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Systemic Treatment – my experience and update

VascodaGama's picture
Posts: 3073
Joined: Nov 2010

Though the title of the thread doesn’t instigate reading for many of the attendants, the term systemic surely will strike the curiosity of some as it did to me back in 2001 when I was diagnosed with recurrence after prostatectomy. It has just passed seven months since RP and I was again hearing about cancer.
I felt frightened and did not know what to do or expect but, then, there was this lovely “Guard Angel” appearing from nowhere helping me with opinions on what was going on. The Angel was Mrs. Jacqueline Strax (of psa-rising). She started by saying “... first thing is to check if you are systemic”.
What a hell, what does that word mean?

Well, I wasn’t systemic at the time but ten years later in 2010, after a second recurrence from salvage radiotherapy, the doctor diagnosed me with systemic disease.

In several past threads I have narrated the pitfalls and events experienced along the years of my PCa story, including the failed commitment in trying to locate the bandit with sophisticated PET scans, procuring still an opportunity in getting cured via an oligometastatic treatment (https://csn.cancer.org/node/314326).
The update today regards the last consultation which I thought that would represent the re-start of my Systemic Treatment (intermittent ADT) started in 2010 and which has been on hold since 2012, but the doctor put it simple. He just said “… … we should wait till the PSA gets to 2.5”.

The fact is that my PSA has been on “ups and downs” since September of 2017, with varying values between 1.80 and 2.14, but the trigger level for restarting treatment is set to be 2.5 ng/ml. The last PSA (Nov 2019) was 1.95 (T=357) lower than the previous of 2.14 in Aug 2019.

I inquire the doctor what could be the reason behind this pattern of the PSA showing sharp increases and decreases, and plateaus in between, along the seven years I have been without treatment. I know that this is typical in benign issues like BPH but I have no prostate gland in place. Is there any particular understanding on these results? Is it a signal that cancer is spreading to far places?

He said; …   … No no !
His opinion is that both; the long period PSAdt and behavior reflect the type of the low aggressive cells which were in fact the initial diagnosis back in 2000 (Gs: 2+3; 5). Gleason grade 2 cells behave more like benign ones but they are cancerous. He also suggested that by delaying ADT further till it reaches 2.5, I am not risking a spreading to far places. That comment was wonderful but I am still worried. In any case, I will wait till the next consultation scheduled for June 2020.

For those interested in the details pertaining to my case;
I was diagnosed in 2000 at the age of 50 with a PSA of 22.4 and a Gleason score of 5 (2+3), which data was reconfirmed by the pathologist post open surgery. His report also indicated a voluminous cancer occupying 2/3 of the gland, negative seminal vesicles and negative lymph nodes (9 numbers dissected) but positive margins.
The PSA at one month post OP was high at 0.18 and that increased to 0.42 in just six months. Recurrence was declared in March of 2001, leading to consultations with respectful oncologists at JH and MSKCC. Metastatic cancer of Gleason score 5 wasn’t common and that arouse the interest of researchers and specialists regarding the characteristics of my case.
Instead of immediate salvage treatment, the doctors recommended WW (the AS of the old times) followed with a series of periodical tests and image exams (BS, CT, MRI, X-ray) that were negative along the 5 years of waiting. The only recommendation was for daily supplements (Selenium, Vitamin E and aspirin 100mg) and some changes in diet.
In the fall of 2006 the oncologist at JH finally recommended me to start radiation therapy (SRT) due to the PSA that was close to their established threshold of 4.0. The RT covered the prostate bed and localized lymph nodes (no definite targets), with a total dose of 68 Gy delivered in 35 sections done during two months. The PSA at the start was 3.86 and this declined to 0.05 ng/ml, 13 months post RT representing success. However, three years later the PSA rouse again and I become a systemic patient.

In another forum, I received comments suggesting that I should have been put on radiation sooner instead of watchful waiting but my case was unique constituted of low grade micrometastases that were known to respond badly to the traditional sequential treatments involving salvage radiation. Nowadays similar cases of micrometastases in surgery failures are moved directly to chemotherapy instead of radiation as it covers wider areas and it doesn’t dependent of existing targets, as required in radiation treatments.

