Gleason 10, PSA 146, lymph node + age 50, looking for input

Husband, age 50, just diagnosed Gleason 10, looking for input. PSA 146 at diagnosis 7/2022 (was a 2 when last tested 30 months before). 14 of 14 cores positive, most with 100% and all grade 5. Tumor is “alarmingly large” they said and affixed to the rectum and pelvic floor. PSMA pet shows spread to pelvic lymph node, seminal vesicles, extensive spread to nearby tissues and perineal invasion. No bone Mets seen. Stage is T4bN1M0. We were at Duke first and they started him on Orgoyvx, Zytiga/prednisone and plan to do external beam radiation if tumor shrinks from the meds. They say surgery isn’t an option.

Got second opinion at Mayo. They say his case is very high risk (according to NCCN guidelines it is) and because of spread to lymph node and seminal vesicles he needs to do chemo with the orgoyvx and Zytiga and then high dose brachytherapy and external beam radiation (and perhaps surgery). Problem with that plan is they said we have to find an oncologist locally to administer the chemo. We asked Duke and John’s Hopkins and they both say no because “he isn’t technically even low volume and chemo has only been shown to give benefit in high volume patients”. But when we ask for the prognosis with their plan (Duke and Hopkins) it’s not great. I’m fact it’s a really bad gut punch.

If not for the physical we wouldn’t know my high endurance athlete of a husband was even sick. But we are extremely concerned about how this went from a 2 to a 146 so quickly, the extremely large tumor size, the spread, and also the Gleason 10 very high risk case. Struggling to find someone to do the chemo and “triple therapy” and overall feeling pretty defeated after we were told yesterday that the 5 year survival rates “are what they are” and the Hopkins doctor said his radiation plan still has a 40% chance of failure.

Looking for input and also to hear some success stories of Gleason 10 fighters. Thanks

Post Edited (StephanieAndEric) : 8/17/2022 8:27:47 AM (GMT-7)

S&E - Very sorry, thats a tough diagnosis. But its manageable. I have no specific input on treatments, I'm not that knowledgeable in advanced cases, I mosty just wanted to say welcome to the forum. There are a lot of very knowledgeable guys here many of whom have personal experience with tough cases similar your husbands,

One that comes to mind is member Todd1963. While he is not Gleason 10, he was diagnosed in his 40's with a PSA of 3200 and extensive mets. I hope he chimes in here. His diagnosis was over 10 or 12 years ago and he is doing well and living a fun life.

The reason i bring his case up is this: You mentioned 5 year survival "is what it is". These stats are valid in large groups. But they really dont apply to any one individual. Think of sitting at a blackjack table. The odds are clearly in the favor of the house. And if you play for 12 hours straight you will surely lose money. But if you play for 20 minutes you've probably got a 50/50 shot at being a winner.
Its similar to statistics in cancer. Take a large group and the bell curve will show a lot of patients congregating the middle, but many patients will live longer, some much longer.

Its understandable to feel you are defeated. But fight it, the advances made in treating this , even over just the last 5 years, have been incredible.

No doubt you will get a lot of good feedback, so stay tuned. And good luck

That is indeed a very shocking diagnosis. Out of left field. I agree with JNF, there is a group over on Healthunlocked frequented by guys in similar shape.

https://healthunlocked.com/advanced-prostate-cancer

additional terms you want to get smart about
PSMA Lu-177/Ac-255/theranostics
BITE trials

and probably the most important is you need to get the biopsies tested for genetic defects. if the cancer has certain defects, e.g. MSI-H (microsatellite high instability), and others, that would qualify your husband for treatment with some pretty amazing immunotherapy drugs (e.g. keytruda) that are known to work wonders with people with the right kinds of defects. The defects are rare but are often associated with really aggressive prostate cancer variants.

As Mumbo stated, Dr. Kwan is legendary in his approach with advanced stage PCa. Another is Dr. Oliver Sartor at Tulane University, in New Orleans. You can arrange with either, or both, to send information and get a tele-visit for their assessment and advice. That can certainly help you make treatment decisions. They may also have clinical trial suggestions.

Steph&Eric-
Welcome to the club no one wants to belong too. My Dx stats not quite as high as yours but Grade is 4+3=7 and Stage 4, with 8 mets spread to bones. But I am a pretty good success story that you'll like. Dx in 2012 with PSA of 71, on Zytiga since August 2014, currently 7 years and 9 months in remission, PSA is currently undetectable. I have heard Dr Kwon speak and also on you tube and many videos. He also is seen by a few folks here, like ISU Cyclone among others. Seems like a very good Doc. Maybe he could recommend an Oncologist someone that thinks out of the box like he does. Mayo is a leading Treatment Center. hope you an sty with them. Where do you live?
As always Keep the faith!

