Dx ages of us: I've noticed an uptick... - Advanced Prostate...

Advanced Prostate Cancer

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Dx ages of us

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I've noticed an uptick in younger guys posting recently. I know there are quite a lot of people who may read here, and not post. Is there a non-scientific way to determine the ages of those among us, relative to their age of Dx? When I was Dx, my uro told me I had the prostate of an 80 year old. It also wasn't found via a PSA, but verified by one.

Thanks, Joe

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25 Replies
DFZ4835 profile image
DFZ4835

Very interesting question Joe. My PCa was discovered when I was 68. I was diagnosed with stage 4 with bone mets. I wonder how long I had cancer before it was found. It would also be interesting to know the stage they were in when DX.

Dennis

in reply to DFZ4835

My dad passed back in'77 from a brain tumor. Nothing they could do back then. I had just finished high school. He was 41. I've lived my life not wondering what I would get, but when would I get it. I was totally surprised that all was good until I hit 50, and it was CRPC.

How did you find out your PC? It appears too often, that it's St. 4 when found. At least there are a few new men here who are quite young.

Joe

DFZ4835 profile image
DFZ4835 in reply to

I thought I was suffering from an arthritis attack. I was on vacation in Wisconsin when I got hit with a pain I didn't know could be so severe for arthritis. I had to use a cane to move anywhere. My wife called the rheumatologist I had been seeing and was told I needed to see him ASAP. We cut our vacation short and went home. I went in the next day for blood tests and xrays. He called my home and told me to come back in that same day. When I got there seated in his office he told me I needed to see an Oncologist. He said the bone survey indicated prostate cancer with bone metastasis. He already alerted the oncology department that I would call them the next morning. I called and was seen that afternoon by my oncologist.

So I found out about my PCA from a rhumotonigest.

Dennis

paulofaus profile image
paulofaus

I was diagnosed just after my 49th birthday after some urination issues. 4 months before diagnosis, I had severe femur pain that I had no idea at the time was prostate cancer, metastasised to my bones. I have no idea how long it had been in me before diagnosis, I think at least 1 to 2 years. 1.5 years before diagnosis, I had PSA of 2.5 but I think I had it even then. I know 2 other young guys in my area, one diagnosed at age 43, one diagnosed at age 39.

Scruffybut1 profile image
Scruffybut1

Joe you're so right. I mentioned this to my partner - a nurse- and she responded about greater levels of testing BUT that does not happen! In the UK those with private insurance may well have PSA testing as part of package but not NHS. I self DX'd and we confirmed with DRE and PSA but I am not young (now 70) although with PSA now 0.09 I reckon I am about 40. Will check with my Onco, she put together Stampede trial and others, may let me know ages range. Happy Christmas. And very healthy.

sfboy58 profile image
sfboy58

I was diagnosed at 43 years old and had my prostate removed on my 44th birthday. That was 15 yeas ago. Unfortunately it came back and I am now battling stage 4 CRPC. If my PCP had not started given me a PSA test when I was in my early forties, who knows if I would still be here today.

deano58 profile image
deano58 in reply to sfboy58

Hi sfboy58

If you don't mind me asking,have you got any family history of Pca? I was first Dx 48,( now 58 and metastatic after failed initial treatment), and I often worry about my son getting it,and even worse getting it younger than me.

deano 58

sfboy58 profile image
sfboy58 in reply to deano58

My grandfather had low grade prostate cancer, but he was diagnosed at 80 and died of old age at 93. The only treatment he had was radiation. Other than that there is no history of any cancer in my family.

in reply to deano58

This is one thing I'm concerned about too. At my Dx at 50 1/2, I had it pretty bad. Out of the prostate, lymph nodes involved, no bone mets, blah, blah, blah...So, I'll assume as my doc has said, I've had it a long time. Now, my son is 33. And, he hasn't had a PSA done yet. I ask him all the time, when?

It's frightening, really.

Joe

kjscobel profile image
kjscobel

I was diagnosed in 2012 at the age of 65. I was already at Stage 4 with mets in my bones. My PSA when DX was 23. The DRE showed "nothing to worry about". My previous PSA taken in 2009 was 2.6. I have been on Lupron/Xgeva/Prolia since August 2012. My PSA hit a low of 0.08 last year and is now rising. My last PSA in Oct was 0.665.

in reply to kjscobel

All right, now you brought up another issue. I've had about 8-9 guys stick their digit up me. I don't remember any of them having a conclusive decision. One says it's soft, and normal, another says it's hard and big. One doc had a digit that was about an inch across, and I think he enjoyed it. Seriously, a big finger.

jal1954 profile image
jal1954

Age 53 in 2007, detected by DRE with a normal PSA. Biopsy revealed Gleason 3+4. Radiation in 2008, then peace for a few years. Recurrence noticed in 2012 by small rise in PSA. Off to MD Anderson, now a 4+5. Salvage surgery in 2013, followed by AUS in 2014. Small PSA rise, much larger this year. Currently on Lupron, Honokiol, and Turkey Tail Mushroom extract. Re-evaluate in Feb; if worse, then either clinical trial or Provenge. Still in the fight.

