PSMA Pet reveals spread to bones, lymph glands

Thank you in advance for reading my story, and offering me whatever guidance you can. Understandably, I'm a little nervous writing in. Have kept news of my disease confined to close friends and immediate family. I appreciate the extended family that this group provides! Please excuse me if I haven't included the right technical terms, doing the best I can. I’m a 66-year-old Male, diagnosed with Stage IIIC PC in February 2019 (cT3b cNX cMO). The PC has now returned, confirmed on a 9/26/22 PSMA Pet Scan. (PET/CT F-18 DCFPYL). The summary finding follows: “Widespread metastatic disease as demonstrated by multi-station PSMA avid lymphadenopathy throughout the lower neck, thorax, abdomen, and pelvis as well as multiple PSMA avid osseous lesions and pulmonary nodules.” I have included the complete findings below. For my latest treatment, I had my first Eligard shot on 10/5/22 and I anticipate that my doctor will prescribe an additional androgen blocker, and then the question will be whether I do the “triple-play,” and include chemo (docetaxel), or hold off on the chemo for now. My biopsy determined that my cancer is adenocarcinoma, not neuroendocrine. I will have a CT scan next week to determine whether it’s high or low volume.
Some background which might be helpful. Prior to my 2019 diagnosis, I had annual physicals, usually with DREs and PSA tests which hovered between 2 and 3.5 or so. My PSA at the time of diagnosis was 3.4. My Gleason scores were a mix of 7, 8 and 9 (21/21 cores) and the MRI showed invasion of the transition zone and seminal vesicles and extracapsular extension, but no evidence of cancer in my lymph glands or bones. My treatment: 18 months of Lupron, five weeks of daily (5x/week) EBRT, two HDR brachytherapy procedures, and I was admitted to an immunotherapy clinical trial for Nivolumab which involved several infusions. My hormone treatments ended in late 2020 and I had been going in for quarterly blood work to check my PSA. My PSA levels went quickly from 3.4 in early 2019 to undetectable and stayed there until May 2022 when it went to .41, and then in August 2022 it went to .53. By September 2022 it reached .93. In early September, I went to see an orthopedic surgeon for pain in my left hip and thigh. He did an x-ray and then ordered a pelvic and lumbar MRI due to my cancer history. The lumbar MRI revealed the lesion in the L3 vertebrae and enlarged lymph glands. He recommended I immediately get to my cancer hospital, Moffitt in Tampa, for more diagnosis and treatment.
I now live in Massachusetts, so I have transferred my care to Massachusetts General Hospital, under Dr. Philip Saylor. MGH will be doing my CT scan, as well as the germ line and somatic profiling to determine the genetic mutations.
Big questions to resolve in the near future:
1. Is the cancer low or high volume, meaning should I do doublet or triplet (+ chemo) treatment?
2. What combination of therapies should I take for treatment?
3. What trials are out there that might make sense for me, and how might the treatment I take now affect my ability to access a trial that might make sense?
4. My PSA level has never been a good indicator of my PC -- what should I infer from that, and should I just rely on PSMA Pet scans going forward?
5. What else am I missing, or should I be doing?
THANK YOU for your input and advice!


