Hi All,
Looking to connect with people with metastatic PC that produces no or low PSA I am 44 and was diagnosed with PC with a bone metastasis grade 4+5. My PSA at time of diagnosis was 0.54. I’m undergoing PEACE 1 protocol treatment. Finish RT and Doxetaxel still on Zytiga.
I would love to connect with people in the same or similar situations.
You were lucky to detect it.
Yes, the Urologist said it too. I guess the main thing was not ignoring symptoms although subtle at the time.
You are lucky this was discovered. I was diagnosed age 45, due to an increasing PSA. Best of luck to you.
Sorry to hear of your diagnosis how is your treatment going?. Ye sure I was lucky. just wouldn’t ignore the symptoms. I have three young kids. If I didn’t have kids I probably would have walked the symptoms off.
May I ask how your PCa was detected, given your young age and low PSA? Hoping you get all the support and answers you need here, it's a great forum.
I had a little blood in my semen and urination flow a bit slow. After a PSA test at 0.54 the Urologist said to comeback in a year but I persisted to find the issue and new Urologist. Not long before I got a planned prostate MRI, I started to feel bad lower abdomen pain and radiating to my left testicle. We found the PCa after the prostate MRI and subsequent biopsies
So glad you were persistent.
me too 😊
My husband was diagnosed in January 2018 at age 52 with Gleason 4+5 high grade adenocarcinoma with a psa of 1.28. He has gone through many treatments but also has had periods of being off all treatments. Throughout it all, he continues to work full time, travel, and enjoy life.
He assembled a good team from Centers of Excellence early on, and got second opinions. He stays active and eats a balanced diet, but definitely still enjoys everything in moderation.
Feel free to pm me with any questions about our experiences. I’m glad you caught yours when you did. Best of luck!
Sorry to hear of your husband’s diagnosis. I will PM you for sure. It’s reassuring to chat and hear of experiences. Thank you.
My RO did PSMA scan with PSA< 0.02 since 2 years. He says 5% cases may have metastasis even with non detectable PSA...so why to take chance
In Dr. Kwon's video last week with the Prostate Cancer Research Institute, he said that more than 10% of his patients are metastatic and have no detectable PSA. Actually, he has said 10% in the past and that the percentage is increasing.
That said, it is likely that many patients end up with Dr. Kwon because of their unique situation of having mets and no detectable PSA. So, his numbers may be higher than the general population.
I am in that situation. When diagnosed as metastatic, my PSA was below 2. That was two years ago. It has since then always been undetectable. But I still have bone mets.
I have connected with others in the same situation through Facebook.
Thanks for sharing the information on Dr Kwori. I’ll check out the videos. Sorry to hear of your diagnosis. I hope all is going well. What treatments did you get?
Initially, two rounds of chemo, but I had severe reactions so it was stopped. That is when we sought out Dr. Kwon. Continue ADT and I have had spots radiated when they show up.
Sorry to hear you had a bad reaction. Chemo was brutal. I feel nauseous even thinking about it.
My PSA wasn't very high either, found the cancer another way. OTOH, you'll find plenty of men with a very high PSA.
mine was low but not as low as yours. It was 2.9 at the time of diagnosis with Gleason 8. Came back 4 years after surgery. Got radiation and antitestosterone drugs. Currently waiting to see if it returns.
How do all these men know if the cancer is not spreading with out being scanned constantly if one can not go by PSA readings? Hard to be able to get any scan where we live. ? So how do we really know?
I get a PSMA or Choline 11 scan every 3 months. Based on my history, I don't expect we would ever know otherwise.
For me, I have found that alkaline phosphate (ALP) Is a very good indicator for me that cancer is back and growing.
Sadly, I could not convince my MO of that. MO reasoning that it was not an indicator was because it was still in the “normal range“. I think if we had taken my ALP rise into consideration and gotten some scans earlier than we did, I’d be less closer to death than I am now.
Sound familiar in this context? If your PSA is in the normal range, there’s nothing to look at…unless you’re one of us whose PSA doesn’t rise much with cancer growth.
May I ask what your ALP is ? My husband is still doing chemo with triple therapy and ALP after chemo round # 3 was 76.
AlkaLine Phosphatase
It’s an enzyme that comes from mostly the liver and bones. High readings on a blood test could indicate damage in liver or bones.
