PSA Rising after 5 years : My PSA has... - Advanced Prostate...

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PSA Rising after 5 years

Islandboy2021 profile image
41 Replies

My PSA has started to rise after 5 years. It’s at 1.24 ug/L. The last PSA three months ago was 0.27 ug/L. I have been on continuous ADT mono therapy since diagnosis, except for a short ill advised break in 2020.

I was originally treated with ADT upfront followed by 6 rounds of Docetaxel and radiation to the prostate. I believe this treatment was based on the Charted and Stampede trials.

My testosterone is still 0.1 nmol/L. This means I am still castrate sensitive.

I guess my question is what should I add to my treatment plan to get the PSA under control.

Recent scans show original metastatic disease stable with no new sites. I am not eligible for the PET scan until my PSA is at 2.0 ug/L.

I was concerned with micro metastasis. I would like to know what is the reason for the rise in PSA.

Thanks

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Islandboy2021
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41 Replies
Tall_Allen profile image
Tall_Allen

Castration-resistance means that PSA keeps rising in spite of castration levels of testosterone.

A second-level hormone therapy is a good next step.

Islandboy2021 profile image
Islandboy2021 in reply toTall_Allen

Thanks for the reply. I believe the oncologist was waiting for the PSA to rise to 2.0 ug/L before adding the second ADT. It’s probably the SOC here in Canada. Need to be at a certain stage before adding any more drugs. Is there a preferred drug to use for my situation. I have more than 6 bone Mets.

Tall_Allen profile image
Tall_Allen in reply toIslandboy2021

2.0 is the usual - sometimes earlier if rapid doubling time or pain. Zytiga and Xtandi are approved for metastatic CRPC no comparative trials have been done. Take any.

Fightinghard profile image
Fightinghard

Ask your MO to prescribe a 2nd level hormone treatment such as Xtandi to add to your current androgen blocker. Minor side effects. Should get you back where you want to be for a few more years.

London441 profile image
London441 in reply toFightinghard

Minor side effects? I’m very encouraged by that if I should need it down the line, but it’s the first I’ve ever heard that Xtandi side effects are minor.

Do you consider yourself lucky or is there another reason in your estimation?

Or I could be hearing only from those who suffer. Always a possibility.

Seasid profile image
Seasid in reply toLondon441

I don't know but I believe that all the side effects are very dependent on the person, same as the side effects of chemotherapy. I had peripheral neuropathy but that was it. Others didn't have peripheral neuropathy at all.

We can try Xtandi and hope for the best. Otherwise you can later half the dose if you can't take the full dose.

GP24 profile image
GP24

You could ask Dr. Palma to radiate your mets:

oicr.on.ca/researchers/davi...

Seasid profile image
Seasid in reply toGP24

He has more than 6 bone mets.

GP24 profile image
GP24 in reply toSeasid

Dr. Palma has the COMET-10 study. This radiates patients up to 10 mets. He mentioned once, he would be ready to radiate even more.

dhccpa profile image
dhccpa in reply toGP24

Does any RO in USA radiate with 6-10 bone Mets? Thanks

Seasid profile image
Seasid in reply todhccpa

I most probably would not participate in this experiment. I have even more than 10 mets

It depends where the mets are located.

I believe that the location of the mets is very important. I believe it would require a desission for each case.

Even with a much less number of mets the radiation oncologist would need to make a decision for the specific case.

dhccpa profile image
dhccpa in reply toSeasid

Yes, I would evaluate with much caution.

GP24 profile image
GP24 in reply todhccpa

Dr. Iyengar may radiate that:

utswmed.org/doctors/puneeth...

dhccpa profile image
dhccpa in reply toGP24

Thanks I'll check it out.

tango65 profile image
tango65

If the PSA is increasing with castration levels of testosterone (less than 50) the cancer is castration resistant. In some countries they require to have at least a PSA of 2 to declare the cancer castration resistant.