9/26 PSMA PET Scan Findings:
Findings:
Reference values:
Blood pool SUV max: 2
Liver SUV max: 6
Parotid gland SUV max: 16.5
Prostate/Prostate Bed: No focal abnormal uptake within the pelvic floor or prostate region. Fiducial markers within the prostate.
Lymph Nodes: Multiple radiotracer avid lymph nodes are present throughout the lower neck, thorax, abdomen, and pelvis. Reference
nodes include but not limited to:
- Left supraclavicular lymph node measuring 2.8 x 2 cm with SUV max 30.5 (CT 91)
-Right lower paratracheal lymph node measuring 3.2 cm with SUV max 26.2 (CT 112) -Right hilar lymph node measuring 2.7 x 2.7 cm with SUV max 22.8 (CT 121)
-Left periaortic lymph node measuring 2.4 x 1.2 cm with 32.1 (CT 191)
-Aortocaval lymph node measuring 2.5 x 1.7 cm with SUV max 36.8 (CT 193)
-Right common iliac lymph node measuring 1.0 cm with SUV max 29 (CT 233) -Right external iliac lymph node measuring 2.9 x 1.5 cm with 28.9 (CT 248)
Bones: Multiple radiotracer avid osseous lesions are present. Reference lesions include but not limited to: -C2 vertebral body, SUV max 22 (CT 61)
PET Findings
-T10 vertebral body posteriorly on the left, SUV max 10.1 (CT 153) -T12 vertebral body on the right, SUV max 9.7 (CT 172)
-L1 spinous process, SUV max 15.8 (CT 189)
-L2 vertebral body posteriorly on the right, SUV max 10 (CT 194) -L3 vertebral body anteriorly, SUV max 32.8 (CT 200)
-L5 vertebral body anteriorly on the right, SUV max 12.5 (CT 227) -Right iliac bone, SUV max 5.3 (CT 251)
Other: Increased activity within several right upper lobe pulmonary nodules. Reference nodules include: -0.5 cm right apical nodule, SUV max 4.9 (CT 102)
-Right upper lobe nodule measuring 0.7 x 0.6 cm with SUV max 9 (CT 111)
-Right upper lobe nodule measuring 0.8 x 0.7 cm with SUV max 7.6 (CT 109)
Multiple tiny micronodules bilaterally with mildly increased activity.
Soft tissue nodularity with increased activity within the intercostal spaces of the sixth-seventh and seventh-eighth ribs anteriorly on the left, SUV max 9.8 and 9.9 respectively (CT 167 and 176 respectively).
There is normal radiotracer distribution within the liver, spleen, GI, urinary systems.
Impression:
1. Widespread metastatic disease as demonstrated by multi-station PSMA avid lymphadenopathy throughout the lower neck, thorax, abdomen, and pelvis as well as multiple PSMA avid osseous lesions and pulmonary nodules.

Islandboy - Really sorry to hear your story, bad deal any way you look at it. You are in a great location to get care and your doctor looks to be a solid choice. I have only read about cases like yours and they are very rare. There is really no standard of care for something like this so next steps are not so clear. I am guessing that they will want to try everything at the same time with you (2 HT drugs + chemo) and possibly spot radiation to painful areas. It may be worth asking the doctor if there is anyone who has had any luck treating this rapid expansion of low PSA PCa that could be involved with your care. No time to be timid about anything. Best of luck with your new residency, Boston is a nice town, lots to see and do other than medical centers and hospitals.

Islandboy,
You raise a very important point about the interpretation of the newer PMSA scan. It is possible there are false positives, or just flat out wrong interpretations. Reading images isn't always straight forward. I remember my MO taking me through a tour of one of my CT scans. There's a lot going on. I think it's reasonable to hope the CT scan will come back with results tilting a lot better in your favor.

The forum has a member who has had a remarkable response to Pluvicto. I have included a link to that thread.

I'm sorry if my previous post seemed matter-of-fact,, but sometimes it's not easy responding to a hard post.

All my best hopes to you.

https://www.healingwell.com/community/default.aspx?f=35&m=4263170

Hello, Island ~

We're here for you. You've found a place where fellowship and support abounds.

I was in my 40s, starting a new school year with my 4th graders, when I was diagnosed in 2013.

I wondered if I would survive until the end of the school year, and who would finish the school year for me. I remember being grateful for being able to celebrate Christmas with my family, thinking it might be my last holiday with them.

These were the private thoughts I harbored, deep inside.

The series of diagnostic tests and scans brought very little good news. My PSA skyrocketed to nearly 140, climbing by leaps and bounds.

The worst day was the day they decided to scan my lungs. The prostate cancer had already spread - infiltrating both my lungs.

My lung scans looked like "buckshot" had peppered both lungs. Cancerous nodules were spread throughout both lungs. My doctors seemed grim.

They stated treatments needed to commence, at once. I taught school every day, and went to appointments after school.

My first lesson learned? Keep busy, physically and mentally! Cancer becomes a chapter in our lives, but don't let it become the title of your "Book of Life."

