3,5 years after diagnosis : All, here... - Prostate Cancer N...

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3,5 years after diagnosis

Paulo1968 profile image

All,

here is an update of my situation as I regular do.

3 year and 2 months ago I had surgery to remove my prostate. PSA has been quite low since then of around 0.03, but in April 2020 PSA started increasing slowly till yesterday that I got 0.25.

I haven't been kept still for a year already ... I paid visits to 3 different doctors and all 3 pushed back that my levels were low and that I shouldn't do anything yet. However when it reached 0.13 a doctor started investigated and she made me do a PET scan (galio68) and a MRI to rule out some doubts of the Pet scan. Both results came clean for the whole body except for a small anyway inconclusive area around the penis bulb area, but either exams were not matching on that inconclusive area.

So the lady doctor initially wanted to radiate the prostate bed, but changed her mind after the exams not being clear and asked me to wait some time more till PSA reaches eventually 0.25. She said a multidisciplinary team in the hospital were all united on this assessment. Anyway Bingo! I got it yesterday to 0.25.

I know that the odds of doing anything will be less successful as PSA increases and this is getting me nervous ... but having found a lighted area in the penis even if the the bottom of the penis makes me anxious.

Any comments? Really appreciate a feedback.

Paulo

37 Replies

Thee PSMA radiopharmaceutical is excreted from your urinary tract, so areas along the way often show up, but it doesn't mean anything. It is a mistake to wait and give your cancer time to grow and move - it is a self-fulfilling prophecy.

Paulo1968 profile image
Paulo1968 in reply to Tall_Allen

I know Tall_Allen, but here in Europe I don't see any doctor rushing to do a treatment with my PSA levels ... Thanks for your comment and I will insist with my doctor.

Dionysos profile image
Dionysos in reply to Paulo1968

Paulo, you must insist on further treatment. Don't let it go out of control

Paulo1968 profile image
Paulo1968 in reply to Dionysos

Hi Dionysis, I did insist. Later in the afternoon my doctor wrote and said she would speak with the radiologist... let’s see.

Gemlin_ profile image
Gemlin_ in reply to Paulo1968

If a PSMA PET-CT does not show metastasis, it is high time for SRT. Do not hospitals in Portugal offer PSMA-PET in case of a relapse?

Paulo1968 profile image
Paulo1968 in reply to Gemlin_

I have done a psma-pet-scan last February and body was clean. The result was inconclusive in that area I mentioned (penis bulb).

Your cancer, where ever it is located, is GROWING!. My medical oncologist keeps telling me that PSA > 0.03 for a sustained period after prostate removal means there is Cancer somewhere in the body. He and I are waiting on mine because it hovers between 0.04 and 0.07 for several years but has decreased over the last year.

But, to be very clear, as he is with me - You and I both have some Prostate Cancer somewhere in our body and it is not going to go away on it's own. I can wait a while longer but if mine had increased as has yours - I would be scheduling Salvage Radiation Therapy - soon!

Hi, I understand fully what you say, but I have a specific situation that creates doubts in doctor’s minds. How can anyone be sure where it is and one may end up radiating what we shouldn’t. That is what they say. I cannot apply for radiation without a doctor referral and they told me to wait. Now as PSA reached 0.25 she is having a look again at my case.

I have been chasing 3 doctors. I have to wait for what she (oncologist) discusses with the radiologist.

Till then, believe me, my anxiety is not decreasing.

Ciao

My medical oncologist recommended getting radiation when my PSA hit .1. I got 38 treatments of radiation with no side effects. Because I’m 50 years old my doctor wanted me to attack this aggressively.

Paulo1968 profile image
Paulo1968 in reply to MrkP

Thanks for your message. Similar to me when I got to 0.13, but after the pet and mri she wanted to wait, as I explained in my previous posts. I need to trust her judgement and wait her feedback with the radiologist. At this stage I won’t change doctors...

Paulo1968 profile image
Paulo1968 in reply to MrkP

When did you hit 0.1?

MrkP profile image
MrkP in reply to Paulo1968

I had surgery In 2019. And my PSA hit .1 in February 2021. I just completed radiation. I had Gleason 9 cancer which is another reason why the doctor wanted to start right away.

I believe you are right. Wait until it can be found so you can be sure you are getting the right area treated. Your PSA was probably too low to show on a PSMA scan. Then get the radiotherapy you need and strongly consider hormone with it for at least six months.

Paulo1968 profile image
Paulo1968 in reply to Bcgkelly

Thanks Bcgkelly, I am waiting for the doctor to tell me what they think I should do. 😊

Bcgkelly profile image
Bcgkelly in reply to Paulo1968

That’s the right thing to do. I’m now at 0.068 on the way up for the second time. Has stereotactic radiotherapy to one node but it wasn’t enough. Doctors think I should wait until it is 0.5 until I get a PSMA scan but Im nervous about waiting that long. I’m interested to hear about you as we appear to be similar. Best of luck.

