Husband diagnosed Feb 2017, PSA 275, gleason 8, several enlarged lymph nodes in the iliac chain, obturator, and largest in the para-aortic measuring 3.3 cm. Bone scan was clear. Pelvic radiation in 2017. After 3 months of ADT (eligard) his psa dropped to .008. After 18 months of ADT, his RO took him off ADT, saying that this is SOC. His psa remained at .008 until his test on Mar 2020
Mar 4 PSA .023 April 8 PSA .031 June 18 PSA .043
He had a phone appointment a couple days ago with the radiation Oncologist. He said the rise is due to his prostate and that the PSA will continue to rise slowly over 10 years and not amount to anything. He said to come back in a year and that it isn't necessary to monitor PSA. Does this sound like good advice? I had very good advice from the members here about not getting PSA crazy, and we agree with that. But should we continue to monitor PSA? And if so, how often?We will have to pay for tests, but that is ok. So confused!! Thanks so much for your help!
Catherine
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cajeffrey
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On the one hand it seems great that your RO is confident. That’s good news. I’m no expert . I get PSA and blood work tri monthly for five years now . Don’t think the PSA test is very expensive. You can get your own monthly if you feel better . Try monthly is the norm. Best wishes with this. Scott 🌵
I think your RO is crazy. Find a very good MO and get his/her opinion.
Thanks for your response Fran. I agree with you that finding a good MO is a good idea. We will probably do a few more PSA tests before initiating the search.
Hi Catherine. I just re-read your post . Personally I’d test often... if it’s rapidly rising it will induce stress but at least you’ll know and not be guessing... Good luck , stay strong yourself in these trying times.
Thanks for your reply. I prefer more testing...as you say, so that there is no guessing. I think my husband wants to listen to the doctor because its such "good news". I'll talk him into doing more
I wouldn't see the need to do monthly PSA, but I would certainly (for myself) want to see it at least two times a year, and probably four. It does not mean you need to act on it.
This should not alarm you, but clear scans do NOT mean that micro-metastases do not exist. They probably do, and the reason it should not alarm you is that they exist in MOST men even with lower initial PSA and Gleason numbers, BUT micro-metastases do not necessarily mean that clinically significant "metastatic cancer" will ever develop.
What they mean is that prostate cancer is essentially a systemic disease even when "localized." These cancer cells often like to migrate to the bone fairly early in the course of the disease, even if they never cause a problem once they are there. But that does not mean they need to be treated in all cases. The trouble is, it is hard to predict in which men these micro-metastases will grow into full-blown metastatic disease that threatens life.
I would suggest you find an MO, rather than an RO, to monitor potential progression based on future PSA numbers. Nothing against your RO, but what is his incentive to inform you earlier rather than later that his treatment could in any way be considered to have "failed" as curative?
The RO cannot definitively say in advance what the PSA is going to do in coming years, or that the rise will be exclusively due to the prostate itself rather than to prostate cancer cells. He can say it MIGHT not amount to anything. If he says he knows it WILL not, then he is over-confident (and should be fired).
But also be aware than an MO may say "Lupron for life" is the only way to go, and that may not be true, either. So keep educating yourself and keep considering second (or third or fourth) opinions.
Thanks for this informative response. I agree that his advice to us seemed over confident. He had initially said there is no cure, now he is saying the rising PSA will amount to nothing. My feeling is to check PSA at least every three months to see. If there is significant rise in PSA, find an MO. It seems every man's PC progresses in its own way, so all one can do is pay attention to any changes.
I guess another thing to consider is that "standard of care" varies from country to country. Perhaps in Canada the suggestions of your RO are more in the norm. In the US, since more frequent PSA tests are usually covered, docs and patients have no disincentive to getting them frequently.
It is true, too, that there is a very good case for not looking at PSA numbers TOO often, since that can cause as much (or more) worry as NOT knowing what the supposed trends are.
If there is no plan of action for when PSA rise hits a certain threshold, then why worry yourself? But perhaps that is a reason to consult an MO, and ask for thoughts on how much of a rise over what period of time will trigger an action, and what are the options for that action.
PS - I gather you got the gist of my first response in spite of the typo, now corrected to say "clear scans do NOT mean that micro-metastases do not exist" but only mean clinically significant metastases can't be seen.
Yes I understood the comment about clear scans, thank you. I realize too many tesst can cause more worry, but no one can't predict what this cancer can do, so my feeling is why not pay for three or four tests a year to have an understanding of when to consult an Mo.
