ITW n°8: Jean-Luc K fighter.
First of all, thank you so much for agreeing to share your K's story, it's really courageous and generous of you :)
You are the 2nd K fighteu R who shares his story! A huge THANK YOU & Bravo!
Let's get started:
Who are you ?
First name: Jean-Luc
Age: 51 years old
Profession: Insurance Analyst Consultant
Where do you live: In Picardy 70 km from Paris
March 2009: Prostatic adenocarcinoma with a Gleason score of 8 (4+4) on 2 of the 3 samples, High Grade Aggressive.
Tell us about your journey as a K fighter:
Gradually in 2007, 2008 Nocturnal urinary frequency sets in (frequent urge to urinate at night) I was 43 years old, I spoke about it to my GP, STRESS verdict, Single dad with 5 children, liberal profession, normal I am stressed so I piss (What Else), after insisting for several months, my doctor prescribed a PSA blood test, complaining “your stress!!!” , first dosage October 2007 PSA 6.07 , 3 times the norm, although at 43 years old there is not really a norm.
Concern from my doctor, who sends me to the urologist at the Clinique du Coin (the only one in Beauvais)
Rectal examination without asking me if I agree, verdict you have nothing, just, certainly, perhaps, obviously prostatitis because cancer at your age is not possible.
Ah reassured I take my treatment of Three antibiotics for 3 months new check January 2008 PSA 6.40 it's a big infection (without fever, without pain, but with enormous fatigue) come on courage we're going back for 3 more antibiotics for 6 month and a pelvic ultrasound, normal prostate estimated at 20 grams showing a homogeneous prostate...
So I was the only one to worry but as I didn't want to worry my children, I minimized everything and thought alone in the evening and at night. Yes, despite the antibiotics I put on, I still get up 5 to 8 times a day. night to urinate, with sleep chopped menu-menu.
For my part, I am having an MRI prescribed by a doctor friend, I think that we will see better, and that I could help the doctors to see more clearly (conclusion of MRI Cystic formation of 12 mm of left para-uretal height , hyposignal zone in the same place)
June 2008 PSA 7.11 new visit to the urologist, I make out of my concerns, I do like him I move away from cancer, that suits me well “YOU DON'T HAVE CANCER”, he wants to be reassuring , finally he reassures himself because I'm chattering my teeth, I hand him my envelope with the MRI in it, he says to me “but I didn't prescribe an MRI for you, it's no use (little joke about the health expenses, patients who think they are smarter than doctors, 10 years of study, tatatatata...)
And bam he gives me the envelope again without opening it, I don't look at an exam that I didn't prescribe...
Annoyed, I in turn hand him my credit card and my bank card, CASH, turn heels and hop out.
Holiday 2008, I have nothing, just a PSA which goes up, up, a bit like the sea, and one day it will go down, and Yes is my little name it's the Atlantic...
October 2008 PSA 8.02, misunderstood by the medical world, my mind is shaken by “I have something serious, but no since no one panics, you just have a PSA which rises for no reason, a false positive, I read on certain doctors' sites against prostate cancer screening (tout.org) very reassuring elements, basically there is nothing serious about having a few cancer cells in the prostate, we do not treat it, we do not die from it , and especially the treatments are often WORSE than GOOD.
January 2009 my Physiotherapist, a friend, asks me where I am with my PSA, I summarize, I have nothing... he offers me: “And if I give you an address in Paris, would that interest you?”
Me: “Yes” (shy), with the fear of hearing myself say that I'm just an anxious person, finally by a stroke of luck I have a quick appointment, thanks to a withdrawal, in February 2009 PSA 8.92 with Prof. Olivier CUSSENOT at TENON hospital
“You have an MRI, perfect, I'm looking..” he laughs who prescribed it, the images have been with me for 1 YEAR, after examining the MRI,
He asks me if he can examine me, the first one asks me to search my private parts, then he explains to me “there you go, I would like to take 2 or 3 samples, there is something on the MRI that I feel in you. (?)