Paulo1968 profile image
Paulo1968 in reply to Bcgkelly

Indeed. The waiting is crazy!

Yes I will keep you posted.

If you don't have a PC re-occurrence how do they explain your rise in PSA? You need to get radiation now.

Paulo1968 profile image
Paulo1968 in reply to fluffyfur

Hi fluffyfur, I have a recurrence because my last PSA was over 0.2.

The point is where to target the radiation? The doctor wants to be sure to target well the radiation. As I explained all body was clean as per pet and mri except an inconclusive area which is not and in the prostrate bed area. Would you ask for radiation even if the doctor advised you to wait?

I wished it would be simple.

Thanks for your concern. I am waiting for a feedback from my doctor who wanted to discuss this with the radiologist.

fluffyfur profile image
fluffyfur in reply to Paulo1968

Yes I would. Did you have a positive margin or any EPE after your surgery? New research has found the SOONER you get salvage radiation the better your outcome when your PSA begins to rise.

My husband finished 35 sessions last year after his PSA began rising after a RP. He started speaking to radiation oncologists when his PSA got to .1. By the time things got moving (due to Covid) his PSA was already at .3

Paulo1968 profile image
Paulo1968 in reply to fluffyfur

My post RP results were good. Tumor was confined to the gland and PSA levels stayed undetected for 2 years.

I have been followed by my urologist till Psa reached 0.13. Then I moved to an oncologist, who has made me do a PET and MRI. All the way I always mentioned what I knew about studies and my worries about postponing earlier treatments.

All said, I have been followed ... and I need to trust their judgement.

Thanks for you message anyway. I take seriously your advise and comment. I hope in the next days to have an answer.

fluffyfur profile image
fluffyfur in reply to Paulo1968

As early as 2002, Choo et al[26] described the lack of efficacy of SRT - with 5-year biochemical control rates < 35% - in patients with PSA levels > 2 ng/mL or with local macroscopic recurrence. In the meta-analysis by King and colleagues[27], . the PSA level prior to SRT was directly related with the probability of disease response and control: for each 0.1 ng/mL increase in the PSA level at the time of BCR, the biochemical relapse-free survival (BRFS) rate decreased by 2.6%Numerous authors consider PSA ≤ 0.5 ng/mL as the optimal level at which to initiate “early" SRT[6-9]. In their study, Fossati et al[7] found that biochemical control in patients who underwent SRT with PSA levels ≤ 0.5 ng/mL was comparable to that obtained in patients who received adjuvant RT; however, patients with persistently elevated postoperative PSA levels were excluded from the comparison.

The available evidence indicates that the lower the PSA level at the time of BCR, the better the outcomes of SRT.

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

Paulo1968 profile image
Paulo1968 in reply to fluffyfur

Thanks. I will bring this in my mind in the discussion with the radiologist next Monday.

Bcgkelly profile image
Bcgkelly in reply to fluffyfur

From the study you have quoted

It is important to keep in mind that administering SRT in patients with PSA levels > 1 ng/mL without first localizing the lesion via imaging tests increases the risk that the affected area (particularly lymph node regions) will not be adequately irradiated.

This is exactly the point. Many medical professionals believe in some cases it’s important to try locate where the cancer is to ensure the radiotherapy is directed at the cancer. When my reoccurrence was located by PSMA scan it was in a lymph node outside of the prostate bed area. if the traditional approach had been taken to treat the prostate bed they would not have treated the area the cancer was in and the addition of ADT would have reduced PSA levels anyway giving the impression in the short term that the right area had been treated.

fluffyfur profile image
fluffyfur in reply to Bcgkelly

Yes that applies to patients with PSA greater than 1. I am not arguing that a PSMA should be performed (it should) but if it doesn't detect the location of reoccurrence (which at low PSA it may not) then it is not ideal to keep waiting until it does. Next sentence in the article.

We recommend performing SRT in patients with PSA values < 0.5 ng/mL provided that the patient has a life expectancy > 10 years and no medical contraindications.

Justfor_ profile image
Justfor_ in reply to fluffyfur

You wrote: "...but if it doesn't detect the location of reoccurrence (which at low PSA it may not)".

This is a silly attestment spouted out by the average lazy doc allergic to continuing education.

