CSN Login
Members Online: 4

You are here

Prostatectomy + RT + ADT

Georges Calvez
Posts: 297
Joined: Sep 2018

I have created this new topic to document my case which I believe may be interesting to members .

I was diagnosed shortly after my 55th birthday with a PSA of around 130 and no other symptoms, nothing, nada, everything worked absolutely normally; I had a small prostate with about 40% of it filled with a Gleason 7 tumour. and seemingly not a lot else; nothing in the bones or internal organs that any scan could see
I have subsequently gone through an laparascopic prostatectomy; there are bad bits to these that only those that have shared them can tell you about. The gas pains, in France they give you ketamine for the postoperative pain and it results in hallucinations for a few days, bad constipation for a week and the odd nightmare for months after, the weeks after the catheter removal when you think you will never hold your pee again, etc.
Five weeks after the operation I had a PSA of 2 that fell to zero after a few weeks on Firmagon.
I have had 66 Gy of radiation plus 6 months of Firmagon now and I probably have another two and a half years, maybe less as I am doing so well or maybe the dreaded Luperon.
I am hoping that the residual cancer was concentrated in the urethra, bladder neck, etc which has been given an extra zapping or in the immediate pelvic area that was given a gentle roast, that and the Firmagon will hopefully destroy any little satellites.
I could be dead in more than five to fifteen or more, I  was a scientist and then I worked in IT so I am a bit of a dab hand at data but there is really no way to know.

VascodaGama's picture
VascodaGama
Posts: 3032
Joined: Nov 2010

GC,

Thanks for sharing your story. Nowadays rarely we read in the forum from guys that did open RP. I am one of the open group too. My experience was easy with no troubles. I had the surgery in Japan done by an experienced Japanese surgeon, who was the director of the urology and in charge of the operations. His policy was not to discharge patients with the catheter on, so that made me stay at the hospital (big one) for additional 12 days.
Along that period I benefited from the services of the many professionals (doctors, nurses and staff) that visited my room everyday checking everything. It sounds luxury when comparing with the guys on robot surgeries that go home 2 to 4 days later, but that was the standards. There were no robots around in those times and everyone were treated equally.
In spite of the privileges I received from the several specialists, I still recurred and had to go through radiation and ADT along my 18 years as a survivor. I did it in sequential not as a combination therapy that is nowadays very much on demand

I do not understand where you base your comment regarding survival. Were you classed on stage 4?

I hope that you have fully recoperated from the interventions and want to listen about your zeros soon.

Best wishes,

VG

 

 

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi Vasco,

I wrote the above rather quickly and late at night as it was originally posted in another thread so it has a few tiny errors.
My surgery was actually laparoscopic so manual but done through small holes, a half way house!.
The big debate is if the residual cancer evidenced by the post operative PSA of 2 is associated with the bladder or other structures or has gone off and formed micrometastases elsewhere.
As far as anyone can tell I have not got any metastases in my bones or soft tissues on the basis of technetium scintillography, gadolinium MRI and iodine x ray.
Pre operatively I was a Gleason ( 4 +3 ) 12 cores positive, post operatively I was staged pT3b pNO with peri prostatic, capsular and seminal vesicle invasion but the nerves were clear and as far as the surgeon could find the lymph system as well, so there is good and bad news there.
I am on ADT for two to three years so I think I can bank zeros for those years and then maybe for at least a year or two after, after that who knows?
If it does progress then I think it may progress quite slowly.
One thing I know is that I am already pretty lucky most men with a PSA of 130 have got metastases all over the place, I am completely clean or only have tiny and at the moment undetectable ones.

Best wishes,

Georges

Georges Calvez
Posts: 297
Joined: Sep 2018

8 September 2017 131     Dx
14 Septembre 2017 144,90
Prostatectomy non nerve sparing 19 February 2018
26 March 2018 2,03 Five weeks after the operation
30 March 1st injection Firmagon
12 April 2018 0,27
15 May start of 66 Gy radiation
25 June 2018 < 0,03 Cobas Roche electroluminescence ECLIA sandwich (sérum plasma )
2 July end of radiation
26 September 2018 < 0,03 Cobas Roche electroluminescence ECLIA sandwich (sérum plasma )
26 December 2018 < 0,05 Architect Abbott chemiluminescence CMIA ( sérum )
25 March 2019 < 0,05 Architect Abbott chemiluminescence CMIA ( sérum )
25 June 2019 < 0,05 Architect Abbott chemiluminescence CMIA ( sérum )
25 September 2019 < 0,05 Architect Abbott chemiluminescence CMIA ( sérum )

 

As you can see I had two results fairly close together that show a rising trend and then no tests for the four months up to the operation, in that time it could have been fairly stable or risen to more than a couple of hundred, we really do not know.
Five weeks after the operation it had collapsed to 2,07, indicating that the bulk of the tumour producing PSA was gone, I think that it might have declined further as I have seen other cases on Yananow where it continued to decline. No matter as I was strongly advised to take Firmagon, I had another test on the 12 of April that showed a further decline and I suspect that I was at the limit of detection for the end of the month, certainly before the start of the radiation.
Conclusions, most of the tumour is gone, the remaining fraction is highly susceptible to testosterone deprivation for the moment.