Biopsies done in early March 2009: conclusion Prostatic adenocarcinoma with Gleason score of 8 (4+4) on 2 of the 3 samples, High Grade Aggressive.
Announcement is almost made before the consultation, because I see the professor passing in the corridor with a book under his arm “Prostate Cancer” and I know that the next appointment is me.
I enter his office, I already have no more sound, no light and images, I hear in the background that I have cancer, that it's serious, that it's aggressive (naughty), that 'we mustn't hang around (I want to become a serial killer, Dexter Jean-Luc who cuts my treating (or mistreating) doctor into slices, the urologist from Beauvais, fury, rage, but dejected, I just took , a plane in my tower, Fortunately for the return my brother is there, he takes me home, I go to bed, under my duvet, before going to pick up my children from school...
I cry, Alone.
I tell my children that my prostate will have to be removed, but it doesn't matter, just a matter of a few days, Dad is strong, I reassure everyone...
In the evening I send an email to Prof Cussenot, “Am I going to die? , I need to know, what will become of my children? “
Very kindly, taking his time, he replied me a long email explaining everything, risks, luck, treatment, operation, location of operation...
I decided to have an operation at the Mutualise Montsouris institute, by Professor Xavier Cathelineau with Da Vinci robotic assistance at the beginning of MAY 2009 18 MONTHS LOST
I am informed of the possible consequences of the operation, IRREVOCABLE sterility, incontinence and erectile dysfunction.
The operation goes well, extra staff, doctor, nurse, room staff and psychologist, all extraordinary, I became a little thing 14 kgs less, a rag doll for 48 hours, after that I go back up, I get used to it with the urinary catheter, I do everything to be presentable my children will come to see me, I'm joking, I'm minimizing, the El Papito what...:)
I'm slowly recovering after 2 months at home, incontinence, impotence... I'm someone else, I don't know who yet.
Unfortunately it is not over, I recur 3 months after July 2009 the PSA is at 1.09 whereas it should no longer be there since no more prostate.
And then the results of the ana-Path are not encouraging it is not a Gleason 8 but 9, therefore a very high grade cancer with poor prognosis, the cancer had come out of the left base of the prostate and the gallbladder left seminal, I remember that on MRI of January 2008 the vesicles were intact.
So it’s even more serious than I thought… so I’m not through yet
It was decided to move on to double-blocking hormone therapy and radiotherapy for 38 sessions, 4 months, arriving in December 2009.
Double blocking Hormone therapy (casodex and Enantone) was stopped in December 2014, to continue currently with Hormone therapy (casodex and Avodart and Tamoxifen) a little less toxic for my faith and for…. 1, 2, 3, 4, 5 years, we'll see.
Since December 2009 my PSA has been at 0.03, therefore undetectable.
We know that this type of Gleason grade 9 is more recurrent and aggressive, so nothing is left to chance, and protection is maximum.
With this adventure, in Cancerland I changed Attending Doctor, a good guy, humble, attentive to the family, not my “grocer” from before.
What did you do to clear your mind/clear your head (before chemo, surgery & co)?
Before my radiotherapy sessions, I listened to a sophrology session made by a friend especially for me, it makes me feel good, to gain some distance from this enormous machine, and the pain and burns that are starting to come.
For burns Cold Cream, Biafine for prevention and curative.
For protections Tena makes fairly safe protections for men Level 1, 2, 3, cheaper in supermarkets (the cheapest Hyper U).
What practical tips can you advise us?
- Japanese Sencha green tea, after radiotherapy I could no longer tolerate coffee, which I love.
- A lot of fish
- walks with my dogs
- a little physical activity.
Moisturize my skin, my eyes, anti-hormonal treatments dry out the skin and mucous membranes (Lacrifluid for the eyes, it is reimbursed SS for example)
What are the nugget phrases that someone said to you during K that could have been avoided?
"Prostate cancer is a small cancer, we don't die from it (9,000 deaths per year in France), but it's a cancer of old people, ultimately after 5 years it's automatic we are cured",
I'm just a K warrior, a Jedi from the Trilogy: Operation - Radiotherapy - Hormonal therapy.