But, we are fortunate enough that there are others researching and publishing. Take for example those from Down Under:

"Results

Of 222 patients, 155 (69.8%) had evidence of abnormal uptake suggestive of recurrent prostate cancer. The detection efficacies for [18F]DCFPyL PET/CT were 91.7% (44/48) for PSA levels ≥ 2 ng/mL, 82.1% (23/28) for PSA levels 1–1.99 ng/mL, 62.8% (27/43) for PSA levels 0.5–0.99 ng/mL, 58.7% (54/92) for PSA levels 0.2–0.49 ng/mL, and 63.6% (7/11) for PSA levels ≤ 0.2 ng/mL. In those with PSA < 0.5 ng/mL, 47.6% (49/103) had detectable lesions, 71.4% (35/49) had disease confined to the pelvis, 22.4% (11/49) had prostate bed recurrence, 49.0% (24/49) had pelvic lymph nodes, and 28.6% (14/49) had extra pelvic disease."

Excerpt From:

[18F]DCFPyL PET/CT in detection and localization of recurrent prostate cancer following prostatectomy including low PSA < 0.5 ng/mL"

link.springer.com/article/1...

If 7/11 under 0.2 and 54/92 between 0.2 and 0.5 are not good enough, but 14/49 with extra pelvic disease who will receive blind irradiation for absolutely no (therapeutic) reason, apart of course for creating some turnover at the patient's expense of long term toxicities and even secondary cancers, is ok .....

And those docs have taken the Hippocrates oath.

fluffyfur profile image
fluffyfur in reply to Justfor_

And here's a study from Down Under showing PSMA only detected 11 percent of cancers in those with a PSA of <.2

So which study is right? And how long do you keep waiting and repeating the PSMA until your cancer shows up?

bjui-journals.onlinelibrary...

🤷‍♀️

Justfor_ profile image
Justfor_ in reply to fluffyfur

Yes, I noticed...

a) Published in 2016, 5 years earlier than the one I mentioned (Jan 2021).

b) Radioligand 68Ga PSMA 617 vs recently approved in the USA 68Ga PSMA 11 and 18F DCFPyL like the one I mentioned.

c) "Intravenous injection of 150–200 MBq" vs "The 68Ga PSMA-11 solution was administered to the patients as an intravenous bolus injection (mean 227 ± 66 MBq, range 66–400MBq)" pubmed.ncbi.nlm.nih.gov/284...

d) Five years for electronics (sensors, processors, etc) and software (image processing algorithms, resolution, filtering, etc) is, very conservatively, a generation apart.

Hi I am 0.076 and probably rising. I spoke to oncologist, he said do next test in August then see him. He will arrange scan if it's gone up (I know it's unlikely to pick anything up at these levels) and radiation would be a little wider than prostate bed, more targeted if scan shows anything. I don't think you can wait for a scan to show it if it's rising above 0.1. good luck. Ps just read a paper that shows no benefit of 70Gy over 64Gy dose for salvage.

Paulo1968 profile image
Paulo1968 in reply to julianc

Thanks julianc, fir your feedback. I have read the article 😊

Paulo1968 profile image
Paulo1968 in reply to julianc

Hi Julianc, I saw your profile and the last post. With your PSA levels all the 3 doctors I went to would tell you it is still too low to worry. I had once one doctor explaining me that there can be some prostate cells left after surgery that can produce PSA and over time the PSA can increase. Of course not my case anymore as I got over 0.2 :-(

A year after my prostatectomy, (in April 2016 at The Christie, Manchester) my PSA reached 0.25 (in Nov 2017) and I opted to go for hormone treatment and radiotherapy at The Christie in Salford. The HT started Dec 2017 with tablets, then 3 alarmingly big needles. In March 2018 I had the radiotherapy. Since then my highest reading has been my latest this April at 0.03.

Thanks for the message. First, glad the PSA has gone down a lot and stayed low 😊

Can you tell me why you opted fir HT first? How was you surgery report? Did you do any exam prior the treatment or you did straight ahead when reaching the 0.25?

I put a page on my website with all the story on it.

perseverancesite.co.uk/canc...

Hope that helps.

Thanks 😊

After the prostatectomy, I was clear for just about a year, then my PSA started to rise very slowly. The levels are on the page in the link above. I saw the specialist at Bolton Hospital and he offered me the choice of HT or RT - or both. I basically said 'Gimme what you got' and that was his preferred running order. Some time with HT to reduce the testosterone level, then the radiotherapy.

All, I had the appointment with the radiologist as expected today. I am doing a pet scan again next Wednesday and I am targeted to have radiotherapy latest starting on July the 12th. The new PET serves to rule out the inconclusive areas highlighted in the previous one. She explained they haven’t seen too often or seldom areas as such that are highlighted in the scan, thus the check.

Thanks for all your support and feedback.

Best of luck Paulo

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