My son had a PSA of 20 just 3 mo after RRP last October 24th. Prior to that we had no idea from his test results that the PC was outside of the prostate. It had gone to his pelvic lymph nodes plus he’s tertiary five. He’s been on generic Zytiga and prednisone and Lupron and finished six weeks of IMRT. Three months after the IMRT his PSA dropped to .07 and now it’s .01. We all live from test to test and I just hope and pray the good news keeps coming. He’s only 50 years old and he’ll be 51 in August. This really brightened my day which we all can use. I realize that it’s test to test, but this does give me hope.I am hoping that the IMRT got all of it because it was regional but he told me he’s actually stage 4 so I don’t want to be overly hopeful.and he still taking all that ADT.But I feel very grateful that the test results were this low and did not go up.
Some hopeful test news:🙏🏻 - Advanced Prostate...
Some hopeful test news:🙏🏻
Your son's latest PSA result is even better than what you wrote. It is <0.01. That means the lowest their lab equipment can read is .01 and your son's PSA is less then .01. The symbol preceeding the numbers, "<" means less than. So that's all we know....your son's PSA is somewhere under 0.01. That's as good as it gets. Wishing you guys all the very best going forward.
Thank you so much for explaining that to me. I just read it as .01 and was happy with that but your explanation makes it even better! Thanks again!
I am happy and sad for you.
Happy because your PCa is in remission,
Sad because I was like you but my urologist recommended NO RP but VMAT-RT 3Gy X 20fx and ADT (Casodex 50mg X 30days & Lupron Depot 22.5mg/12weeks X 2for 6 months) in 2020.
Last PSA on July 7th 2023 = <0.01 μg/L .
No catheter, No incontinence and No major surgery. And you still end up having the same treatment that I got.
Urologist make their money with prostatectomy.
The initial biopsy results were 3+3 and 3+4. My son went to several specialists , and they all recommended an RRP. We thought it was going to be contained and hopefully a once and done. When my son went for his first PSA check up two months later the PSA was 20! We also found out that he was tertiary five. So it has escaped the capsule to some pelvic lymph nodes …his specialist put him on a ADT right away and then 6 weeks of IMRT. Three months later, the PSA had dropped to .07 and the six month check up was the less than .01. My take on this is if the PSMA pet scan had been done before the surgery, we would have known this, but they don’t do them routinely. I have met others who have been bitten by the same thing. Even though these test results were less than .01 he will still be looking at several years of ADT because the cancer is aggressive and he is young. My hopes are that the IMRT got it all because it was regional, but also it could be just the tip of the iceberg. He is technically a Stage 4. But for now I am breathing a sigh of relief because the numbers could have gone up instead of down, but there are no sure things in this horrible disease.
It sounds like you had great treatment, but since my son is so young all the specialists including one from the Mayo recommended RRP. At the time there was no indication that it had spread beyond the prostate. But not having to have surgery is wonderful if it can be done.From what my son has said, he has had minimal side effects and the ADT.🤞
The ADT should work systemic, Injected subcutaneous, intermuscular or intra-veinous, they all send the medications in the whole body.
What was the % of each Gleason score.
My g4 was 85% and my g3 was 15%.
Comparing two different cases is a useless academic exercise, as is judging past treatments. Every case is unique. Even with the same "numbers", each patient's body is different. There are so many variables (age of diagnosis being the most important) involved that every patient needs to think for himself based on all the data and professional (oncology) opinions they collect. Input from other patients about their experience can be useful, but don't be fooled into thinking any woulda/shoulda/coulda stuff is relevant in any way.
He is remarkably undetectable on Zytiga, the wonder drug. I hope he joins my trend, Dx at age 57 with PSA of 71.5, Stage 4, PC spread to my bones in at least 4 spots maybe 6. Currently undetectable on Zytiga for 9 years since I started on it in August 2014.
Wings aka Dan in So Cal
dkasper333@yahoo.com
It does seem in general that if the PSA gets down to <0.1, the outcome is good. Did you have surgery or radio, BTW.
Dont mind me. I am just a layman.v🙂
My husband has never been below .8 and it took 6 years of SLOW but conisitent dropping from >677 to get here. He's doing great at the moment Spread to bones Gleason 9. A fast PSA drop isn't always an indicator of success. Treatment details in my bio. Just another perspective as every case is so different.
You are so right about the fast drop in PSA not always being an indicator of success. I have read that too. I guess I’m just feeling happy that it didn’t go up instead of down. But with the tertiary 5 he’s going to be on ADT I’m sure for several years. The PSMA, pet scan, didn’t show any spread to the bones so that was hopeful. But it’s a sneaky disease and I don’t know what’s lurking around the corner none of us do. I am just so delighted to hear that your husband is doing so well. Six years later with stage four he must have excellent doctors. What medicines is he on after 6 years?
He had RRP and 2 months later a PSA of 20 was shocking. Leaned he was tertiary 5 and there was some spread to pelvic lymph nodes. Put on ADT followed by 6 weeks of IMRT.
The term 'tertiary 5' is newer staging so I'm not sure what my husband would be- probably that. A dropping PSA is ALWAYS good news!
I believe in tertiary 5 they feel that there’s a greater risk of BCR so more than average aggressive. It’s more serious than a 4 more like a 5. It’s not a great finding for the patient and it was in the pelvic nodes already so they have treated it aggressively. As far as we know, there’s no spread further than the pelvic nodes. They didn’t find any meds anywhere else but one can’t be 100% sure.
