What Stage Were You At When First Diagnosed?

[jazj]

I'm curious, of those here with Stage IV. How many were first diagnosed at an earlier stage, what stage was it, and were you having annual PSA tests done before you were diagnosed? What was your Gleason at diagnosis?

[Magnus1964]

I did not have any PSA tests done until I saw a urologist. My PSA was 39 and I was then diagnosed as stage IV.

[Avanat]

My husband was seeing his urologist regularly and getting his PSA checked annually. He was diagnosed with Stage IV, with mets throughout his bones and some lymph nodes, at initial diagnosis. His PSA was 3.8. His Gleason score was 9. We were told it was rare to be diagnosed with such aggressive cancer at the outset and be asymptomatic.

We are at the start of year 3 and he is still asymptomatic. His side affects are from ADT, not cancer. I hope he emulates Magnus and lives a long time with it. Life is still good and we plan on enjoying life together as long as we can. 💕

[jazj in reply to Avanat]

3.8 PSA with Gleason 9 Stage IV? Wow. I've seen articles discussing how elevated PSA potentially winds up with unnecessary biopsies. That is an extremely polar opposite example.

[Avanat in reply to jazj]

That’s one of the things that makes this disease so difficult because it can be so different for each man. Same for treatment. So many different treatments and what works for some doesn’t work for others.

[Maxx2006]

Stage 4 Gleason 9, PSA 350 Was last tested 18 months prior.

[westof]

PSA started to increase in 2017 and started doubling (fast) until it peaked at 28.

Did a MRI fusion biopsy (4/19) and it was Gleason 9, however, stage 3.

After HDR Brachy, 25 days of IMRT (at MSK) and hormone therapy...

All of my scans (last summer) indicated the absence of any mets and my other organs were deemed "unremarkable"!

I'll turn 74 in December, still work a 6 hour day and feel great.

As a side note, went for an MRI for my back today (no big deal and already got the results, NP I'm still all of 73!)

The 63 year old MRI tech asked if I had a "cancer" history and my reply was...

He went on to explain that his dx was 15 years ago and that his only option was RP and to this day he is doing fine ( without going into details), however , is still experiencing periodic bouts of pain and thinking of retiring!!

I directed him to our forum and hopefully we will provide him with hope and guidance.

Best to all,

AJ

[DaveBSD]

Stage IVb, starting with two PSAs around 27, a Gleason score of 4+4 in, oddly, only one core out of 12, although some have suggested the TRUS biopsy missed much of it. I guess that's not really much of an issue now. What really grinds my gears is that my previous urologist missed three separate high PSA tests when this could have been caught early (the highest of the three was 5.02). In the hopes of keeping her from harming any other patients through inaction I filed a complaint against her.

[CAMPSOUPS]

I finally thought I had stomach cancer.Primary Dr. thought I had lung cancer.

PSA at primary Dr. came back 1621.

Scans came bone mets skull to shins.

Lymph involvement pelvis to neck.

Gleason 9 but by then I think prostate biopsy irrelevant.

As it were I had a little more than a glimpse of what it feels like to start dying of PC.

Lupron & 6 Taxotere infusions kept the brakes on for 11 months until progression on PSA and scans then Zytiga started w/prednisone.

Zytiga now failing after began a year ago.

Continuous Lupron/Eligard.

2-1/2 years since dx.

[treedown in reply to CAMPSOUPS]

So how much of what you saw originally of your metastes receded with initial treatments? Have you been relatively pain free up until now? Whats the plan after Zytiga?

[CAMPSOUPS in reply to treedown]

Yes lymph nodes in my torso started shrinking shortly after the first lupron shot and the standard bone scans I get show the usual "damage from past mets" but little sign of new ones. My appetite was back like a horse.I've said it before but if I had been the mythical old Indian Chief I would have had the wisdom to go to the mountain and die.

After the 6 chemo infusions Lupron alone was keeping my PSA around 8 for a year(10-11 months).

Before I started Zytiga a year ago with a PSA rise, scans showed new mets and old ones growing and I could feel some of them festering. (hips, femur, shoulder).