Georges Calvez
Posts: 297
Joined: Sep 2018

Visited the urologist this morning, as I expected there is nothing to do in terms of scans, so it is now a waiting game.
I have another twelve months of degarelix aka Firmagon and then we will see.
Next blood test at the end of December, hopefully another zero as a Christmas present for me and my wife.

Georges Calvez
Posts: 297
Joined: Sep 2018

It is my 56 th birthday tomorrow.
I have lived a fairly stormy year with PCa, from the initial diagnosis when things looked bleak, through the RP, the radiation, etc, to now when things look better and I am in a  waiting game.
Last night I told my penis, onwards and upwards but he was not listening!

Best wishes all,

Georges

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi everybody,

I have just had my copy of the circular letter sent from the urologist to the radiotherapist, general practitioner, me, etc, after our last meeting and it says not less than eighteen months of ADT.
This is sounding a lot better than the two to three years that may have been on the table only three months ago.
Two years or less may offer me more of a chance of fishing something out of the fire in terms of having the protective effect of testosterone recirculating in my body and even my sexuality.
On verra, but I think stop after two years of Firmagon, if the cancer was undifferenciated and localised, maybe it really is all dead, and I can walk away, another year will have a lot of effects on me for not a lot of gain in terms of killing the beast.
There is nothing to show cells with a Gleason number greater than four, OMS three.
If I have metastases then another year may not matter a lot.

Best wishes to everybody in your own private battles,

Georges

VascodaGama's picture
VascodaGama
Posts: 3032
Joined: Nov 2010

Georges,

I think that the ADT 18 months is attributed to your initial diagnosis (Gleason rate 4 in 12 cores) and stage pT3b. It is aggressive and the results of longer periods in ADT in the combo HT+RT have been better.

ADT in RT wars works with two principles. It sensitizes cell's AR for better absorption of the radiation and it prolongs the radiation effects along cell's life cycle. This period goes from two to six months in one single cell but the longer period on ADT will also cover the cycle of newer cell's replicas that could have survived the RT's DNA destruction. I hope you manage the side effects and tell us about the good results when the ADT effects vanish.

Congratulations on the low PSA. This is your first zero.

Best wishes,

VGama

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi Everybody,

I have just updated my PSA timeline with my last result in December.
I now have very high blood pressure and my blood glucose is close to type 2 diabetic with my cholesterol creeping up but my weight and BMI remain broadly constant.
How far I will return to normal when the hormone therapy ends is a moot point, some men recover and others quite frankly do not.
We do not have any data like a SHBG and testosterone assay prior to the debut of hormone therapy so all we can say is I am relatively young which is good but hypertension and a high blood glucose are not good omens.
The good news is that metformin at 500mg twice a day does not seem to have any adverse effects but the effect on my glucose level is so far unknown, irbesartan has bought my blood pressure down but not by enough.
I will be so glad when the hormone injections stop.

Best wishes,

Georges

VascodaGama's picture
VascodaGama
Posts: 3032
Joined: Nov 2010

Just a note of precaution regarding the interaction of nsaid with high blood pressure drugs. Ibuprofen may be involved in your hypertension due to the hormonal manipulation and supplements. Do your research (webmd) on the matter and discuss with your doctor.

Hope for the best.

VG

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi Vasco,

I have already discussed the ibuprofen with the medecin traitant and there is no problem.
If my psoriatic athritis bothers me I take it for a few days, same with the injections of Firmagon which hurt on the second day.
I like www.drugs.com for researching drugs, the professional bit is really useful.

Best wishes,

Georges

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi Everybody,

Went down to the lab this morning for the pris de sang, resultats ce soir!
Champagne and bennies or whisky and nembutal ce soir! :-)

Best wishes,

Georges

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Eh Bien, mon ami. Bon chance! I suggest Champagne washed down with Courvoisier!