Even doctors look at the K of the prostate as a minimal K, which does not even deserve screening, but just if there was no screening I would not be here writing, I would be... certainly , dead.
It hurts me when in TV shows, we make fun of, or laugh about, the prostate, or when we always associate this type of organ and K with old age....
How did your loved ones support you?
And what advice could you give to loved ones who accompany a K fighter?
My daughters are very present around me.
My son left the “boat” a few months after the announcement of the recurrence.
My brother was very present during the intense moments of the care, he takes more distance now, it's normal, the long short “tires” those around him, and he sees us, or rather wants to see us as “cured”
What would be the useful (internet) links that helped you during K?
What has the K changed in your life...?
The passion of my children, I am a dad fully.
With hormone therapy, work “is complicated”...
Creation of an association and a site www.cancer-la-vie.com to provide assistance in the search for insurance that does not exclude cancer risk (loan insurance, travel insurance, leisure). Active on various web media.
Creation of the cinema blog www.cinema.cannes.cancer.over-blog.com. Because the Disease does not prevent culture, blog which “campaigns” for our acceptance in major festivals like that of CANNES for recognition of our often invisible but very real “handicap”.
It is very difficult for me to plan, to envisage a meeting, the physical damage is significant, I am not really working again.
Supportive care is a hoax in the provinces, except perhaps for breast cancer, nothing free, the deadlines for a psychologist are 3 to 4 months, 2 psychologists for the entire 600-bed hospital, In order to be properly psychologically supported, I am obliged to pay a psychologist (cost €60/session) I have reduced it to 2 sessions per month, 4 would be better.
In the context of Prostate Cancer, we have for the most part, for functional rehabilitation of medications such as Viagra, Cialis, or Levitra, you should know that for us patients, or former patients of prostate cancer, we practice “the “priced love”, a tablet costs on average 10 to 15 € and is not reimbursed by social security or mutual insurance, if this rehabilitation is not done, the damage to erectile function is catastrophic and irreversible, a scandal more, but men are silent, for fear of appearing impotent and yet, this is not the case, we are “just” assisted by medication.
Fortunately I live beautiful love stories through cinematic proxies/self-taught cinephile, I enrich myself with magnificent works, and I share my sessions with My Daughter Anne-Lise, my youngest 16 year old true cinephile and Hollywood Series-killer .
Why did you agree to share your story today?
Because too many men are silent.
Because many men ask their wives to speak for them.
My final advice: Two medical opinions minimum, get closer to cutting-edge teams, patient networks (patient-expert), GET INFORMED, BE AN ACTOR IN YOUR CARE.
It was a pleasure to respond to your ITW.
Thank you again for your testimony and for sharing your K/tips ;)
Lots of sweet positive thoughts
See you soonCharlotte<:en> Hello Jean Luc,
First of all thank you heaps for accepting to share the history of your K, that's very brave and generous of you
(I don't want to look tactless, so feel free to answer to the questions you want to, this is a “standard” form so you can skip whatever question and add those elements you think may be important if you consider I forgot something you wish to talk about…)
Who are you?
Job: Insurance Analyst Consultant
Where do you live? In Picardy, 70 km from Paris
Since 2007 and 2008 I've been slowly suffering from night urinary frequency (frequent needs to urinate at night); I was 43 at that time, so I consult my GP who diagnoses me with STRESS: single father with 5 kids, self-employed, quite understandably I am stressed and that's why I pee that frequently (What Else), after a few months of insisting me, than my GP prescribes a blood test to check the PSA - but turning up his nose saying “that's stress!!!”, first test in October 2007 : PSA 6.07, 3 times higher than normal, and that is pretty unusual at 43.
My GP than gets worried and refers me to a urologist at the Clinique du Coin (the only one in Beauvais).
Rectal examination without even bothering asking my permission and the verdict is: everything's OK, well, no doubt, maybe, clearly a prostatitis 'cause “cancer at your age, it's impossible”.