I am lucky to have next to nothing in pain. I take Celebrex and add 1000mg of Ibuprofen a few times a day. Cannabis too. Pain I do have is from ligament and tissue damage around the areas where the bone mets were the worse. Mobility of my right arm is reduced by about 40% and I have a little limp in my left leg.

The first and easiest next step is the prednisone to dexamethasone switch and hopefully get 3 months or more out of the Zytiga with that switch.

Then? A lot to consider. Will see what MO has in mind and throw it out here to the group.

As we know going directly to Xtandi wont work or work for long so probably will go with chemo to re-sensitize and then Xtandi. Make the chemo Cabitaxital combo? And add Provenge? And definitely push for genetic/mutational markers of biopsible met(s).

One disappointment I have is it's looking like I am not an outlier. I get about the average time out of treatments that was the average from trials. Maybe a little less.

Could be worse though as I feel for those who burn thru treatments much quicker.

[treedown in reply to CAMPSOUPS]

You may be little off the favorable side of the bell curve considering how you started and being a outlier works in both directions. I often wonder about the degress in pain from 0-10 and you sound like a outlier there. Here I go hijacking a thread again so I'll cut it off there :0).

[CAMPSOUPS in reply to treedown]

Yea I keep seeing a statistical process control chart.

[westof in reply to CAMPSOUPS]

Hmm... Given the back and forth that we have had for awhile, I knew that you are good, however, I've changed that to AMAZING!!✊

Keep on 'Truckin" my friend"!!

Best,

AJ

[CAMPSOUPS in reply to westof]

Your too kind man. Now I'm embarrassed for taking an opportunity to expose myself lol.Truckin friend I am. You do the same.

Some of the things I do work like that wand thing in the Men in Black movie and I forget for awhile what a f'ing mess I'm in ha.

[jazj in reply to CAMPSOUPS]

Did you get the genetic test for BRCA2 to see if PARP inhibitor might work for you?

[CAMPSOUPS in reply to jazj]

Unfortunately now into 2 1/2 years since dx I haven't. Top priority now especially with the current progression.There's always the chance of being BRCA2 treatable.

Needs to be a priority for the other IHC, etc. tumor markers themselves as well.

[Flash64]

Stage IV with no PSA tests prior to diagnosis. Gleason was 4+3. PSA 54. Was 52 years old at diagnosis.

[jazj in reply to Flash64]

I read your post in your 5 years thread. Your treatment results thus far are quite amazing. I imagine your story gives a lot of hope to young guys with Advanced Stage.

[Flash64 in reply to jazj]

Thanks jazj. I guess I'm "lucky".😊

[GAdrummer]

Stage IV, PSA 40, Gleason 4+5, primary doctor died 5 years earlier without telling patient about PSA of 7. Took a surgeon to get him into a new primary doctor.

[treedown]

No PSA tests until 56. Stage 4, PSA 156 suspected LN involvement, asymptomatic. My GP asked "if" I wanted a PSA test and luckily I said yes. Hadn't been to a Dr in 9 years at that point as it is difficult to just get an appt for a checkup anymore and I had no real issues. In retrospect there were a couple very subtle signs. Gleason 7 (3+4) 2 pathologists. Tomorrow is 3 years to the day of official dx.

[CAMPSOUPS]

Luck of the draw. Chemo worked for a year now Zytiga for a year but failing.It was pretty hard to get over the crushing feeling that I had cooked my own goose lol.

I had not seen a Dr. in many years.

[j-o-h-n]

Happy Stage............Then befuddled............

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 07/16/2022 6:08 PM DST

[OFPF16]

Stage IV, Gleason 8s and 9s with 8 different Mets within the body. PSAs more than doubled each month for four months while I went through MRI, Biopsy, Bone Scan, PMSA PET Scan, Bone Biopsy. Started Firmagon for one month, then Abiraterone 1000mg with Prednisone 5mg daily, Lupron every 3 months.

[MichaelDD]

2016 - March PSA 12 / Gleason 4+4=8 . Stage 3. Now metastatic to my lungs stage 4 . My prostate cancer is my "second cancer".