Hello, Eric and Stephanie ~

Reaching out to you, with encouragement, understanding, and support.

We have common threads woven into our "story" ... you do not stand alone, for all of us here stand alongside you.

I was diagnosed, out of the blue, as a new school year began for me as a teacher. In between "Meet The Teacher Night" with my new 44th graders and recess duty and lessons to teach, I was faced with an unexpected diagnosis of prostate cancer.

Cards on the table ~ despite the fact that my grandfather and father had also been diagnosed with prostate cancer, nothing prepared me for that moment. I represent the third generation of my family diagnosed with prostate cancer.

Not wanting to miss school days, I would drive to the clinic after school, and faced a whirlwind of tests and scans.

One test led to another ... and good news was hard to come by during those days.

I couldn't sleep, I taught all day, and tossed and turned at night.

I searched the internet for stories that would bring me some sense of hope. Then I found this website.

That's when I finally felt I wasn't alone.

In the whirlwind of those diagnostic tests, my PSA was skyrocketing with each subsequent trip to the lab.

Scans revealed the prostate cancer had already infiltrated both of my lungs. I didn't see any smiles on my doctor's face that day.

Instead, he pointed to my lung scans which looked like they were "peppered" with buckshot. Each splotch was evidence of metastatic prostate cancer.

Treatments began in haste. The first ADT shots were impactful ~ and my PSA began declining. It was the first time I saw my doctor smile ~ faintly.
That's when I could begin to see flickers of hope ...

I knew that I needed to prepare for a battle. I put together a cohesive medical team that worked together.

There was one doctor who did not embrace the concept of being a "team player." I no longer see him, and there are no regrets in that.

You have to focus on where you are TODAY and just face forward, one day at a time. I have learned to not cross bridges until I reach the river.

I chose doctors who could lead me forward, in proactive ways. One of them was Dr. Eugene Kwon, at Mayo Clinic.

I met him in the fall of 2015 and various scans were run, at his request, including the choline PET scans, which he brought to the forefront. Meeting Dr. Kwon was an unforgettable experience! He is visionary!

A busy fellow, he is known as the "early bird" of the Mayo Medical Campus ~ getting there before the city of Rochester, Minnesota, even arises. He works through lunch. He is a maverick in his approach. He tackles tough cases. Patients fly in from across the globe to see him.

On my first trip there, I met a man who had flown thousands of miles from CYPRESS to see Dr. Kwon. I have met many other patients of Dr. Kwon's since.

At my first consultation, he telephoned my main local oncologist and I watched my TEAM form in front of my eyes. Unforgettable moment. He TOOK the time to make a difference for my care plan, going forward.

I have pursued various treatments ~ ADT injections, chemotherapy, radiation, and I have been on ZYTIGA (Abiraterone Acetate) for seven years ~ a relatively new breakthrough medication when I first started taking it.

I was my local oncologist first prostate cancer patient to go through upfront chemotherapy infusions upon diagnosis & his first patient to try ZYTIGA. Please see my treatment history printed beneath my signature.

This multi-layered treatment plan has paid dividends. I have learned that the tougher the treatment, the greater the dividend can be. Chemotherapy helped me, and so did radiation. ADT injections continue to help me, and so does ZYTIGA - a daily medication.

My lessons learned?

Summon your inner strength. Get started on proactive and aggressive and multi-tiered treatments.

Assemble the best medical team you have.

Remember the importance of your family, friends, and faith ~ in whatever form that takes for you. Don't forget your usual hobbies, activities, & and interests.

You have a cancer diagnosis, but it's a chapter in your life story now - NOT the title of your BOOK OF LIFE. We are all more ~ much more ~ than our diagnosis.

I have managed to stay active and I was fortunate that I was able to keep teaching full-time during all my treatments. It wasn't always easy, but it was worth it to maintain normalcy in my life.

For me, a daily walk settles the soul & I explore state parks, trails, and lake trails every chance I get. Rest when you need to ~ but stay as active as you can, in the midst of treatments ~ mentally and physically.

Naps and an earlier bedtime can help pull you through tough treatment days. Save your energy for the important things in life & let the rest go!

The other thing I have learned ~ you have to become your own advocate. None of this comes with a road map, so you have to blaze your own trails. Follow up with your doctors. Write down questions for every appointment. Become educated on the treatments proposed.

This website is a tremendous resource for support. Ask questions here, seeks support, ask for first-hand experiences with a medication or treatment.

