New prostate cancer diagnosis @ 52

[52Mike]

My husband is 52 and was recently diagnosed with prostate cancer after his first ever PSA level ever drawn was 4.7. He had a biopsy done that had 10 out of 12 cores positive for adenocarcinoma and all biopsy cores were 3+4 for the Gleason Score. MRI and CT scan are clear. His appointment with the urologist is coming up on Friday -- we are expecting that his doctor will recommend treatment and most likely recommend a prostatectomy. His doctor said that the biggest concern is the number of positive cores - most of them were less than 10% and even less than 5% cancer cells, however one of the core samples was 80% cancer cells and another one was 60%. His dad died from prostate cancer at the age of 71. We are assuming his doctor is going to recommend a prostatectomy. Anyone have any thoughts on treatment/prostatectomy? Thank you.

[NPfisherman]

Welcome 52Mike to the forum,

He has unfavorable intermediate risk prostate cancer-Gleason 7, PSA < 20 with 10 of 12 cores positive.-see below:

cancernetwork.com/view/favo...

Did the MRI show the prostate cancer was within the prostate capsule and not through the capsule ? No extracapsular extension of the cancer on MRI??

Not sure what type of CT scan he had...bone CT???

I have included some articles for you to review:

Comparing radiotherapy to prostatectomy in unfavorable intermediate risk prostate cancer:

pubmed.ncbi.nlm.nih.gov/311...

Comparing SBRT to Conventional RT:

pubmed.ncbi.nlm.nih.gov/350...

And then, there is quality of life:

pcori.org/research-results/...

Do I think you are stuck getting a prostatectomy?? No... Do the research and if you get prostatectony, then choose robotic nerve sparing prostatectomy with someone who has done over 750 procedures. Experience pays bonuses...

See a Radiation Oncologist ....

If you chose radiation, my preference would be SBRT and with short term ADT.

The thing that you MUST do is get to a Center of Excellence. If you leave yourself in the hands of some local urologist, then you will not fare as well. If you have questions about finding a Center of Excellence for prostate cancer, then ask... Remember, you can get a 2nd opinion...

Right now, you are scared... try and relax... you are not alone, and we are here to help.... Feel free to ask questions,,,

Don Pescado

[52Mike in reply to NPfisherman]

Hi Don, thanks for your reply and guidance! I just looked at the reports again and I was wrong, he didn't have an MRI. He had a CT scan with contrast and a PET scan. The PET scan report impression states, "normal radionuclide whole body scan". The CT with IV contrast report findings indicate everything is normal except for the prostate - it says "prostatomegaly. " It goes on to say that there are no pathologically enlarged lymph nodes identified in the retroperitoneum and lymph nodes and no suspicious osseous lesions are identified. There is no mention of anything visualized that extends beyond the prostate capsule, though I'm not sure if the CT or PET scan is detailed enough to show that or not. We meet with the urologist tomorrow to get his recommendations. We have a 2nd opinion scheduled for 08/31 with a different urologist that is affiliated with a high volume center and we are going to set up a 3rd consult... just not sure where we want the 3rd consult to be. I'm going to ask the urologist for a recommendation on a high volume cancer center for another opinion.

We are in Illinois and there are many excellent medical centers in Chicago so we will travel for the best care. it's rather frustrating as it took 2 months for him to get in for the biopsy, then we've had to wait 3 weeks for the "Cancer Consult" appointment with the urologist (tomorrow's appointment). Assuming that surgery is in his future, we'll ensure that the surgeon is highly skilled with robotic assisted surgery (>1000 surgeries completed).

How fast would you get going on treatment? I'm nervous with 10/12 core biopsies positive - I don't feel like this is the kind of situation to wait on, especially if there are already cells that are 4+ grade, though most are 3+. All you need is one of the grade 4+ cells to get out ...

I've got my questions ready for tomorrow! Thank you all for your responses, I'm not sure if Mike will actually come on here and post, but I'm very appreciative for all of your advice! I'll keep you posted after tomorrow's consult ... I'm Mike's wife : )

[cujoe in reply to 52Mike]

Mike's BETTER half. (Wives seem to be the best patient advocates by far!) I had to look up prostatomegaly, but it just refers to an enlarged prostate. (Causes can vary)

radiopaedia.org/articles/pr...