Ah, I am relieved! I start with 3 antibiotics for 3 months, then another check in January 2008 : PSA 6.40, that means a big infection (no fever, no pain, just extreme fatigue); so, here we go again, another cycle of 3 different antibiotics for 6 months and a pelvic ultrasound showing a normal and homogeneous prostate estimated to weigh 20 g...
At that point I am the only one still worried, but since I don't want to afflict my kids I play it down and brood over it each night, but in spite of all the antibiotics I gulp down I still have to wake up 5 to 8 times per night to pee, without a proper sleep… that was my life.
I then ask a doctor friend for an MRI, I thought that could help doctors understanding
(verdict: 12 mm cystic formation at the left paraurethral gland and hyposignal in the same area)
June 2008: PSA 7.11, another visit with the urologist, I share my worries, I act like he did and try and pretend I don't think it's cancer, I feel fine with him saying “YOU DON'T HAVE CANCER”, he looks encouraging and finally gets pretty confident, but then I grimace and hand him over the envelope with the MRI results and he says “I didn't prescribe you a MRI, that's pointless (brief rigmarole over health expenditure, patients thinking they're smarter than their doctors, 10 years of study, blah blah blah...)
And… he hands me the envelope back without even opening it, he doesn't even check the exams he prescribed me…
I am pissed off. I give him my insurance card and my credit card, he CASHES IN, and I turn on my heels and rush away.
2008 vacations, nothing's wrong except for the PSA values acting like a tide: one day up, the other down... and yes, my nickname was then Atlantic ocean…
October 2008: PSA 8.02 , inexplicable for the medical world, I am totally freaking out, going from “I know this is serious” to “no one else is panicking, it's just the PSA values increasing for no reason, it's a false positive” . I read on some websites (atout.org) few reassuring things about the prostate cancer screening, basically it's no worries having few cancer cells in your prostate, no treatment but you won't die for it and, most important, getting treated is often WORSE rather than BETTER.
In January 2009, my physiotherapist, a friend of mine, asked me about my PSA. I recap all for him: they found nothing wrong… he then suggested to me “What if I give you a contact in Paris, would you be interested?”
I say Yes (shy), I don't want to look anxious; eventually I'm lucky and thanks to a cancellation I get an appointment rapidly ( it's February 2009: PSA 8.92 ) with Prof. Olivier CUSSENOT at the TENON hospital.
“You have a MRI, good, let me have a look” he doesn't care about who prescribed it, I've been having those exams since 1 year! After checking the MRI he asks my approval for an examination (well, he was the first one asking my permission to inspect my bits) then he says “Well, I'd like to take 2 or 3 samples as there's something in the MRI I feel in you”. (?)
Biopsies in early March 2009: the verdict is Prostatic Adenocarcinoma Gleason score 8 (4+4) in 2 out of 3 samples, High-Grade.
The verdict is almost final even before the consultation, as I see the professor walking in the corridor carrying under his arm a book titled “Prostate cancer” and I know that his following appointment is with me.
I get into his office, I am barely aware of sounds, lights and images, I only understand that I have a cancer, that it's serious, aggressive (dreadful), that we shouldn't linger (I want to be a serial killer, Dexter Jean-Luc, and butcher my GP, the urologist in Beauvais, anger, rage, but feeling miserable I take my flight back home; luckily my brother is there, he drives me home, I go straight to bed under the duvet before going picking up the kids after school…
I cry, alone.
I inform my kids that I will get my prostate removed, but it's not serious, just a couple of days, Dad is strong, and I reassure them all…
That very night I send an email to Prof. Cussenot, “Am I going to die? I need to know, what would my kids do?”
The Professor takes his time and he kindly replies with a long email, explaining everything: chances, treatment, surgery, clinics...
I decide to get my surgery done at the Mutualise Montsouris Institute, by Professor Xavier Cathelineau with robotic surgical assistant Da Vinci at the beginning of MAY 2009: 18 MONTHS THROWN TO THE WINDS
I'm informed with the possible consequences of the surgery: IRREVOCABLE sterility, incontinence and erectile dysfunction.