H

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi there,

This is one in the eye for Eeyore with his 'You're going to die young Christopher Robin!'
Hopefully Tigger will be ecstatic and I will get off the degarelix in September.
It is doing my head in.
Parrrty tonight :-)
25 March 2019 < 0,05 Architect Abbott chemiluminescence CMIA ( sérum )

Best wishes,

Georges

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Bravo sir!

I assume T levels were checked and are still low?

H

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi Cushions,

There is no point in testing the testosterone all the time on degarelix, it heads for the deck and stays there.
One of the arguments for the superiority of degarelix over luprolide is that there are no microsurges after each injection which happens with some men on luprolide, this drips a little life to the cancer.
There are also GnRH receptors on some types of prostate cancer cells and degarelix may block these as well, quite what the effect of this is no one seems to know.
I am just hoping that I recover some testosterone when this stops.
I lie there at night swearing at my leg pains, it drives the wife nuts.
Off to drink Leffe and eat Toulouse sausage and chips.
I am going to beard Tigger in his den 9:45 Jeudi matin!

Best wishes,

Georges

hewhositsoncushions
Posts: 279
Joined: Mar 2017

By eck I miss sausage and chips :)

Josephg
Posts: 165
Joined: Jan 2013

I am so happy for you, Georges.

I will toast you tonight!

VascodaGama's picture
VascodaGama
Posts: 3032
Joined: Nov 2010

While having zeros is to celebrate I would prefer to have the champagne (Magic Door La Cle de la Femme Brut is my choice in celebrations) when the T levels are back to normal in close future.

In any case I will toast this moment with a glass of my best red.

 Congratulatioins.

VG

hewhositsoncushions
Posts: 279
Joined: Mar 2017

I think George's celebration is around the fact that Eeyore predicted a lapse even whilst he was still inder the influence of hormones.

H

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi there,

My reasoning that I would not lapse was based on the following article;
Hein Van Poppel, Lawrence Klotz, Gonatrophin- releasing hormone: An update review of the antagonists versus agonists International Journal of Urology 2012 19 594-601
https://onlinelibrary.wiley.com/doi/epdf/10.1111/j.1442-2042.2012.02997.x

Best wishes,

Georges

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi Everybody,

So here I am the day after the great rendevous with Tigger, we had  a case review and agreed on the following;

Neither the MRI, CT scan or Tc scintillography showed any sign of metastases
The biopsy showed no sign of cribriform
The post prostatectomy examination showed no sign of nervous invasion but there was extra capsular extensions and invasion of the seminal vesicles
My PSA fell remarkably post operatively from > 144 to 2.07
It fell by up to 83% in around twelve days after the first Firmagon injection giving me a PSA half life of less than 0.1 months

We agreed that the remaining postoperative cancer may well have been in the prostatic fossa but there is no way of knowing.

Tigger then said that maybe it would be a good idea to go for two years, I told him that I was not happy with this and that I wanted to stick with the eighteen month plan.
We agreed on eighteen months if my PSA is zero at the end of Sptember.
I told him that if my PSA was not zero at the end of September considering that I would still be on degarelix then I would be in deep trouble and he agreed with this.
So I will have to have a think about this eighteen months, maybe twenty one months, that would be eighteen months with non detectable PSA, or maybe two years?
The longer I stay on degarelix, the less likely I will recover testosterone, etc and some normality, but maybe an extra few months will make a difference to the cancer or maybe not?
These questions are essentially unanswerable but I have six months to think about them.
Anyway I am feeling fit and well so I have a programme of walking, gardening, French improvement, etc to get on with.
Circular letter to me and the doctors to look forward to next week.

Best wishes,

Georges

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi there,

Friday afternoon I went along for a general review of my case and a look at my general health with my medecin traitant. After some time we agreed on the following:

Irbesartan 300mg per day for the high blood pressure and its effect on suppressing prostate cancer supposedly through the RAA mechanism.
Amlodipine 10mg per day for the high blood pressure
Metformin two times 500mg per day for the blood sugar and the effect on suppressing prostate cancer through the mTOR pathway
Atorvastatin 20mg per day for the slightly elevated cholesterol.

So there we are, I am pretty pilled up, hopefully some of this will unwind when I stop the Firmagon!

Best wishes,

Georges

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi everybody,

I have updated my PSA timeline above, it is now a year on Firmagon with a zero PSA.
Time for this penguin to jump into the sea at the end of September or time to stay sitting on the ice floe?