Since you may read this before tomorrow's appt and you might not get a response from others, my 2 cents is that treatment is the prudent thing to consider. As I described in my own case, earlier treatment might have gotten the cancer while organ-confined. I also tend to side with mateobeach - that the surgical removal of the prostate allows for a more complete pathology of the cancer extent. Tissue from mine was later used for genetic analysis, which is far superior to that from scattered needle biopsies.

If it looks like you will have a long delay in getting to treatment, you MIGHT consider doing some form of ADT until you get to there. That would, in theory, suppress the cancer until treatment begins. I'm not a big proponent of ADT, but it does have its time and place and this might be one time to consider it.

Good luck tomorrow. Sounds like you are on top of things. Push hard to get expedited appts/consults, so you can get things moving in the direction you want. Be Fierce!

Keep us posted on how things go. Best to you and Mike,

Ciao - Capt'n K9

[NPfisherman in reply to 52Mike]

Hi Mike's wife,

I agree with my K9Compadre that you may wish to consider ADT for a term prior to surgery and shortly after. With early ADT, it will get things under control prior to surgery and shrink the tumor, as well as killing off circulating tumor cells. A study I found revisited this issue and felt there was benefit for unfavorable intermediate and high risk prostate cancer patients prior to prostatectomy.

urotoday.com/journal/prosta...

If you ever need an MO (we hope you never do), then Maha Hussain is at Northwestern and she is among the best in the world... She participated in the 2022 Advaced Prostate Cancer Consensus Conference for the best international specialists in prostate cancer.

feinberg.northwestern.edu/f...

All the best,

The Don

[52Mike in reply to NPfisherman]

Thanks again for the info, much appreciated. So the appointment went as expected .. with his age and the volume of cancer in the prostate, his urologist recommends surgery as the first route. He reviewed pros and cons of surgery vs. radiation therapy. He acknowledged that a surgeon will recommend surgery, a radiologist will likely recommend radiation therapy, but his recommendation would be surgery. Surgery is available with this group using the robotic assisted Da Vinci device .. but he wouldn't be the one doing the surgery, he would have one of his partners do surgery as he specializes more in this surgery. Not sure how many he has done .. need to find out. The urologist offered to make referrals to the academic medical centers, which I appreciate and we accepted. Will get another opinion at University of Chicago hospitals or Rush University Medical Center. Need to call the insurance company to see how many "2nd" opinions they will cover. If he had surgery with this urology group, they would plan on getting him in within the next 3-4 weeks. Mike would like to avoid surgery, but he wants to get the other opinions to see what their primary recommendations will be (surgery vs. radiation).

[NPfisherman in reply to 52Mike]

A sound plan...review your options and choose wisely. What about early adt while you decide?

Don P

[cujoe in reply to 52Mike]

Ms Mike,

Sounds like you've cleared hurdle #1 - and now will have to decide on surgery vs RT + the when, where, and by whom it will be done. In making a decision of surgery or RT, here are several things to keep in mind:

#1. Surgery generally will require a pre-op visit, the surgery, an overnight hospital stay, and then a follow-up visit about a week later to remove the catheter. If pathology confirms organ-confined disease, then once PSA has cleared from the blood and an "undetectable" PSA-status is achieved, it is just regular appointments/labs to monitor for a stable-to-curative outcome over time.

#2. RT involves one or more scans to setup the RT plan and may involve a minor surgical procedure to place targeting "fiducials" and possibly a protective rectal gel-pack. RT will then require regularly scheduled sessions for treatment. Recent techniques have boosted the session dosages to reduce the number of individual sessions. (I'm not really current on the many different external beam RT procedures in use, so maybe someone else here at FPC can comment?) In total, any form of RT will be more treatment "inconvenient" than than the normally compressed day-in-next-day-out of surgery.