My first was Stage 2 Breast Cancer 2004. Considered cancer-free in my breast. Had a radical mastectomy, and lymph node removal.

[doc1947g]

I was first diagnosted G(4+3=7) 3 on The Right side with a PSA 22.4 μg/L. On my pre-RT Adjustment,they diccovered PCa on both sides so I ended being a Stage IV.That was in 2020. Now after VMAT-RT 3 Gy X 20 fx and Luperon Depot (6 months) my PSA is down to 0.03 μg/L for the last 2 years.

[GreenStreet]

Stage 3. PSA 14 and Gleason 3+4 subsequently upgraded to 4+3 post RP. 7 years ago

[NotAlwaysSunshine]

Annual DRE and PSA. Dx stage 4 at onset.

[KocoPr]

Was testing my PSA yearly since age 40 and it creeped up to 3.8 at age 54 2013, T was 350 so i asked for and got androderm patch and 30 days later psa was 5.3. Biopsy showed 1% of one core only. 3+3 . Put on watchful waiting, then 6 months later instead of annual 12 biopsy i wanted to do the active surveillance as it is less intrusive. Had RP in 2015, TNM stage pT3a, pNX, pMX. 3+4 SEVERITY IN EXTENT OF TUMOR: 3 /5.

(1: <5%; 2: 5-15%; 3: 15-30%; 4: 30-50%; 5: > 50% tissue involvement).

6 weeks later 37 EBRT treatments PSA undetectable till 3 years later. PSMA trial at MSK 2019 shows 3 lymph’s locations in pelvis, 1 lymph loc in chest (mediastinum).

PSA 15.3 May 2022 when i started Lupron.

Also start darolutamide tomorrow July 18

[Peace-to-you]

2016, PSA was 18, biopsy was Gleason 9, castrate resistant but quickly became metastatic. Been fighting ever since.

[strummer]

Dr didn’t feel psa was important as med assoc discouraged it for too many false positives so relied on digital exam. Many classic symptoms but told getting older-66! Saw 2 urologist and neither did psa. End up with stage IV, gleason9, Mets in several areas. Psa 607. Med assoc reversed their thoughts on psa shortly after diagnosis. Tragic

[bud_manning]

Diagnosed 2014, PSA < 3 (I am low expression of PSA). The finger stick prompted a biopsy-- 12 needles, all positive, Gleason- 8 (7)s, 3 (8)s, 1 (9). Poor little thing was eat up with it. They took him away, 11-2014. No show on bone scan or CT until early 2018. 2019, mets in liver and pelvis bone. Did abiraterone, docetaxel, now cabazataxel. Waiting on LU 177 PSMA.

[spouse21]

Here's a conundrum. If someone was diagnosed say, ten years ago, the biopsy precision and imaging weren't as sophisticated as they are now. In 2014, Mr. Spouse21 was Gleason 9 with PSA of 3.38 and staged at 3.2b despite having nearly all cores GL9 @100% and a few GL8 @ 80-100%. Plus he was symptomatic with lots of blood in his urine. So he had high volume of cancer in every core. But scans of that era didn't show cancer outside prostate, so he didn't appear to be metastatic. (Due to a pacemaker, he couldn't have MRI-guided biopsy; no PSMA scans offered back then. Due to abdominal surgery six months prior to PCa dx, he couldn't have RALP, which would've been pretty definitive.)

If he were diagnosed now with more sophisticated scans or biopsy, doesn't it seem likely it he would've been Stage 4, i.e. metastic at dx and not three years later? Currently, the treatment for Stage IV at dx includes chemo right away, ADT, and powerful other medications and/or radiation. But because he was diagnosed at a lower stage--Stage 3--he got ADT + radiation then later 2nd line ADT, then chemo. He's been having an okay run with his treatment, but I can't help but think he might have been Stage IV only the imaging back then didn't see mets.

[lowT163 in reply to spouse21]

I think they said stage 3 to make me feel good. If it’s out it’s out.

[lowT163]

psa 4.2. Tumor out and against the rectum. Gleason 4+4 stage 3 somehow. No confirmation of metastasis so stage 3. But it’s out.