Just read up on it- looks like they use tertiary mostly after RP which mine didn't have. My husband's diagnosis was found during a TURP- they didn't know he had cancer prior to TURP- so the diagnostic measures weren't as thorough in some ways. He hadn't ever had a PSA either until over a month after TURP. Bad urologist!
Yes the tertiary 5 was found after the surgery also the pelvic lymph situation. I wish they could have done a PSA may pass before surgery because that would have shown the pelvic lymph nodes earlier but they are not using the Pet as a diagnostic tool right now. I hope in the future they will for others.
Sounds like a bad PCP too -- was he not screened (DRE and PSA) during annual physicals? Men don't generally go to a urologist unless exhibiting symptoms, which is late in the game. I had TURP for BPH 10 years prior to my prostate cancer diagnosis. Before and after the TURP I was screened annually starting in my 40's and it was caught early via a suspicious DRE that got me sent to a urologist at age 66.
Correct. Bad PCP as well. Over a year of symptoms and a father with PCa. He was told he was too young for cancer. Crazy.
just drugs, Casodex breifly, lurpron first 5 1/2 years, and Ztyiga for nearly 9 years nowor four years, and Zytiga
Congratulations! 9 years is a long time!
Thank you for your good wishes. I hope he has your good luck too. what I’m really hoping is that the IMRT got all of the cancer in the lymph nodes. The PSMA pet scan showed no spread to the bones at least a few months ago. I don’t know if they checked for that yesterday or not. Probably not because the PSA was so low. Just hoping that the original cancer is gone for good but one never knows if there’s more hiding someplace else. I’m so happy that you’ve done so well …that’s wonderful!🙏🏻👏👏👏
Your track record of 9 years is remarkable. Keep it going. It’s so wonderful!It’s what we all hope for!
👍👍👍
So happy for your good news! My husband was 49 at diagnosis of stage 4 to bones. He's doing really well at the moment- almost 6 years after diagnosis. Lots of great treatments new in the last 6 years- many to try for those just being diagnosed. Here's hoping your son continues to do well!💙
Thank you so much. I’m so happy to hear that six years later with stage four that your husband is doing so well! Doing well is music to our ears! I just read your husband’s bio history and he has been through a great deal of treatment, but it’s brought success and that’s what counts!
My husband was diagnosed right after a couple of studies that showed doing either chemo or zytiga with ADT right at diagnosis was best. So we did chemo plus ADT from start because he was young and otherwise healthy. The current standard if care for those diagnosed metastatic is Triplet therapy. We would have done that if it was around 6 yrs ago! My husband had chemo and ADT- then zytiga and ADT which he's been on for 5 years. Plus one dose spot radiation. So not many treatments for 6 years compared to others. We feel very fortunate 💙
My son hasn’t had chemo yet because it’s been regional in the pelvic lymph nodes and his doctor said she won’t do it unless there’s evidence of meta static spread further.
Good news for your son and yourself as well. Good for both of you. 👏👏👏
❤️❤️❤️
I am 79 yrs old . Feb.2020 I was diagnosed with stage 4 prostrate cancer , got on Lupron injection every 3 month. The first month I was prescribed Casodex 50 . I started out with PSA at 1850 . After the first month of Lupron and Casodex my PSA was around 9. Continued with Lupron until August 2022.My PSA was at 0.45.Doc was pushing other pills which I refused. Have not seen him since and I do not know what my PSA is. Will see my pissed of Doc. Sept. 2023 to get PET Scan and PSA blood workdone. Will be interesting !!!!!
You really responded well to the medication for the PSA to drop so much. I hope that at your next visit the good fortune continues. Keep us all posted.🙏🏻
Best wishes for continued good news on your son's recovery. He is fortunate to have the support of his family.
Thanks since I am a mother not a wife or SO I try to be supportive but not overly helpful…basically I try not to be a PITN! I have noticed some irritability on his part of late, and I think it might be a reaction to the ADT but I dare not mention it! He also has a new job.So I guess the best thing for me to do is to just stay out of the way.
I just read your bio and it’s actually quite similar to the way my son is starting out… you’ve been through a lot. These meds work miracles but they also have really bad side effects. My son is looking at those big massage chairs at Costco and he says it has nothing to do with his meds that he just wants it to relax after work but I’m not sure that the meds aren’t bothering his bones. (Lupron, generic Zytiga and prednisone) +6 weeks of IMRT.He’s been on meds since last December 2022. Do you think these meds could be making his bones and muscles sore? He’s never asked for anything like a massage chair before and didn’t even like recliners so it seems like an odd request. I went onto Costco and looked at them, but they get terrible reviews not lasting long and getting them fixed poor customer service so I’m not sure that’s a good solution. Plus they are not an inexpensive investment.
Even when the latest news about our own illness is good, I think we can sometimes be irritated just from having to be constantly reminded about our illness. I know there have been times when I did want to talk about it, and other times when I did not. And if he is in pain, that could definitely make him irritable. As for potential sources of the pain, bone-joint-muscle pain is a known side effect of both zytiga and lupron. I believe they affected me that way, although it is hard to pin down the actual cause of such pain without stopping the drug. If he does have a lot of new pain since starting the drugs, he should definitely report that to his doctor. I am not sure how much a massage chair would help (although I do love to purchase a 10minute sit at the mall).
I think he should talk to his doctors too first and then if he decides to buy a chair get one with good reviews and good customer service. Otherwise the chairs with poor reviews are like throwing money away. He says they are much better than the mall chairs but I still question any therapeutic value but it’s up to him! I have bowed out of the subject after suggesting talking to his doctors first.
Sad to hear that. Too many men are like that.
Sadly so..somehow women go to doctors much more than men. Guess it’s part of our nature!
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