Best wishes,

Georges

VascodaGama's picture
VascodaGama
Posts: 3032
Joined: Nov 2010

Georges,

I posted to you at another thread where you inform the result of the latest PSA of 0.05. I wrote this;

"It is awesome to have a PSA at less than 0.05 ng/ml. Let’s hope for continuous similar levels after the Firmagon. I think that your chemical castration is now at its 18 months mile stone. This is a long period so I recommend you to check the functionality of those organs that involve the production of hormones for our systems to work well. The typhoid and the Adrenal glands have been replacing the testis to certain extent. The liver, pancreas and the kidneys in particular could have been affected. Checking the creatinine at 24 hours and an ionogram is good to understand how far Firmagon has affected you, apart from the great benefit in controlling PCa.

ADT in my case assume some responsibility in the CKD case development. I detected its effects from the periodical test results (lipids, image studies and symptoms) I am doing since 2000. Diet influences much any situation."

Well, ADT it is not at the 18 months but even one year deserves a check on the affected systems.

Best,

VG 

 

 

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi Vasco,

I am off to see Dr Pooh in a couple of weeks, I will put creatinine, sodium, potassium and calcium on the laundry list for the blood analysis at the end of September.
She is pretty obliging and will agree to most things.
I have done fifteen months now, four more to go and I will pull the plug!

Best wishes,

Georges

PS: You gave me a laugh this morning, typhoid gland indeed, you mean the thyroid!

VascodaGama's picture
VascodaGama
Posts: 3032
Joined: Nov 2010

Georges, you are right. Your laugh is one of the 2,943 laughs as counted by CSN on my entries. I also laugh later when I go back and re-read my posts. What the hell did I wanted to say? .................

English is not my mother tongue and frequent errors occur if the "sounds like" seams OK. Well, ....... which biere de gardes do you like best?

I owe you one.

VG

 

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi Vasco,

We all need a laugh in this cold blooded business of watching PSA, etc.
All suggestions and comments gratefully received!

Best wishes,

Georges

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi everybody,

I went down the lab for the usual round of blood tests today; PSA for Tigger and then a laundry list that Pooh and I put together.
They are in dispute with the government so they are not working this afternoon so maybe I will get the results tonight on the internet or maybe tomorrow morning or whenever.
Off for a drive this afternoon, try not to think about it.

Best wishes,

Georges

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Cross fingers it will be a celebratory glass tomorrow

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi Hew,

Just raced the Mini up to Morlaix and back, hitting the Sport button at appropriate places and burning off the odd salesperson in a Clito or a Fart!
My results are good; PSA is still undetectable, I just have to persuade Tigger to let me off the leash now.
Blood pressure is 130/90, glucose, 1.18g/L, Hba1c 5.6%, cholesterol, 2.17 g/L, triglycerides 0.74 g/L
Pooh will be stunned.
Beer tonight and then steak and chips and wine.
I might manage a run over to Vitré mid month, hard to see how I could get up onto the peripherique where the legal speed limit is 140 kph and a lot go faster!
When are your results coming in?

Best wishes,

Georges

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

Congrats on not encountering Eyore in you adventures.....!

 

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Hiya

Congrats! Enjoy thst fluffy feeling of another milestone.

I test in a month. I am getting twitchy but mainly because work has been horrendously stressful and I have used alchohol as a a crutch and that sets off the little demons of doubt in my ear.

I hacve decided to go dry for as long as I cano now and press on regardless.

H

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi Max,

I have Tigger on the 3rd of October, Pooh sometime after to discuss things generally and then maybe Eeyore after Christmas.
We parted on bad tems last time after he told me that I would never be normal again.
I thought this was a statement of astounding stupidity. It is obvious that after a non nerve sparing prostatectomy, 66 Gys of radiation and 19 months of ADT I am never going to be anything like normal ever again.

Best wishes,

Georges

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi everybody,

That's it, I am off the leash for the moment.
My last injection of Firmagon was on the 30th of September, it has a half life of around 28 days so it should be down to fairly negligible levels by the new year.
So we will see what happens next.