Prostate cancer loves to get into your bones and chew them up, so ALP is a helpful check.
You said your husband was 79 on his last test, that’s a great level for it to be. The normal range is usually 47-147 or 38-126 depending on lab,
My ALP has always been 38-60, for years. In August 22 when they found the cancer, it up to 93. I had multiple bone mets at that point. Until I got started with chemo in January 23, ALP continued to rise up 183!
After my first chemo session, it was back down 60, and then dropped to 50’s. After final chemo in May, it was 43.
Two months later, it was up to 73 in July. Then 102 in August, 139 in October, 148 in November, and on February 8, 2024 it was 168.
Five days later I was in Emergency Room for headaches and vision problems. The ER team did CAT scans and MRIs and discovered a massive prostate tumor metastasis in my skull, the temporalis muscle, and massive growth in into the, brain space, causing the brain to be displaced a huge amount.
Craniotomy immediately.
All of that with a PSA of 0.490. That was up from 0.013 at end of chemo, and just like ALP started rising in July, so did PSA. It was doubling every month, but since the numbers were still so low, no one but me was concerned and no one, but me was willing to look at the relationship between ALP and PSA.
ALP test my.clevelandclinic.org/heal...
Jumpingbellybeans Also, I failed to mention in above that even with those very low PSA numbers, not only did I have large tumors skull but so much more.
After the surgery, I got a proper PSMA PET (my first PSMA, my three previous were Axium 🤬).
They found tumors almost everywhere, big painful one in my clavicle, the sternum, a few of thoracic vertebrae, every vertebrae in my lumbar spine, L5 mostly infiltrated, the sacrum, the prostate again infiltrated with multiple foci in all the lobes, my liver has multiple mets in it, the right posterior medial iliac bone, and the right ischial tuberosity as well. And bilateral pleural effusions just for fun.
My post here about the brain adventure if interested in more on the low PSA monster. healthunlocked.com/advanced...
Wow! Thanks for the info , that's a lot for you to have to process. So it sounds like after your chemo it did not last long and it started spreading ? Really hope you are doing better now and some sort of treatment is working ?
I read through your story on the link. You been through it! But you are doing great brother 👊🏻. By read your story I see how important it is to challenge our MOs. I guess it’s a smaller percentage of us with low PSA PC.a. So less studies and MOs with less experience with it. TBH that’s why I’m here. I want to learn and challenge my MO all the way.
I will discuss this was to monitor with my MO. Thanks for sharing.
I think you meant this message for me, but anyways ALP is part of a comprehensive metabolic panel, so you’ll probably get it every time you get blood tests.
ALP is only going to be diagnostic for prostate cancer metastasis, if your bones are getting hit. Maybe your liver as well. It’s not going to tell you anything if you’re getting lymph nodes or other organs involved.
But if it starts going up and keeps going up even if it’s still within range, what is “normal“ it’s still worth talking to the doc.
I’m pretty sure if my docs had listened to me back in September about mine, I would’ve been getting my skull cut open and now going through radiation for multiple bone parts. So much pain because they dismissed me out of hand.
😂 yes it was for you. I must have it the wrong reply. Sorry to hear what you are going through. I had one bone met in the pelvic bone. After radiation, chemo and ADT (current) the latest MRI shows only subtle showing on the bone. They said it may be scaring. Recent bone scan also shows no new mets. But I’m press my MO on how to monitor the cancer. My PSA is at 0.04 down from 0.54, he said we can monitor at the lower levels and consider any increase from 0.04 as a sign to do further evaluation but I would not like to rely upon that. I will bring up the ALK with them too. Did you get a Caris or other dna profile of your biopsy?
ALP*
Sure. I’m currently at 61. I finished Chemo on December 7th 2023. I was over 90 at round 3 of 6. Still on ADT and Zometa injections every 3 months.
Mine PSA was 5 with Gleason 5+4. Surgery with PSA 0.0 postop. 6months later, 0.2. PSMA showed 2 hot spots prostate bed and 2 pelvic lymph nodes. Had EBRT and ADT. None of my docs want to do anything unless PSA goes up again. Wish I had adjuvant radiotherapy instead of salvage. PSA after almost 2 years < 0.04. Stopping ADT soon and no more anything unless PSA rises.
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