#3. Depending on you health coverage (co-pays, deductibles. etc), another consideration is cost. Surgery is considerably less costly than RT, as the EAU paper linked below confirms. And while you should not make your treatment decision based on cost alone, it is something you should be aware of in advance.

reader.elsevier.com/reader/...

#4. Finally, as Dave and I have mentioned previously, if it looks like the decision is going to take a lot of time to get sorted out (second opinions, doc consults, etc.), you might want to discuss doing short-term ADT until you get to treatment. In fact many people who do RT also add adjuvant ADT as part of the treatment plan.

Lots to consider, but no reason to rush into a quick decision that you and Mike might later regret. Be patient and then decisive. Always looking ahead and not back.

Have a nice weekend and don't make it all about PCa.

Best to you both. Paz - Ciao - K9 terror

[52Mike in reply to cujoe]

Hi Don and K9, thanks for your comments. Urologist didn't mention anything about short-term ADT but we'll put a message through to his doc to ask about it. I'm pretty sure that he's going to go the route of surgery (that's what he's saying now), so it truly will be a matter of getting the appointments set up for consults and deciding on where it will take place. There is an appeal to staying local, both of us work full time and we have kids to juggle ... but being at a bigger academic medical center sounds like the right choice. I'm already imagining our boys in the same situation in about 40 years : (

[cujoe in reply to 52Mike]

Ms. Mike, If you & Mike have made the decision for robotic surgery, I suggest you review the following PCFA post regarding the early (pre-surgery) "training" of the pelvic floor muscles to reduce possible incontinence issues after surgery. It may take some early mental adjustment to take this on, as Mike will have to accept the possibility of incontinence being an issue with the surgery. (Incontinence usually occurs immediately after surgery and improves over time, while with RT it may not manifest until years later.)

The recommended Kegel exercises have to be learned by men, as we do not ordinarily use pelvic floor muscles (as do women) much to control our urinary function. I once read a description by a incontinence PT who described it as follows: Women's pelvic floor muscles are like a trampoline, while men's are like a hammock. In other words, men have the muscles, but we don't ordinarily use them and, as a result, they are mostly "untrained".

As such, connecting the mental function to activate those unused muscles requires some degree of dedicated training. For example, once accomplished it becomes a natural instinct to "do a kegel" to stop stress-incontinence when you sneeze, cough, or lift a heavy object. Like any muscle, even when trained, it still needs to be exercised regularly. The procedure outlined in the PDF linked below is a good guide to doing both.

Make sure not to disparage over the prospect of some level of incontinence after treatment. Most all men have some degree of short-term incontinence, but improve to normal/acceptable levels over time. That should be your mental frame for thinking about Mike's future. Surgeon skill is a key factor in preserving both ED and continence, so try to find one with a good track record.

A pelvic floor exercise program before prostate surgery improves urinary continence - Prostate Cancer Foundation of Australia - By Dr Wendy Winnall - scientific writer for PCFA, 03 December 2019.

pcfa.org.au/news-media/news...

This PDF brochure download from the above PCAF post gives clear and simple instructions on how to find and strengthen the pelvic floor muscles.

physiotherapy-before-and-after-prostate-cancer-surgery.pdf

physiotherapy-before-and-after-prostate-cancer-surgery.pdf

pcfa.org.au/media/743467/ph...

Most men never are told to do anything about incontinence until AFTER surgery. Start early and get ahead of the issue. Good Luck & Stay Well,

Ciao - K9

[Ducttape in reply to 52Mike]

Good Day Mr and MS 52Mike I finished my journey down the Radiation approach three weeks ago -- EBRT/IGRT (4 1/2 weeks) after a HDR Brachytherapy. A Fusion Guided Biopsy resulted with a Gleason 9 in a seminal, and 2 areas that were Gleason 6 and,..... a couple 6's thrown in for good measure :)The First Urologies did an MRI and Standard Biopsy (12 cores) and only indicated I had two areas in prostate and each were Gleason 6 in the report (which he did not share with me) indicated they suspected a hemmorage in Seminal Vesicle (no mention of tumor), low risk. My PSa was at 7+(up from 6 ish) 3 months earlier.