It seems the feeling of most members here is to continue the testing, at least three or four times a year, so that is what we will do. Thanks again for your reply. All the best to you.
Three rises although very small could still indicate some activity and call for some action. I would continue to test monthly. It might be time for a new ADT drug.
Congratulations on the great response. Your RO gave you great advice. Keep in mind that most men on this site, unlike your husband, have incurable PC. PSA may get as high as 2.0 without signaling that further investigation is necessary. PSA will rise due to benign causes as his testosterone comes back, and that is fine.
Thanks for your reply. The RO's advice is confusing. He told us, at diagnosis, that there is no cure for my husband's PC. He said the only thing he can do is "make sure he dies from something else" . So is he saying that the cancer would be so slow growing that it won't be an issue for my husband?
I don't know what he is saying. What I am sayingis that is all his pelvic lymph nodes, including the para-aortics, were irradiated, then it is possible that he was cured. All you can do is monitor PSA, and if it exceeds 2.0, then further intervention is necessary. Until then, no further intervention is necessary. If all his pelvic LNs were not treated, his cancer can still be held in check.
The level of PSA considered to be a biochemical recurrence is different for prostatectomy vs prostate radiation. If your husband had radiation the PSA level for biochemical recurrence is 2ng/mL above the nadir (or lowest point reached by the PSA).For prostatectomy, a recurrence is considered a PSA of 0.2 or higher. (ajmc.com/journals/supplemen...
Did the pelvic radiation encompass all of the lymph nodes involved, including the para-aortic node? It is possible that the current rising PSA reflects residual prostate tissue, but I think it is a good idea to keep an eye on it since he is high risk for cancer recurrance. Although doubling time is not considered very accurate with such low PSA numbers, it is about 4 months. Testing every 3 or 4 months seems reasonable to me.
Thanks for your informative reply. I will have a look at the journal. As far as we know, the para-aortic was radiated. Knowing the difference between prostatectomy and radiation is so relevant!
If I can ask another question regarding his lymph nodes, it would help with some confusion I have. When his PSA was .008, an MRI showed that his lymph nodes had "very slightly reduced in size". Would they be enlarged because of scar tissue? Or do the cells continue to die post radiation.
I think we will try checking PSA every three or four months.
Hi- Radiation can take time to kill prostate cancer. When was the MRI relative to the last dose of radiation and the ADT? With a PSA drop from 275 to .008 I would not be concerned about active cancer in those nodes at the time of the MRI.
Last radiation Sept 2017, MRI was April 2018, so only seven months after. ADT finished May 2019. So he is unlikely to have any active cancer in those nodes at this point. I won't be concerned until there is a rise of 2 ng above the nadir. Thanks so much!
Thanks for your reply. I like the idea of doing monthly tests and I'll see if my husband is up for the costs. I think here in Canada it is only $35.00. Its not covered if not prescribed.
There is no harm in testing say every 3 months and doing so provides a wealth of data. The key to PSA marker is change over time. You want that data.... No matter where this path leads you, historical data will be your friend.
Thanks for your reply. I am completely in agreement with you that historical data is your friend. Sometimes I wonder if I am overreacting, but reading this forum has given me confidence to do what we think best regardless of the RO's recommendation. So every three months it is going to be. All the best to you!
Better to be on top of it , instead of being naive. Which you’re not.
Rejoice! At 72, after primary treatment three years later, your husband is undetectable; i.e., <0.1. Enjoy life. Stop worrying. I would venture to guess that by having an ultra PSA test, needless worry takes place.
However, with a Gleason 8, I would monitor PSA and T quarterly for peace of mind. Besides It will enable one to catch a rapid PSA rise early. But, anything less than 0.1, regardless of rise or fluctuations, is of no concern.
Micro-metastasis can happen quickly. Unseen minute cancer cells traveling the vascular and lymphatic systems are the major reason of failure of primary treatment. But you are not there yet. Most likely the reason your RO is confident.
I am not a physician, but, after my primary treatment in 2003, I was able to catch a very rapid PSA over a four month period resulting in metastasis to L2 and T3 of my spine in 2004. I had monthly PSA tests, because my PSA never really came down from initial diagnosis of 6.8 and a Gleason 7(4+3). Personally, I would not be comfortable with annual PSA test. I have been undetectable since 2005 and my comfort level is quarterly PSA and T tests.
I guess I follow the Ronald Reagan policy of “Trust, but verify.”