My lay opinion regarding Systemic diagnosis and treatment is that these are planned according to the status of the patient, at the time that such has been declared. Those with no apparent far metastases and that have come from failed radicals (RP and/or RT) and subsequent salvage therapy, are usually recommended for androgen deprivation therapy (ADT). Advanced cases categorized for existing far metastases and/or uncontrollable PSA, to whom radicals would not do much, are usually recommended to systemic chemotherapy. The combination of these modalities is also used as a multimodal treatment, which outcomes have demonstrated in trials better results.

ADT involves manipulations intended to block the bandit from having access to the androgens circulating in our body (testosterone and dihydrotestosterone). The cancer feeds on androgens and without them it dies or turns indolent during long periods that can last ten or more years. In the case of Chemotherapy, the treatment aims directly the cancerous cell trying to avoid these from dividing and multiplying. The chemo works by destroying the DNA of the cells. Surely this sort of action will also affect benign cells so that the dose is small falling short in the killing capabilities, making the treatment palliative and not curative.
In patients with some particulars, oncologists treat systemic disease with immunotherapy. The treatment consists in manipulating the immune system trying to trigger its natural actions in handling or attacking and repairing what is considered foreign, malicious or malfunctioning (virus, bacteria, cancerous cells, etc) which are or have put into jeopardy the proper functioning of the body. This is a wonderful way to treat maladies, particularly as it works systemically covering the whole body. However, messing up with our immune system requires careful vigilance as it may interfere with the body’s defenses mechanism. By inactivating the immune system, one risks infection that could initiate other diseases or even leading to death.
However, well applied and regulated immunotherapy, using sort of agents (monoclonals) that have been studied along the years, one manages safely to switch off those mechanism in cells’ DNA, which got the purposes in protecting the cell from destruction. In other words, the immunotherapy can be manipulated to directly disturb cancerous cells facilitating the treatment/drugs taken to kill the cancer.

Medical oncologists are the best choice to treat systemic cases. These have the experience and knowhow needed in drugs interaction and on their effects in the patient, particularly when other illnesses exist or are expected to arise (aged patients) and need separate medication too. Surely, those traditional treatments administered sequentially (such as ADT) which got well established protocols are also administered by the urologist attending us.

My systemic ADT experience started in Nov 2010 with a PSA of 1.0 ng/ml. The chosen protocol by my doctor (uro-oncologist) was mono blockade done with the agonist Eligard (leuprolide) 6-month shot. This was preceded with one month of daily antiandrogens Cyproterone acetate 50mg. The therapy was programmed for intermittent administration regulated via ON and OFF periods. The “ON-drugs” would be 12 months of constant remission in PSA levels (less than 0.05 ng/ml), followed by “OFF-drugs” which period would last till a surge of the PSA reaching a level of 2.5 ng/ml.

In my “ON-drugs” period I managed remission during 18 months. That was caused by a long period in chemical castration with the testosterone (T) lower than 30 ng/dL. Initially, before the Eligard shot, the testosterone was 376 ng/dL and it dropped to 28 in just one month. The PSA also accompanied the decrease becoming 0.05 six month post the shot’s administration. Both levels (T and PSA) continue to drop to the assays low limit of detection (LLD) of T<0.1 and PSA<0.02, during and after administration of the second and third Eligard shots in June and November 2011. In total I was in remission levels (PSA<0.05) from May 2011 to November 2012. The effect of the last Eligard ended in August of 2012 leading to a gradual increase of the T and PSA. By January of 2013 T has returned to normal levels of 252 ng/dL and the PSA increased to 0.13 ng/ml, out of remission.

My experience while ON-drugs included numerous but mild side effects being fatigue the one most annoying. Some effects were present but unnoticed. I could relate some symptoms latter that I thought existing due to other factors such as aging. One example is the rheumatism/arthritis symptoms that increased gradually at the last months of the ON-drugs period (feet and knees), but that suddenly started to disappear gradually accompanying the increase of the testosterone when on the OFF-drugs period. Mood changes and fatigue were also reduced to 2 in a scale of 1 to 10 and the testicles become firmer again from a spongy like shape when ON-drugs. Libido was back with some action but the penis still shorter as it has been since surgery.