In general new therapies are starting when there is evidence of radiographic progression of the cancer. The cancer should be staged, preferible with a PSMA PET/CT and if there is evidence of progression, then they could start one of the new anti androgens or if there are few mets 4 or less they could do direct treatment of the mets with SBRT and see what happens.

ncbi.nlm.nih.gov/pmc/articl...

Seasid profile image
Seasid

Can you ask for an MRI scan of your prostate in order to see if there is any current inflammation?

If there is an inflammation present than try to control it. The PSA may drop without Enzalutamide.

Maybe antibiotics are a good possible choice as they have a strong antinflamatory effects. I am not a doctor but facing the same situation like you.

Islandboy2021 profile image
Islandboy2021 in reply toSeasid

I had my prostate radiated as part of the initial treatment. They did 20 targeted cycles directly to the prostate. I originally had an enlarged prostate and had trouble urinating and after the radiation I was able to pee like a racehorse and was able to stop taking Flowmax. The enlarged prostate was the reason I found out I had cancer. I had pain in the area and trouble urinating so my family doctor gave me antibiotics for BHP and when that didn’t work I had a Urologist confirm the prostate cancer with PSA of 105 and multiple bone Mets.

Seasid profile image
Seasid in reply toIslandboy2021

How did you decide to radiate your prostate? I was under impression that that is not needed for me. I am glad that the prostate radiation helped you.

Seasid profile image
Seasid in reply toIslandboy2021

Inflammation of the prostate could cause PSA elevation unrelated to the cancer.

MRI could clerify if your prostate is inflammed.

My point is that their is a possibility that your PSA is rising as a result of inflammation of the prostate and not as a result of the prostate cancer grow.

That is my personal interpretation. I am not a doctor.

Certainly the PSMA PET scan would be the best way to find out what is going on. But they are not ordering it before a PSA get to 2?

I myself would not rush with the PSMA PET scan as you are getting around 13 mSv (Sievert) radiation with it.

MarkBC profile image
MarkBC

Islandboy2021. Perhaps you live on Vancouver Island? That is where I live.

I've been on a similar treatment plan (Docetaxel and ADT) for four years. My oncologist added bicalutamide last year when my PSA reached 1.0. This knocked my PSA down to 0.17 for a number of months. My monthly PSA has been rising very slowly over the last nine months. It reached 0.77 last month. She has stopped the bicalutamide and told me that, as soon as my PSA rises any more, she will be adding abiraterone, very likely this autumn.

My lastest annual scans were in May and, like yours, showed no new growth. My oncologist doesn't think additional scans are necessary right now since I don't have any tumour pain that needs to be targeted. The rising PSA is an indication that resistance is starting to develop so we need to address that. There is no point in subjecting the body to any unnecessary scans right now.

Seasid profile image
Seasid in reply toMarkBC

You did find out what causing the PSA elevation. It was a cancer and your PSA dropped. My PSA is also rising. It is 0.9 now. I believe it is a cancer growing.

The fact is that if you have a prostate the PSA can rise as a result of infection and inflammation of the prostate. (That would be preferable)

I don't want to take anticancer drugs without real need.

Therefore I will probably wait until the PSA gets up to 2 and than make a decision.

Which yearly scans are you getting?

MarkBC profile image
MarkBC in reply toSeasid

You make a good point. I suspect that my steadily rising PSA over 9 months and my lack of any physical symptoms would indicate cancer growth vs infection/inflammation. I trust my oncologist completely. My partner is a cancer research scientist at the same facility and knows that she is on top of all the latest research.

I have my PSA and testosterone checked monthly. I have been getting annual bone and CT scans. I also recently had a bone density scan, three years after my previous one.

Seasid profile image
Seasid in reply toMarkBC

With such a low PSA does it make sense to do a yearly nuclear medicine bone scan and CT scan? (Maybe PSMA PET scan would be more appropriate?)

I believe the bone and CT scans are just not sensitive enough to show anything at PSA 0.9?

I am planning a PSMA PET scan at PSA 2.

At my current PSA level of under 1 i am just not sure if anything will show up even with the PSMA PET scan?