I decided to find a Center of Excellance to carry on my journey.

I went to an MD Anderson Campus here in Arizona after doing some research to find a Center of Excelllance. WELL WORTH the 2 hour trip each way to get a team. the new Urologist had the lab get PSA in the morning and met in the afternoon (it was up to 11+ ) Within a week he had me start 30 days of Cosadex and then a three month Lupron ADT and scheduled a Fusion Biopsy after the 90 days of ADT (basically, let's take the food away and reduce the tumor sizes as a goal), Had the Fusion Biopsy done, had results in two day. The Urologist there took my results of an MRI and a Fusion (mri guide) Biopsy (24 cores) and the CT /Bone scans to their internal tumor board to get mutliple "eyes" on these tests/procedures. the choice was going to be between surgery and radiation. my wife and I started researching and reading- A LOT. I was pretty sure that surgery was going to be the way to go but waited to meet up the team Radiation Oncologist and Urology Oncologist in the office to get their opnions (and yes Uro-Onc likes to operate and RO likes to radiate) It was surprising when the Uro-Onc Doctor said, surgery is not the best way to go (he has done a LOT of Robotic surgeries), the RO was awesome and conveyed all the info from the tumor board and why they suggest radiation (they also commented on areas they suspected were mestatic bone spots ion a first bone scan were actually old athletic injuries). The RO scheduled me for a HDR Brachytherapy within 30 days with a two week break and then ExTernal Beam Radiation. Basically a triple play ADT, Brachy and EBRT/IGRT.

My PSA is now under .5 and I am doing great. recovery was less then a week or two. Mostly working on controllind the urge to pee ;),

I'm a pretty active 71. I asked if age made a difference and they all said they are reluctant to perform RP in dudes older then 75. SO it was a consideration, but not the MAJOR consideration. I wouldn't have hesitate if they had said surgery because of their experience. I'm actually quite pleased with Radiation approach. I think mostly because after 6 knee surgeries and replacement, Rotator Cuff report, hernias and other odds and end surgeires, I was done with more major surgery

Good luck Hang in there -- it is a journey -- look forward instead of your rear view mirror ("what if"), sure there will be dips in the road, but stay strong - both of you

Cheers and Party on ,

Ducttape Jake

[KocoPr]

Hi Mike welcome to the best forum period!I am not as experienced as most on this site but one thing I have learned is get to a good oncologist right away before you make any decisions.

What city are you in?

The warriors on this site will give you the best doctors to see.

[NPfisherman in reply to KocoPr]

Thanks for the forum endorsement. We are a darn good bunch of folks here. We always give our best... Solid advice about getting a good Oncologist. Too many people fool around with their local urologist and get screwed. If I had listened to my urologist then I would be castrate resistant or dead today.

Fish

[cujoe]

Mike,

My journey started with a similar initial biopsy report:

6 out of 12 positive needle biopsy and 2 with +50% cancer, all cores Gleason 6s and PSA around 5. (2 years later 5 cores were 3+4 sevens and 2 were 6s (+1 "borderline") for a total of 7+ out of 12. PSA was 12.6 just prior to the second biopsy having bounced around between 6 and 8 in the intervening 2 years between biopsies.)

After the second biopsy, I got to a regional cancer center of excellence and was scheduled for a prostatectomy ASAP. Looking back, treatment SHOULD have been recommended after the first biopsy. By the time I had the surgery (3 years after the first biopsy), the cancer was no longer organ confined and had invaded the rt seminal vesicle - so was essentially metastatic.

The moral of my story is don't delay in getting to treatment - and choose the treatment type, location for treatment, and specialist(s) with the most experience possible. That will like be at a major cancer center. When your life is at stake, being an aggressive advocate is the only way to the best outcome. The only bad/dumb questions are the ones that never get asked.

Good news is the surgery was in 2013 and I am still kicking and currently off treatment with excellent QOL. Be decisive and act early. Feel free to ask any question of the group that you need to - and stay calm and be positive.