I feel fortunate for the positive response the cancer shown against ADT. I hope it becomes sort of indolent again when I restart treatment. Sorry for the long thread.

Best to all,



Posts: 180
Joined: Jan 2013

Hi Vasco,

I really appreciate your concise summary of your journey with PCa.

As previously diiscussed, I believe that I am on a similar path as you in my PCa journey, though you may currently be further along in your journey.  As with all of your posts, I find your summary to be extremely informative.  Even though everyone's PCa journey has its own unique elements, your summary gives me a much clearer insight into what I may be facing, as I progress along on my own PCa Journey. I am also greatly encouraged that you are 18 years into your PCa journey, and you still are able to embrace life and find great quality and satisfaction in your daily life and experiences.

This Forum and its members are SO much better off, for your presence and continuing perspectives and lay guidance.

I continue to wish you the best of outcomes on your PCa journey.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3347
Joined: May 2012

Thank you, Vasco. I knew a goodly bit of what you wrote, but this Abstract presentation is wonderful.   You must be one of the few guys to test with a Gleason of 5 and then have this many years of a fight....   I know the info is of great use to many.   No one navigates like the great da Gama



Posts: 481
Joined: Jun 2015

Hi Vasco,

Great post about your jouney so far. Every time someone posts I always look to see what Vasco has to say. You have been a great resource for many of us "survivors" and newbies alike with your knowledge and insight.   Hope you get to hang around for many years to come and your quality of life is good. Your help here is remarkable and appreciated.

Dave 3+4

Georges Calvez
Posts: 321
Joined: Sep 2018

Hi there,

I think it is worth noting that Gleason grade 5 ( 2 +3 ) is no longer used, if Vasco was diagnosed today he would be given a Gleason 6 ( 3 +3 ) as cells with a Gleason Score of 2 are no longer counted for grading purposes.
One of the unusual things about Vasco's PCa is that he has cancer that spread outside the prostate, this is very rare for such a low Gleason Score where the primary treatment was a radical prostatectomy.
He also had an open prostatectomy which is very rare these days with the choice being between laparoscopic and robot assisted laparoscopic surgery.
He also had radiation alone after a long wait whereas today I suspect almost everyone in his shoes would be put down for six months of ADT plus salvage radiation almost immediately his post operative PSA rose above the limit of detection.
In France having positive margins is a reason for preventative ADT and radiation, they do not wait for it to come crawling back out of it's hole.
It is a testament to Vasco's longevity that the course of treatments has changed so much.

Best wishes,


Posts: 911
Joined: Jan 2010

Vasco, What an exciting ride this PC stuff has given you!  But amzingly, you are still here, too.  My PSA never went over 12 but my first gleason score was 4+4 and 6 weeks later it was at 5 + 4.  

That suggests to me PSA can be a very poor indicator of what is going on inside.  

Very glad to see you are stil with us.


Georges Calvez
Posts: 321
Joined: Sep 2018

Hi Trew,

You are right there.
There is a very poor correlation between the level of PSA and the scale of the cancer.
Most doctors hate maths, if they liked it more they might have become physical scientists :-)
Roughly speaking, and this is subject to a lot of caveats as different cancers have very different behaviours, but there is a direct proportion between the level of PSA and the tumour volume and an inverse relationship between the PSA value and the Gleason score.
This is because the bigger the tumour the higher the level of PSA in the blood.
But low Gleason grade cancer cells are more like normal prostate cells insofar as they make PSA, etc and do not go walkabout making metastases. Higher grade cells do not bother with making PSA and get on with metastasing.
This is one of the reasons that the thankfully rare Gleason 9 and 10's are so dangerous.
The PSA remains close to the norm and there is not a lot to find by a DRE, Digital Rectal Examination, but they may already have moved elsewhere.
Men with Grade 4 metastatic disease have a much brighter future than they did even five years ago.
It is very case dependent, tell us more about yourself and we might be able to help you more.

Best wishes,


VascodaGama's picture
Posts: 3073
Joined: Nov 2010


Being diagnosed with cancer at a time when I was feeling invincible on my 50th was very traumatic to me.  I recall that mental imagery mimicking walkways, leading to the infinite, with people in line moving forward. I was walking along too but on a side narrow pathway running along but curving and rising to one side deviating further at the end. I still have this visual imagery sometimes, but the pathway seems to be now filled with people walking towards their destiny.