MarkBC profile image
MarkBC in reply toSeasid

While my PSA is low, my oncologist likes to do annual bone and CT scans to verify that no medically significant growth is happening. Some rare prostate cancers can grow without expressing much PSA.

A PSMA PET scan can identify much smaller tumours but it is much more expensive for the health care system and can expose the body to larger doses of radiation. It really only has two major uses. For diagnosis, it can help determine if a patient has reached stage 4 by finding out whether there are tiny metastases which are invisible on regular scans. After a stage 4 diagnosis, a PET scan can be useful to find troublesome small tumours which can be radiated (i.e. ones causing pain). Other than that, there is no need for the added expense of a PET scan. Knowing whether a stage 4 patient has a just few larger tumours or more numerous tiny tumours will not change the prescribed systemic treatment.

Seasid profile image
Seasid in reply toMarkBC

Is it possible that your cancer in one year convert itself into a prostate cancer which is not expressing much PSA?

The nuclear medicine bone scan gives you around 6 mSv radiation. The full body CT scan also give you lot of radiation. The radiation received bu this scans would be comparable with the radiation received by the PSMA PET scan.

The only reason to use bone and CT scan is to monitor the effectiveness of the medication (like enzalutamide as it could start fueling your cancer) you are using so you know when to stop. If you are only on ADT than you don't have to be so careful to stop your medication as you are on it life long.

MarkBC profile image
MarkBC in reply toSeasid

I'm not an expert in this. I've made a few points based on what I've read and on my discussions with my oncologist. Ultimately I trust my oncologist. She makes recommendations and gives me an explanation for those recommendations. She knows much more about prostate cancer than I ever will so I follow her advice.

Seasid profile image
Seasid in reply toMarkBC

My PSA is still very low. I would like to have a PSMA pet scan so see if i have any active mets. I don't believe that the bone and CT scans would be able to show anything at this stage. Maybe even a PET scan is not sensitive enough.

I have nothing against a bone scan if it provides me with useful information.

I wouldn't take bicalutamide like you as i believe it is to toxic, ineffective and may shorten in the future the effectiveness of the Enzalutamide, plus I can start fueling your cancer ones bicalutamide stop working.

I refused to take it. I am only on Firmagon injections.

MarkBC profile image
MarkBC in reply toSeasid

My original bone scan showed a few mets on my spine and ribs. Those mets were no longer visible in the last two annual scans, because of docetaxel and ADT. We assume that the mets are still there but just too small to be seen. There are probably other tiny mets as well. There is no point spending money on a PET scan to find those mets because it won't change my treatment plan at this time.

When my PSA rose from 0.17 to 1.0 in Feb 2021, the addition of bicalutamide knocked it back down to 0.10 and kept it below 1.0 for 1.5 years. We've stopped it now and will move on to abiraterone shortly.

Everybody's cancer is different and reacts differently to the various treatments available. My oncologist and I both think that the bicalutamide was helpful in my case.

Seasid profile image
Seasid in reply toMarkBC

Can you ask for a PSMA PET scan and if you see any highly avid met just to radiate it?

I t looks that you were oligometastatic. I would radiate on the PSMA PET scan visible tumors if they are small.

What do you think about this approach?

I had more than 15 mets.

ascopubs.org/doi/full/10.12...

MarkBC profile image
MarkBC in reply toSeasid

I didn't have a lot of visible mets at diagnosis but I am not classed as oligometastatic. One pelvic lymph node met was 6 cm at diagnosis, currently <1 cm. Other mets were seen in the spine and rib cage.

Radiation, at this point, will only be used to relieve symptoms such as pain. A PSMA PET scan might be needed then. Radiation now won't extend my life and it has the potential to cause other damage to the body.

Seasid profile image
Seasid in reply toMarkBC

My understanding is that if you have an active met and it is possible to radiate than it is maybe useful. I am not a doctor, but came to that conclusion reading this forum.

Could you talk to a RO? Maybe they know more than us? I am thinking about this approach.