My initial ADT injections packed a mighty wallop and my PSA began to tumble.

I asked to pursue chemotherapy and was the first fellow at my clinic to go through the "early chemotherapy approach" ~ shortly after diagnosis.

I was the first fellow at my treatment center to start ZYTIGA and to undergo new geneic tests, as my grandfather, father, uncle, and I have all been prostate cancer patients, over the course of three generations.

Later, 45 radiation treatments were added. These continue to pay dividends.

My second lesson learned? My toughest treatments have paid the greatest dividends.

I'm still teaching school ~ I'm getting ready to celebrate my 10th Christmas since diagnosis in 2013. I have much to be thankful for ...

There are NEW options available now that weren't available when I was first diagnosed. Newer treatments such as PLUVICTO hold such promise!

My most important lesson learned? Become your own advocate. Push for a multi-layered treatment plan, and you have already started one!

Every treatment I have undertaken has helped me. I "pushed" for chemotherapy and ZYTIGA ~ when these were newer options.

I also benefitted from seeking additional expertise, by visiting Mayo Clinic in Rochester, Minnesota, and consulting with Dr. Eugene KWON, who tackles prostate cancer cases with complexities.

Never hesitate to seek out a valued second opinion.

I'm thankful treatments have already begun for you.

My treatments began the day I was diagnosed. I knew I was stepping onto a battlefield from that very day ...

Here's hoping your initial treatments are already working well.

I send to you my very best & to assure you that no one here fights alone.

We all stand alongside you here ~ as fellow compadres & "battle brothers!"

Handshake, fellowship, camaraderie ~

CYCLONE ~ # Iowa State University

Islandboy, Sorry to read of your hard situation. Given the widespread disease imaged by the PSMA PET, my personal thought would be that this is not a situation calling for treatment nuance, and that a triple play is warranted. Being at Mass General, you are in the heart of one of the world’s great medical complexes. As for LU-177, several more trials are underway. You might want to ask your MO about compassionate entry into a trial before embarking on the standard of care. The FDA approval to date applies only to men where all therapies, including chemo, have failed. Unlikely therefore that insurance now would approve use of the agent now before all therapies have been tried. Wish you well… Bill

The FDA approval basically said:
...the FDA approved Novartis’ Pluvicto, previously known as 177Lu-PSMA-617, for patients with metastatic castration-resistant prostate cancer (mCRPC) who test positive for the prostate-specific membrane antigen (PSMA) with an FDA-approved imaging diagnostic agent. Eligible patients must also have already tried an androgen receptor inhibitor and taxane-based chemotherapy.

However, the FDA approval also approved PSMA scans based on:
the FDA has approved the PSMA PET imaging agent 18F-DCFPyL (Pylarify) for identifying suspected metastasis or recurrence of prostate cancer.
Pylarify is indicated for patients with suspected prostate cancer metastasis (when cancer cells spread from the place where they first formed to another part of the body) who are potentially curable by surgery or other therapy. Pylarify is also indicated for patients with suspected prostate cancer recurrence based on elevated serum prostate-specific antigen (PSA) levels.

It seems to be common recently that some men are getting PSMA scans before and after original biopsies so something has been changing in practice. You never know when Plutico will be used outside the orignal approval limits in practice. This is something your doctor should be well versed in. The compassionate use program can be used when justified also. My guess is that they will want to fail the current standard first but you never know.

Island boy, I think LU-177 is so new, I wonder if their is enough data to indicate if earlier intervention would be more effective than the standard of care, or not.

Hi again,

Here's a link to RandyD's post about his PCa journey, and how he probably had both adenocarcinoma and small cell (also called neuroendocrine, I believe) at the time of his original diagnosis:

https://www.healingwell.com/community/default.aspx?f=35&m=4228580

And here's another thread as well:

https://www.healingwell.com/community/default.aspx?f=35&m=4266726&g=4275677#m4275677

Randy last posted in 2021 and, at the time, was doing well fortunately.

Apologies again for mentioning this rare cancer. I know that you are in good hands but there are also those who are lurking who might benefit from this information.