Woohoo,

Georges

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Good luck my man

Steve1961
Posts: 250
Joined: Dec 2017

You Guys are scientists.  And seem to know more than a lot of doctors  And you mentioned there was no sign of cribiform . They mentioned on my biopsy that it was of cribiform .  Is why I think I am so screwed .I try hard to stay off this forum I have not been on it for about 10 days every time I come on it I read something that terrifies me. After reading this whole story I’m terrified if I have to go on ADT After reading all of the above it will probably kill me I will not be able to work I will be home all alone and I  won’t be able to sleep and hopefully I’ll just have a heart attack it’ll be over . I wonder if other people read this story and don’t make comments and get absolutely terrified like me I hope not but I bet they do . After coming to this forum and reading all these sad scared stories i think to myself there’s no way I can be cured but then again a lot of people are cured I wish I could just believe I’m going to be cured but it’s rough Now I have a restriction in my prostrate from the radiation and into weeks I get a colonoscopy will just see how much damage was done there it’s so hard for me to look on the bright side right now . Fella down the street 73 years old granted the prostrate cancer was worse than mine but he did the same procedure at the same hospital and now it has spread to his hips and he is on I guess some form of a DT but he doesn’t look into it doesn’t know anything about it just that he’s taken some bill that cost a lot of money. I see him every now and then and I try to avoid him that’s all he  wants to talk about obviously misery likes company and I know it’s awful for me to try to avoid him but it’s just so scary to me because him and quite a few other people told me why don’t you just take it out and I told him well there really isn’t a need for it they could do these other things I don’t know if I truly believed that or if I  was just too scared to do it but right now I wish to God  that I did have surgery because it’s not knowing is absolutely killing me I will admit it 

hewhositsoncushions
Posts: 279
Joined: Mar 2017

I hit the wall about cribriform myself a year or so ago and was told on my UK forum I had it wrong.

Cribriform is a diagnostic marker used to upgrade a 3 to a 4. I may well have been 3+3 otherwise.

Is the local expert said on my forum it was caight at diagnosis, I had radical treatment, it is now in a bucket and my numbersa are good.

I do not think it is worse than that.

They generally tell you outright if you have a serious variant (e.g. small cell) and what risks that entail.

You too had treatment with curative intent. Have faith. Relax a bit.

Steve1961
Posts: 250
Joined: Dec 2017

 It’s tough to have faith when you think you’re being lied to. This surgeon now is saying that I had simple cribriform. Not invasive cribriform. Everything I read just talks about cribriform and how it’s almost  certain that it always spreads. All it talks about his crib form nothing about simple or invasive this is why I think they’re just trying to pacify me because they know I have major anxiety over this 

hewhositsoncushions
Posts: 279
Joined: Mar 2017

It is a diagnostic marker to upgrade 3 elements to 4. That's the nun of most research.

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi there,

There is a correlation between Gleason Score and aggression of the cancer.
6's almost never metastase, they may grow to fill the gland completely and invade other areas close by but that is about it.
As you move up through 7a, 7b,8, 9,10, they do become increasingly adventurous with a 9 or 10 being the worst.
It is possible to have a gland contained 9 or 10 that will have a below the limit of detection PSA after prostatectomy only to find a nasty surprise a few years later.
Cribriform is a negative marker but it is not the boss by any means.
One day urologists will abandon Gleason scoring in favour of genetic analysis of each cancer that will then form the basis for the treatment.

Best wishes,

Georges

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi there,

I avoid talking about my prognosis with anyone now.
I tell them I am in remission, this is true as I have a PSA of less than the limit of detection or zero if you like and I have no symptoms.
No details of the treatment I have undergone, the PSA results, the discussions with Tigger and Eeyore on possible outcomes.
Most of them cannot understand what I have been through both mentally and physically or what may happen in the future.
My focus now is on enjoying my life with my wife as far as possible and wait to see what the long term future may bring.
We have lots to do! :-)

Best wishes,

Georges

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi Steve,

You have to bear in mind that I am a very extreme and unusual case.
I had a massive PSA but almost all of the tumour was concentrated in the prostate gland so when that was cut out my PSA fell dramatically.
95% of men with a PSA like mine will have a large network of metastases in place but I was negative on the Technetium bone scan, MRI and CT scan.
The bone scan doctor told me after the scan that she expected me to light up like a Christmas tree.
This does not mean that I do not have metastases, maybe I do but they are too small to see.
Or maybe as Tigger thinks is possible I have a few hot spots in my pelvis, maybe in the prostate bed or close by.
You do have to remember that this is cancer treatment.
Some of us have had a rough journey, some may find a surprise popping out of the woodwrk years later; but unlike people who go through the worst of chemotherapy I still have all my hair, finger and toe nails, I feel pretty good most days and I hope things will get better.

Best wishes,

Georges

Georges Calvez
Posts: 297
Joined: Sep 2018

Hi there,

I have just had my rendevous with Pooh, we have agreed that my results were excellent and we will continue with the current drug regime of amlodipine, irbesartan, metformin and avorstatin for the next three months.
Blood test and chat with Pooh around Christmas, early January, no doctors until then, barring emergencies!

Yippee Ki Yay,

Georges

Subscribe to Comments for "Prostatectomy + RT + ADT"