Daddyishealing profile image
Daddyishealing in reply to jal1954

How long have you been using the turkey tail and do you feel it's helping?

jal1954 profile image
jal1954 in reply to Daddyishealing

Since early December. No way to know anything now. I'm going back in for a full battery of tests in Feb. Then we will have some idea.

deano58 profile image
deano58 in reply to jal1954

Have you got any ongoing issues from the salvage surgery? I was discouraged from having it done because I was advised the risks out-weighed the benefits.

jal1954 profile image
jal1954 in reply to deano58

Total incontinence. After nearly a year, another surgeon installed an AUS. Otherwise, while the prostatectomy was a difficult surgery, with a lengthy recovery, there were no other lasting side effects.

Daddyishealing profile image
Daddyishealing

My dad was dx at 64 with stage 4. a year ago a nodule was seen in lungs,so I don't know how long he's been living with it. I jut know for the past 2 years minimum I've been trying to get my family to believe me..I knew he was sick. I just never guessed this, but I saw his health decline at 61,62 but he also went through a huge business stress for the past 5 years which might have triggered the on switch .

BrianF505 profile image
BrianF505

I was diagnosed in Dec 2002 at the ripe old age of 44. No symptoms. But my girlfriend and future wife made the call. I'd had a PSA in April 02 which was 3.2. And a follow up PSA in Oct at 2.8 and my primary said I was fine. At that point Stacey and I had only been dating a couple months and when I reported the results, as well as what the doc said, she looked at me funny. But I didn't know what that meant. Now Stacey fancies herself to be a bit of a witch and she was also an RN working for the Urology Practice at Jefferson University Hospital in Philly. Seems when she got back to the office she began to quiz the docs about these numbers and a paternal uncle who died from PC. I was not aware of her inquiries until about a week before my vasectomy which I'd scheduled up at her office. She called me and said I was getting an early Christmas present when I came in. Huh? What I said... a prostate biopsy. So I went in, the doc and Stacey did the vasectomy together and then I flipped over for the fun part. Stacey, thankfully, excused herself for the biopsy. She reported the bad news about a week later. We'd only been going out about 6 months then, and I told her if she didn't want to deal with this, especially with her knowledge, I wouldn't hold it against her if she wanted to call our relationship quits. No hesitation on her part, just out came the words, no, I'm in. Figured I better keep her so we got married about 12 years ago.

Like many of you, I've been through the ringer- Open Radical, (cuz that was the gold standard back then), salvage radiation, then follow up radiation to the lymph nodes after having the Combidex scan. 3 rounds of triple hormone blockage- the most awful in my opinion, 1 round chemo, Provenge, also had the C11 Soduim Acetate scan in Phoenix which showed a pea sized bit of cancer on my urethra for which nothing can be done. Currently at 3 years of Xtandi with excellent results- PSA hovers between 0.03 and 0.06. Happy with that result, but the fatigue has left me unable to work and I'm currently on disability. But I'm still kicking and I've learned to manage my days so I can enjoy most them, my wife, family, friends, etc. I'm hoping my run with the Xtandi continues.

That's it for now.

Brian in New Mexico

AlanMeyer profile image
AlanMeyer

I was diagnosed in 2003 at age 57. I had gone to my Health Maintenance Organization (Kaiser Permanente) for a routine annual exam and blood test. When I went to the lab, a woman working there in a Muslim outfit and headscarf looked at the list of tests I was supposed to get and, entirely on her own, checked the box for a PSA test. I asked her why she did that and she said that at my age it should be done. I'm sure that she didn't have the authority to do that, but she saved my life nonetheless and I'm grateful to her. Later, I tried to find out who she was so I could thank her but no one in the lab remembered her. Maybe she was a temporary employee filling in for someone on vacation or out sick.

I was diagnosed at age 66, just a few months ago. My PSA was in the normal range at 2.7 and hadn't changed much from the previous year's reading of 2.9. It was the DRE that pointed the finger (couldn't resist) at the cancer which the biopsy confirmed. I've already dealt with BPH and TURP surgery 10 years ago. I recall my TURP surgeon kindly counseling me that I could still get prostate cancer. Yes I could and did.

cfrees1 profile image
cfrees1

I went in for a routine physical when I was 50, knowing that it was time for a colonoscopy and not having been to a doctor for about 8 years prior. I needed to set up a relationship with a doctor so off I went. Fortunately he ordered a PSA test along with other routine blood work. I was shocked when he called me with the PSA results (89.9). This was about a year ago. I had no symptoms and didn't even know what a PSA test was. Although the cancer had spread regionally already, I still consider myself lucky that he ordered that test.

in reply to cfrees1

How about that. I had a bout of Diverticulitis, they found my prostate enlarged during the colonoscopy. If it weren't for that, I wouldn't have had a clue. Probably be dead by now, I'm guessing.

Nutters85 profile image
Nutters85

I appreciate the info from everyone's posts. I was just DX at 49 this year in April. Had pain where I thought it was a pulled groin or something. PSA was 646. Have Mets in pelvis, ribcage, spine, skull, and left shoulder. Getting 6 month Lupron and taking daily Casodex. Also finished 6 rounds of chemo. Get Zometa infusions monthly to help bones. PSA is .21 as of last week. Was back to work in May. Pretty much pain free right now. Looking to get into a healthy diet that is going to help me lose weight for my bones' sake and help me with my fight.

Best wishes.

Nutters

You sure got a raw deal, Nutters. To be pain free, and able to work is fantastic. I was able to work up until about 4 years in. You're going to have to watch your diet now. I put 50 pounds on in short order from the Lupron. Along with all the other side effects. Now, seven years on I got used to the problems and feel pretty good.

Joe

Nutters85 profile image
Nutters85 in reply to

Thank you for your reply Joe. Yes there has been weight gain since DX.

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