Good luck. Take time to count your Blessings and relax....... and, trust, but verify.
Maley I was most fortunate to be referred to a world class researcher and underwent a six month chemotherapy trial plus hormone therapy with Adrimyacin and Taxotere; plus orals - Erustamine and Ketoconozole and Prednisone.
Thank you so much for your very comforting post. I love that policy "Trust, but verify". Sometimes its difficult to relax, but I think now is the time to embrace our good news and enjoy summer. I think we will settle on the quarterly PSA and T tests . All the best to you!
Congratulations on the continuing good news, Star Kalan, oops, I mean Nalakrats, Thank you for the helpful advice you share with us boys and girls, (and boys who these doctors are turning into girls)!
I am in Canada too ... British Columbia. I have had my PSA tested every month since diagnosis two years ago ... age 55, Gleason 9, a few distant bone mets.
After chemo, my PSA reached a nadir of 0.17. It stayed around that level for several months. Then, like your husband, it started to creep up each month. I was worried that I was becoming castrate resistant. My oncologist said not to be concerned until it was over 1.0 or started to rise rapidly. My PSA eventually leveled off at around 0.4 and has been there for the last 5 months. My scans in April showed no additional growth in the cancer since last year.
It looks to me like your husband is doing really well. Best of luck.
Thanks for your reply. Were you prescribed monthly tests? Here in Ontario it seems that we have to beg to get PSA or T tests. But we are prepared to pay regardless. Tall Allan said that when one has had radiation but no prostatectomy, 2.0 is the number to watch for.
We are going to settle on quarterly testing. All the best to you!
Yes, I have a standing order from my oncologist to go for a PSA test each month. I have an appointment to see her every four months and, prior to each appointment, there is a more thorough blood test. There will be a full set of scans done once a year unless there is a dramatic rise in my PSA, in which case, she will order those right away. She did say that she wanted to keep a close watch on my cancer because of my age (now 57) and the aggressiveness of the cancer (Gleason 9).
So far, so good. I am still castrate sensitive so only on ADT injections. My latest scans in April show no progression. I'm really happy with the care I am getting from the BC Cancer Agency. I have complete confidence in my medical team.
Please keep us informed of your husband's progress.
My oncologist said there are no absolutes with PSA numbers since each man's PSA and cancer is different. In my case, she said not to worry if my PSA bounces around, as long as it stays under 1.0 or starts rising dramatically.
You are getting excellent care in BC! I've heard that BC is quite progressive in their health caer. What kind of scans will they be doing? Are the PSMA scans available in BC? In the three and a half years since diagnosis, the RO hasn't ordered any scans, except for the original CT to show where to radiate. When an MRI to diagnose back pain showed a small lesion on the pelvis, the RO said to ignore it, that it was probably nothing. I think he just follows SOC and no more.
I had a bone scan and a CT scan in April. There is a PET scanner for doctors to use here but, in my case, there is no need to use it. The other scans monitor my current mets. A more detailed scan may pick up additional tiny ones but my treatment wouldn't change so there is no point in going to that expense.
I am not a doctor or scientist but I'm surprised that your husband hasn't had any additional scans in over 3 years. PSA can be good to monitor cancer but it isn't always accurate. Only scans will show what is really happening inside. My MOs current plan is to monitor with monthly PSA and confirm with annual scans.
Has he seen an MO in addition to the RO? He may get better care there. I consulted with both initially and, since we decided not to do radiation yet, have only seen my MO since then. She has been my primary doctor for my cancer treatment so far.
Looking forward to the pic. It will be an inspiration to get hubby into the gym. (when they open, or at least get him doing weights in the basement.) I'm getting tired of being the only one to crank the winch on our sailboat!
It would be a BIG help to those of us reading these threads to make them less cryptic...BCR? I found what I needed for BCR at this article cited by Shanti (ajmc.com/journals/supplemen...
Thanks for your reply. Everyone on the forum seems to agree that every three months is important. Here in Canada, we don't get the same kind of care as you folks in the states. All the best to you!
That sounds like a terrible idea. I would check monthly or at least every 3 months. He could have lymph node invasion as I do. Err on the side of caution. Always. Good luck.
Thanks for your reply. We have decided that every 3 months is the best idea. Waiting a year is too scary. On diagnosis he had several enlarged lymph nodes which were radiated. I agree that caution is important.
Thank you for taking the time to write this informative post. I will check out these sites you have mentioned and I will read through the posts and comments. Congratulations on your current good health and well being. All the best to you!
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