selecting find the very best practitioners you can for advice. Don't rule out traveling to get the very best. Plan for success.

Wow you guys have to step back and do some more research look at all your options wait for Tall Allen to come on and give insight in your dx. You just got the dx and you all ready have surgery scheduled like the others have said step back its not gonna kill you tomorrow I did AS for 12+ yrs. Just my humble opinion

Larry

Jan - Welcome to that club that none of us wanted to join. We're happy to meet you but sorry it had to be here. . .

That said, first things first. TAKE A DEEP BREATH. Relax. Maybe grab a glass of wine. Given your husband's pathology report, you have the luxury of time to learn, discern and decide which treatment, IF ANY, is appropriate to your situation.

Your husband may have intermediate risk PCa, but they stratify the intermediate risk group into favorable and unfavorable sub-groups. This is usually split by the Gleason score, with the 3+4 variety of G7 considered favorable intermediate risk, as it behaves much like low-risk PCa. The 4+3 variant, although also a G7, is considered unfavorable intermediate risk, and more often behaves like high-risk PCa.

In the favorable intermediate risk group, there are even some Active Surveillance programs that accept patients. There are also a good number of curative first-line monotherapies often offered to favorable intermediate risk patients. I strongly advise you both to read up on the whole range or treatment options before you choose surgery. I am NOT advising for or against any particular treatment. I just feel that you owe it to yourself to learn about them all, FROM PRACTITIONERS OF EACH TREATMENT, before you choose. Only a doctor who regularly offers a particular treatment has any vested interest in fully understanding that treatment, its efficacy and its side effects profile.

You should also be aware that most of the primary treatment modalities offered for favorable intermediate risk PCa have very similar, if not exactly the same, cancer control capabilities when delivered by an experienced practitioner. You will not have higher likelihood of a cure with treatment A versus B, C, or even D - no matter what that doctor tells you. Again, please search the posts of Tall Allen - he is one of the most knowledgeable members here, and he often posts links to the most applicable peer-reviewed articles and research study reports to support his assertions.

The big thing to remember is that you have time. You do not need to rush off to any treatment right away. Tall Allen will also be able to link you to the study that shows that for low and favorable intermediate risk PCa patients, there is no significant difference in outcome if they take even several months to decide and begin treatment.

If you get to that point, I can share experiences. I was diagnosed in early July last year and did not undergo treatment until mid-November. None of my doctors ever had the slightest inclination to rush me, and I'm doing fine. (I'm a Post Toastie. . . radiation, no surgery.)

Jan and Hubby aka Jazzsax,
Sorry to have to welcome you here but you will find a lot of good support among us lay posters. First thing is do like my Brother Paxson advised...relax... Your journey and battle has just begun. Besides any treatment experience/advice, take time to go to the search box at the top of the forum page, just under Forum and Chat. Type in the phrase "Letters to the newly diagnosed". There you will find some inspiration ,support and encouragement. Take care, and we hope to hear good news soon.Also, most of all...keep the faith!!!
Wings aka Dan in So Cali

Hi Jan... sorry you have to be here, but glad you found us. Lots of great advice above. Good luck on your research and hopefully a treatment plan that you both can live with. Please keep us posted on your journey. Take care. -JR

You will find proponents for both surgery and radiation at this forum, though probably more for radiation. As tennisplayer posted, the general consensus is that ED side effects are more likely with surgery. Tall Allen has posted with links to studies of efficacy and side effects of different procedures.

After being diagnosed I met with or spoke to several of the most prominent practitioners in their speciality, both radiology and surgery, before deciding on a treatment, and I encourage other newly diagnosed to do the same before making a decision. The right treatment/practitioner is worth traveling for if not available local to you.

Good luck,