The waiting is the hardest part

Pulling for you Stephen!

Jim

Best of everything to you, Stephen!

Djin

Best of luck to you. Yes the waiting is a bummer.

Glen

Thanks everyone for the support.

So the results were released to me today, and I think it is relatively bad news....maybe.

There was only one hit on the psma scan, 'there is a tracer avid right upper lobe 8x6mm nodule that demonstrates SUV max of 5.23"

They want to send me for a CT scan with contrast.

They do not think that is a prostate cancer met because its rare to get a lung met without involvement elsewhere, but its cancer and you never know. I did have a liposarcoma 10+ years ago in my lower back just above my left buttock and was being monitored for that before my PCa diagnosis.

I suspect eventually they need to biopsy that thing. Not sure how that would work. I hate grainy images. I wish they would just do something that gives them the answer immediately.

So generally speaking I think this is bad IF
- its a recurrence of my sarcoma,
- no other areas of uptake were noted. My PCa is still hiding.

it however might be good news IF
- it is actually PCa (5mm by 8mm is pretty small and my PSA is still relatively low)
- is in a treatable location (all I have is the report no pictures)

I went for bloodwork today to get my psa and other things MO's care about. My last PSA was around 0.8 three months ago. What if they gave me a lupron shot and did a repeat CT scan in a month. A sarcoma would care less about lupron and would remain. A PCa met would vanish.

Or it all could be a false positive, and I am thrown back into the waiting game. Does anyone know if an "SUV max of 5.23" is terribly bright?

There ARE a few of us here who had metastatic spread into our lungs, at diagnosis.

I am one of those people.

I did have a surgical procedure known as a lung wedge resection biopsy, to confirm that the cancerous lung nodules that were peppered throughout both lungs were, indeed, metastatic prostate cancer. They were ~ which means it wasn't labeled "lung cancer" ~ so to speak ~ but metastatic prostate cancer.

I spent a couple of days in the hospital. A drain tube was inserted into my lower chest, where a few of the suspicious and suspect nodules were lurking in my lungs. It wasn't a Sunday walk in the park, but it led to full assessment for my battle plan.

That was in 2013. A few years later, tissue saved from that biopsy was used in a genetic test to see what future treatments might have an impact. My grandfather, my father, my only "blood" uncle, and me have all been prostate cancer patients ~ which led to the interest in genetic testing.

Initial injections of ADT (initially LUPRON, later FIRMAGON, and now ZOLADEX) had a powerful impact on my metastatic lung nodules.

After a few months ~ scared beyond words that day ~ I underwent an updated lung scan. I was shaking in my shoes afterwards, waiting for the doctor to share results.

I was anticipating dire results, to be honest ... because so many of my initial tests had brought bad news so unexpectedly ... and I was still in my 40s. Truthfully, it was a surreal experience. It didn't seem grounded in reality. Nothing prepared me for those moments.

My updated lung scan looked grainy ~ and he began pointing to gray images that showed resolution of the lung nodules.

It was the first time I saw traces of a smile on my doctor's face.

Those grainy areas ~ too many to count ~ had turned from growing cancerous nodules ~ peppered throughout both lungs ~ to grainy scars, and my PSA continued to plummet. At diagnosis, my PSA was skyrocketing over 100, ever time it was retested.

I hope you find hope in my story. I think ADT injections could certainly be a first step. Something to ask your doctor ~ SOON!

My PSA dropped by 100 points after the first injection, that first month. In fact ~ that's what began the "starving and strangling and shriveling" of my cancerous lung nodules!

Yes, a lung biopsy is possible. It was one of the first steps of my journey, when I was diagnosed in 2013. See my treatment history, below my signature.

Something else to consider ~ a second opinion, from a top-notch oncologist. Scans can easily be shared, electronically, these days. You can even have a virtual consultation, with an expert from miles away.

I will continue to follow your posts. I'm sending you my encouragement and support, Stephen S.!

We're all fellow "brothers in the battle" here! No one fights alone!

Support, fellowship, & encouragement ~
CYCLONE ~ # Iowa State University

Hello, Stephen ~

I have stood at that fork in the road, where you find yourself today.

Treatments brought me hope, starting in 2013. I quietly worried I wouldn't make it until Christmas that year. There's a lot more birthday candles on my birthday cake since then. I hope my story can bring you some encouragement. H-O-P-E is a powerful thing!

Cards on the table, both lungs looked like they had been peppered with buckshot. No evidence of spread elsewhere.

This was NOT classified as lung cancer, I learned. It was metastatic prostate cancer, with lung involvement. It was a distinction I learned in those first days.

My doctor wanted verification it was metastatic prostate cancer that had infiltrated my lungs. A surgeon extracted a few nodules, which were biopsied in the lab. I was a surgical patient, a drain was put in, and I spent 2 or 3 days in the hospital. It took some days to recover my strength.

But it set me on my path forward! My doctors knew which kind of beast we needed to start attacking!

Get a great medical team rallied around you. Be aggressive and proactive. Get a second expert to weigh in on your situation. Cancer doesn't take vacations.

You have to go to bed at night knowing you are doing all you can do. Get GREAT doctors and they will lead the charge forward ~ as needed, if needed!

Remember, too ~ don't cross any Bridges until you get to each river. Take walks and stay busy and follow normal routines. Concern leads to action, worry gets you nowhere.

Remember, the arsenal of weapons has expanded since I was diagnosed in 2013. I always focused on prayers that the next fellow in my shoes would have a greater arsenal of weapons waiting for him.

Remember, when needed, treatments bring HOPE. Here I am today, just returning from a trail walk. The year 2013 is now almost a decade ago. I'm a thankful man, blessed by doctors who moved heaven and EARTH to get my treatment plan going. They continue to be a GODSEND.

I can't promise you it will all be easy, but I can promise you it will be worth it.

Consider me a compatriot & compadre, who is sending you my support and encouragement, Stephen!

In fellowship,
CYCLONE ~ # Iowa State University

Thank you for sharing this, Stephen. I sincerely hope that it is nothing serious. Or that, if it is something, that it is something that is more treatable.

My husband is awaiting testing because of something that showed up on his PSMA scan (PYLARIFY) in January. At the time, they noted a nodule in one of his lobes. It showed up on the CT part with no tracer uptake, so they reported it in the "non-prostate cancer" area of the report.

My husband had a repeat chest CT in July to see if there were any changes. Quite unexpectedly this time the chest CT showed several small nodules that were not visible back in January. The radiologist's report theorizes that the nodules were visible this time because the chest CT was done with a "breath hold"--but there was no breath hold with the PSMA scan & CT. It could also be that they weren't there back in January but we don't know.

My husband's MO does not believe it is PCa cancer or lung cancer. And we're hoping he's right. My husband will have a repeat chest CT in three months and we'll know more then. (The MO's thinking is that it's not PCa because there was no tracer uptake. And it's probably not lung cancer because there was no change--as far as they can tell--in that one nodule that was seen in January.)

Cyclone: your story does give hope. It's incredible how much you have gone through this past decade. Despite all that, your optimism and good spirit always shines through in your posts.

As someone said above, try to not overthink it. Easier said than done I know.

Good luck,
Melaine