Hang in there

Post Edited (Melaine) : 10/16/2022 4:10:32 AM (GMT-7)

Remember, too ~ labs & scans can be shared electronically, nowadays.

I have had friends who had virtual consultations with Mayo Clinic & other noted hospitals.

You're getting your armor on ~ this is the time to grab the mightiest swords and weapons from the castle armory & shine that silver battle shield.

I met Dr. Kwon two years into my treatment journey.

Looking back, I would have sought out that "second set of eyes" sooner - but adding him to my team was timely, in my case.

There are other noted oncologists, as well ~ your case has complexities that merit that valued second or even third opinion, in my humble thoughts.

Wanting all the best for you ~ I will watch for your next posts & updates!

In fellowship,
CYCLONE ~ # Iowa State University

Hello, Island ~

Good to hear from you. These scans are insightful, and will help guide your medical team.

If chemo is indicated, we have a thread here that will help you navigate through that.

I met Dr. Kwon in 2015, seven years ago now.

He is a maverick, in that he is known to "push the envelope" when it is needed ~ for a more impactful treatment protocol.

He is one who believes in taking a multi-layered treatment approach.

When others were hesitant, he pushed forward and got the radiology team at Mayo to design a 45 treatment radiation treatment plan going for me. It continues to pay dividends for me ...

I think newer treatments like PLUVICTO might be something he would recommend.

He is famous for saying, "If we always do what has been done for complex cases, we are going to just keep getting the same results."

That's where his reputation as an innovator comes in ... a maverick. A trailblazer ...

He is also noted for formulating individualized chemotherapy "cocktails" to meet the needs of each patient.

Dr. Kwon has a unique persona. He is known nationally and globally. Patients fly in from all over the globe to consult with him. He is brilliant and does not shy away from tough cases.

I recommend you watch a couple of his presentations online - perhaps on YouTube or such.

You will get a sense of his style, humor, insight, perspective, and persona.

I have never met anyone like him. He has tremendous expertise.

With my best,
CYCLONE ~ # Iowa State University

Lam = Kwon?

My reading indicates that the low volume vs. high volume criteria is not well determined and may be more similar to the oligometastatic cutoff of less than 5 mets with other criteria being as important. There are many articles on this subject, all of which are pretty current and are trying to make sense of the recent studies in practice.

I am sure you have read many of these articles by now and are as confused as I am. While many here may know more than the next guy with PCa “ie: experts?”, the disease is incredibly complex and confounds the medical profession like many cancers. All you can do is read as much as possible and try to get the best doctors you can that are up on all the latest treatment information. Dr. Kwon is well respected and would be on my top 3 list of must-see doctors when the obvious treatments are history.

LU-177 is only a new treatment to the USA.
It has been used for several years in Europe and Australia.

I just want to offer a little personal advice.
Slow down and breathe.
I was diagnosed 9 years ago last Friday 10/21/2013.
Tumor grade -- Tumor=pT3bN1
Gleason 9, Positive lymph nodes, seminal vesicle invasion, positive surgical margins, perineural invasion, extra-prostatic extension

I AM DOING GREAT!!!!!!!!!!!!!!!!!!

YOU WILL TOO BROTHER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I would welcome your thoughts and advice on a quandary I'm in. My doctor at MGH/Boston put me on Lupron in early October, and has scheduled me to go on Nubeqa by mid November, with 6 infusions of chemo to begin sometime in December. Meanwhile, I've reached out to Dr. Kwon at Mayo who can see me in Rochester on November 30. He has indicated he thinks I need "more aggressive" treatment but I'm not sure what that means. He's also mentioned, in one of his videos, that he has had better success with chemo coming before the 2nd generation ADT, like Nubeqa. His office told me if I start Nubeqa before I come visit, that will make the blood work less meaningful/accurate for his purpoases and thus pointless to see Dr. Kwon. So, basically, I'm at a point where I would have to delay starting treatment to get what I think is important input from Dr. Kwon, or move forward with the current treatment plan and forego Dr. Kwon's involvement. I have also reached out to Dr. Mark Scholz to get this input. I would appreciate any thoughts that anyone has about my situation and what direction I should take. THANK YOU!!