MarkBC profile image
MarkBC in reply toSeasid

I have both an MO and an RO and consulted with both after diagnosis in July 2018. The original plan was chemo and ADT to be followed with radiation after chemo. This was standard of care in Canada at the time. In January 2019, both doctors changed their recommendation about radiation based on the results of the STAMPEDE trial that had been released in the interim.

prostatecancer.news/2018/09...

It remains both doctor's recommendation that, for me, radiation at this time will do more harm than good.

Seasid profile image
Seasid in reply toMarkBC

I understand.

How many active mets do you have now?

I call it active mets as I believe that they could be biopsied for genetic testing.

MarkBC profile image
MarkBC in reply toSeasid

There is only one visible met in a pelvic lymph node (<1cm and stable) as well as the main prostate tumour. The bone mets are no longer visible but, of course, they are still there. We can reasonably assume that there are other tiny mets which have never been visible. I am fortunate that I am healthy and stable after 4 years and that the mets are not causing any pain.

I have had a genetic test done and I do not have the BRAC mutation.

Seasid profile image
Seasid in reply toMarkBC

I found a member with this:

"The PSMA scan indicated to my MO (Rathkoph at MSKCC in NYC) that the only active tumor (of the 4-5 that I have) that "lit up" was the one in my left hip which had been radiated 8 yrs ago. She recommended with radiate again, (this time with the more advanced type of radiation,) and see what happens. First set of labs, about 4 weeks thereafter showed a drop in PSA from .36 to .05. "

What do you think?

Would you be able to radiate your active met? You could have a PSMA PET scan and than decide what to do?

Seasid profile image
Seasid in reply toMarkBC

Could they maybe surgically remove the active lymph node? (Laparoscopic surgery?)

MarkBC profile image
MarkBC in reply toSeasid

Surgeries and radiation are not harmless procedures and should only be done when the potential benefits outweigh the potential negative consequences. In my case, the oncologists say that the science demonstrates no benefit to doing either procedure on my mets.

My personal belief: In the profit driven American health care system, where some people have access to generous insurance coverage and others don't, there are doctors willing to do lots of unnecessary procedures to make money ... and that includes unnecessary PET scans. There are also lots of desperate patients who want to feel like they are actively doing everything possible to combat their cancer even when the science says that there is no benefit. Similarly, there are unscrupulous business people willing to sell questionable "miracle cures" to these same desperate patients.

I have doctors whom I trust and whom I know are guided by scientific research. I trust them and follow their advice.

Seasid profile image
Seasid in reply toMarkBC

Can you consult a surgeon to find out would it be feasible to remove laparoscoply you lymph node?

I understand what you are saying, but if you don't have a surgeon in your team than you should consult one.

I am thinking exactly the same way as you. I still believe that maybe the surgery could help if you have only one active met. You don't really know as you are avoiding PET scans.

I had 4 PET scans for science.

Before surgery you may wish to be for 6 months under Abiraterone or Xtandi (i would take Xtandi) and than remove surgically the lymph node.

I am not a doctor but i believe radiation and surgery are the only way to get rid of the cancer.

Ones your limph node is out they can analyse it genetically and maybe find an actionable mutation. I wouldn't go further with the surgery if it is not feasible. That is why we need to talk to a surgeon.

I had a fundal polyp in my gallbladder attached to my liver and the professor of GI referred me to the surgeon and I had a laparoscopic surgery to remove my gallbladder.

It was premalignant process and I am happy that I did that.

Seasid profile image
Seasid in reply toMarkBC

You can find out whit this scan if you have more limph nodes effected:

Head-to-Head Comparison of 68Ga-Prostate-Specific Membrane Antigen PET/CT and Ferumoxtran-10–Enhanced MRI for the Diagnosis of Lymph Node Me

jnm.snmjournals.org/content...

maggiedrum profile image
maggiedrum

You probably will be diagnosed as castration-resistant, thus opening you up for the drugs for that.

Seasid profile image
Seasid in reply tomaggiedrum

That is great.

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