One day at a time. Stay Well as you do that.

Ciao, Capt'n K9

[NPfisherman in reply to cujoe]

Great advice from K9 Terror... We hope we have given you some things to reflect upon in making a decision... If not clear, ask us... Remember... you are sailing this ship... take control... get the best help available... and... good luck...

Don P

[52Mike in reply to cujoe]

Hi K9 Terror, I'm so happy to hear you are doing well and have an excellent QOL! Thanks for sharing your experience and for your advice! I don't have any problem being the "pushy wife" - I want my guy around for a long time and our kids need their dad around for a long time! I already had to be pushy and message the urologist to request the imaging studies - not sure if he would've ordered them after tomorrow's appointment anyway, but there is no sense in waiting to get them done and have a little bit of peace of mind that it doesn't seem to have spread anywhere. We didn't expect it to have gone anywhere yet with his PSA of 4.7, but relieved to know that nothing showed up elsewhere on the scans!

[MateoBeach]

Good advice from NPfisherman and cujoe. Very smart guys.The decision for initial (primary) treatment, whether surgery or radiation is personal choice. Cure rates are similar and side effect profiles are roughly comparable. Personally I tend to favor surgery (Robotically Assisted Radical Prostatectomy, RARP) because you get more information. Tissue for genetic and histochemical analysis. Whether margins are clear or not. Extracapsular extension or not. Seminal vesicles invasion or not. And sampling of nearby lymph nodes. You don’t get that with radiation.

Additionally, in the case either first treatment does not prove curative, it is easy to get salvage radiation treatment after RARP. While doing prostatectomy after prior radiation can be very problematic.

If he chooses radiation, he needs external beam, IMRT at an excellent center. Proton beam is not as good as claimed for the prostate for technical reasons. (Bragg Peak limitations in the pelvis.) and definitely not 2nd tier treatments such as HIFU, cryo, targeted laser, Gamma Knife etc. Despite their slick claims.

If surgery is chosen then the first thing most experienced urologic surgeon with RARP must be sought. Not your general local urologist who did the biopsy.

Welcome. We are here to support you both. Paul aka MateoBeach

[NPfisherman in reply to MateoBeach]

Good advice coming from another smart guy...LOL... We certainly have some here....

ED1

[52Mike in reply to MateoBeach]

Thank you for the advice! Will keep all of you posted on this unfortunate journey.

[Nusch]

I can only add to this conversation, that my starting point (see bio) wasn’t favorable at all. But today, almost five years later my PSA is at an undetectable level (under Lupron) and I’m fine. I would again start with RP first, followed by RT.

[Bruins11]

I had RP in September, 2018. Gleason 3/4 like you. PSA has been .01 ever since so the cancer has been eradicated. However ED and mild stress incontinence has been a problem ever since , so I would definitely check out the radiation option thoroughly before you pull the trigger. I regret not doing that when I made my decision. Good luck!

[Cancer2x]

You will read all sorts of technical-medical responses here. Digest slowly.

For you specifically, I was diagnosed at age 48, and regardless of therapy chosen, am still here at age 75!

It’s bound to be a strange trip, but it can be a long trip. Education, joint decision making are key.

Best of luck wherever your journey leads!

[52Mike in reply to Cancer2x]

Happy to hear you are doing well and thanks for the advice and well-wishes!

[Cancer2x in reply to 52Mike]

Thank you! Remember, this CAN be a looong trip! No one has an expiration date printed on their body. Good luck to you both, AND to the doctor(s) you choose!

[WillowHawk]

Hello Ms Mike! I am so impressed with you working hard to learn, finding this wonderful forum and doing all this with the job and 4 kids! (Clapping and hugging) Be sure and squeeze in some healthy life, rest, and laughs when you can. Mike is lucky to have you. I look forward to hearing how it goes, all the best,

Kate

(sister of Paul, MateoBeach)

[52Mike in reply to WillowHawk]

Hi WillowHawk! Thanks for your words, I'll update as things go forward. Surgery is now scheduled for November 9th. Best to you and your loved ones