I'm going to stand alongside you in the battle trench, starting at this moment. Consider me a comrade, a compadre, and a fellow traveler. I will walk alongside you & support you, in any way I can ... and that's what this website is all about.

You already can sense the support from all the others who are reaching out to you ... a collective "band of brothers" ... and brotherhood is a powerful thing.

I hope something in my story will encourage you, light a candle of H-O-P-E for you, and let you know you have other "brothers in the battle" here ~ and we are RIGHT HERE!

Handshake, encouragement, & fellowship ~ from "one brother to another" ~

CYCLONE ~ # Iowa State University

Thank you everyone for the encouraging words and support as we all battle this disease.

Boomer53

Dear Eric and Stephanie ~

Continuing to think of you both ...

Been thinking of you since reading your post.

Sending my encouragement & support, each day!

With caring thoughts,
CYCLONE ~ # Iowa State University

Thank you everyone for your comments and feedback. This has been an incredibly tough learning curve, trying to absorb all we can while also living in those initial stages of fear and shock. We still have so many questions and have not found a lot of clear answers unfortunately. Although we tried to advocate for an aggressive approach, which Dr Kwon at Mayo had recommended, we were unable to convince any of the 4 other oncologists we found to prescribe chemo up front (because he’s “low volume vs high”). They did start him on Orgovyx and Abiraterone and his psa has went from 146 to 3.6 in 2 months. During that time we did find out that he has a genetic mutation (CHEK2), on top of his high risk gleason 10, but we’ve been told he can’t be given anything for that until he becomes castrate resistant. Additionally there is a mass on his adrenal gland and further testing has determined it is NOT a benign adenoma (washout features on CT were not high) but MO doesn’t want to do the biopsy as the Endocrinologist suggested because the mass did not have uptake on PSMA pet scan so he’s confident it’s not prostate cancer and doesn’t advise any further testing. Bottom line, we feel like nobody has taken ours and Dr Kwons concerns of the aggressiveness of this case seriously because there is no confirmed bone Mets (“yet”!). Or perhaps it’s that the MO’s we’ve seen do realize my husbands prognosis is very poor and they don’t feel it’s worth the fight to go outside standard of care to prescribe chemo etc idk (heartbreaking to even say). Not sure what way to go, or if there’s even anything we can do, each twist and turn knocks us off our feet (like the adrenal gland mass and the MO saying “no biopsy, let’s just redo a CT in 3 months and see if it’s grown”). My husband’s PSA went from a 2 to 146 in 29 months (which was the next time it was checked at age 50) and the tumor got so large it became affixed to other organs. “Wait and see” is hard for us, but perhaps that’s a part of this journey we need to accept?

Hello, Stephanie and Eric ~

Above all else, we are all here to lend support, share first-hand experiences, and hand you both a paddle and pair of life jackets, and we've got reserved seats for you on the LIFEBOAT we all ride in ~ together.

Our cases have some common threads ~ including a rapidly rising PSA over 100 ~ discovered unexpectedly & some inherent complexities. I was still in my 40s when first diagnosed, and it was all so unexpected.

I remember feeling like I was in a whirlwind ~ worrisome news, biopsies, scans, more tests, skyrocketing PSA scores, and sleepless nights.

My biggest concern at diagnosis was the fact that prostate cancer had already spread into both of my lungs, by the time I was diagnosed.

That was a tough day, hearing that news.

My initial treatments brought newfound H-O-P-E. Subsequent, multi-layered treatments since then have helped me maintain my health goals.

I have stood at that "fork in the road" where you stand today. Like you, I had to become my own advocate. My first doctor refused to try anything but LUPRON and saw only brick walls. I benched him, and sought out a local oncologist who opened doors in those brick walls.

Later, Dr. Kwon at Mayo Clinic joined my medical team. Abiraterone Acetate ("ZYTIGA" is the brand name version), ADT injections, a series of TAXOTERE chemotherapy infusions, and later a round of radiation have been my main treatment weapons.

My toughest treatments have paid the greatest dividends, and I continued teaching full-time through all of it, for which I give thanks.

You have had TREMENDOUS results from your initial treatments. That's exactly where I was, a couple of months after treatments began. My initial PSA tumbled down to single digits, and eventually crept even lower.

Treatments being newfound H-O-P-E. I have pursued every course of treatments my doctors have suggested and I see my main local oncologist every month, to continue setting new health goals for my future.

I'm getting ready to celebrate my 10th Christmas and New Year's Day this holiday season. I give humble thanks for each day, and I pause to reflect at every sunrise and sunset I see on the Midwestern horizon.

Sending you 100% of my support!

CYCLONE ~ # Iowa State University