Thanks you for the comments on my above post. I think it long and I wanted to make it shorter and easier for the newbies to read but after 19 years on the run I felt that there were more to write than to cut.
Your presence in this forum is surely much appreciated too. I am grateful for your opinions that have elucidated me in matters I didn't understand and on those lesser traditional. Any comment posted here makes a difference to all those afflicted with our common disease.

I wish that we could say one day “I am cured, goodbye! ”



Posts: 45
Joined: Aug 2019

Thanks for sharing your story and reminding me not to become complacent about regular follow-ups after my RARP.  It is very encouraging to read how you have fought and won this battle for 18+ years.  I'm in my early 50s so figure I will have a similar fight ahead of me although I recognize no two stories are the same so my side narrow path will have different curves and hills.  My first PSA post surgery was undetectable so that was encouraging.  My biggest physiological challenges so far are regaining contenance (improving daily) and ED (viagra helping some but still a long way to go).  My biggest mental challenge is meeting other survivors and hearing, "Wow, you are so young."  I plan to avoid this by no longer attending a PCa support group.  I am thankful for this discussion board and reading stories like yours which gives me hope.

lighterwood67's picture
Posts: 228
Joined: Feb 2018

Your test tube has certainly been sampled.  Have to read your story and reread your story.  Quiet a wealth of knowledge for us on this site.  You have helped a lot of folks (including me) on this site.  And maybe one day we will be able to say, "we are cured".  Keep sharing the words with our friends in need.  They are not in vain.

Georges Calvez
Posts: 321
Joined: Sep 2018

Hi there,

I was on a career conversion course whan I was diagnosed at 55 and I was working flat out. I did not have a lot of time to do research but I knew that a PSA of 133 was bad before I saw the urologist.
It then turned out to be better than I expected, no detectable metastases, the tumour highly focused in the prostate, so yippee for that.
The bad news was that the doctors thought that my best chance was a prostatectomy, plus radiation and ADT.
Two years later I know a lot more about prostate cancer and I have met a lot of men online with cancer who are in better and worse situations than me.
Maybe I am really cured or maybe it will come sneaking back, who knows, I may be on a quiet bit of the coaster or I may have stopped in the station.
On the latter front I am in the same boat as men who have have been treated for high grade prostate confined tumours.
It may take years for metastases to occur but in a proprtion of cases they will and need further treatment.
I feel that Vasco is on a plateau with his PCa, it is not doing much and it could continue like this for years.
Let's hope so!

Best wishes,


lighterwood67's picture
Posts: 228
Joined: Feb 2018

Keep posting.  Your test tube has been sampled a lot too.  I think we come to a point that we are in a coexistence state.  A sort of homeostasis with this cancer.  And if that is cured.  I will take it.

Posts: 10
Joined: Sep 2019

Thank you Vasco for always sharing on this forum with us all.  You have had quite the journey and I'm sure many of us have learned from your extensive expereince.  I will keep you in my prayers as you continue to battle the beast and look forward to the day we learn of further progress in beating this disease!  God bless!


Posts: 14
Joined: Nov 2019

Hey Vasco, I appreciate getting a chance to read your story in full so thanks for putting this together.  There is a lot we all can take from it.  Among others, I admire the shire determination you exhibit in ridding yourself of this unwelcomed intruder.  You are the best man.  Happy Holidays !!



Posts: 445
Joined: Mar 2017

We've said before... "It's not about the cards you're dealt, but how you play the hand."

If life was a game of strip poker, and judging from the way VdG plays terrible cards, everyone else would be naked before VdG even loosened his tie.

This is my insensitive way of expressing my admiration the way VdG has taken a bowl of sh*t stew and turned it into a gourmet dish that even Gordon Ramsey would grudgingly approve of, and then shares it regularly with total strangers.

Kudos to him for facing such difficult odds and still sharing his experiences in such an analytical and erudite manner.

Posts: 180
Joined: Jan 2013

Well said, Grinder.  I could not have expressed a better metaphor for describing Vasco.

Posts: 768
Joined: Jan 2010

As always, very informative and positive....thank you

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