The surgery goes well, supporting staff, doctors, nurses, OR staff and psychologist, everyone is amazing, as for me I'm now a tiny man who lost 14 kilos, a ragdoll in less than 48h, then I recover, I get used to the urinary catheter, I try my best to make me presentable to my kids visiting me, I make jokes, I play it down, I am El Papito …:)
I slowly recover after 2 months at home, incontinence, impotence… I am a different person, but I do not know who, yet.
Unfortunately it's not over: relapse after 3 months as in July 2009 my PSA is 1.09, while it should be zero as I do not have a prostate.
The ana-Path results are not good, too: it wasn't Gleason 8 but 9, which is a very high-grade cancer with poor prognosis, the cancer affected also the left side of the basis of the prostate and the left seminal vesicle , I remember that in the MRI dating January 2008 the vesicles were untouched.
So, it's even worse than I thought… So, I'm not done with it yet.
We decide to pass to the Dual Blockade Hormonal therapy and to radiotherapy - 38 sessions, 4 months, and it's now December 2009.
We interrupt the Dual Blockade Hormonal therapy (Casodex and Enantone) in December 2014 to start with the Hormonal therapy I'm currently under (Casodex, Avodart and Tamoxifen) slightly less toxic for my liver and for the next…. 1, 2, 3, 4, 5 years, we'll see.
Since December 2009 my PSA has been 0.03, that is undetectable.
I know that this type of Gleason 9 is more relapsing and aggressive, so nothing is now left to chance and protection is at its highest.
After this adventure in Cancerland I changed my GP, now he's a good guy, humble, he listens to families, not as the “narrow-minded” I had before.
What did you do to take your mind off / clear your mind (before chemo sessions, surgeries & co)?
Before my radiotherapy treatments, I used to listen to some sophrology sessions that a friend of mine did specially for me. That did me good and helped me put some distance between me and that huge machine, the pain and the burns which I started to suffer from.
For the burns Cold Cream, Biafine as a preventive measure as well as a remedy.
For protection purposes, Tena makes quite reliable protections for men Level 1, 2, 3, they're cheaper in supermarkets (best price at Hyper U).
Is there any practical tip you can advise us?
Food: Japanese Sencha green tea, after radiotherapy I couldn't stand coffee and yet I love it.
A lot of fish, some walks with my dogs, some physical exercise.
Moisturizing my skin, my eyes; anti-hormone therapies dry out your skin and mucous membranes (Lacrifluid for your eyes, refunded by NHS)
Has anyone ever told you any tactless blunder during your K that could have been avoided?
Prostate cancer is a small one, people don't die for it (9000 deaths per year in France), but it only affects old people. At last, 5 years later you finally get over it, I'm just a K warrior, a Jedi of the Trilogy: Surgery - Radiotherapy – Hormone therapy.
Even doctors consider prostate K a negligible one, a K which is not even worth a screening, but without a screening I wouldn't be here writing my story, I would certainly be dead.
I feel upset when I see people on TV making fun, making jokes with the prostate or associating, as they always do, this organ and its K to aging.
How did your loved ones support you?
Is there any piece of advice you would share with the family members of a K fighter?
My daughters are very much there for me; my son just went off a few months after I was told about relapse; my brother was there for me during the hardest periods of treatment, now he's taken some distance, which is normal. Your family and friends “get tired” on the long term, and they see us, or rather want to see us, “completely recovered”.
Is there any useful website that helped you out during your K?
Did K change your life…?
The passion for my kids , I'm totally engaged in my role of father.
With hormone therapy, “it’s very hard” at work…
Establishment of an association and a website ( www.cancer-la-vie.com ) to help people in their search for insurances that don't exclude cancer risk (loan insurance, travel insurance, leisure insurance, etc.), active on many web media.
Establishment of a movie blog ( www.cinema.cannes.cancer.over-blog.com ), because the desease doesn't prevent people loving culture, a blog “campaigning for” the acknowledgment of our “handicap” - which is often invisible but still real - in the biggest festivals, like CANNES.
It's very difficult for me to make plans, to consider dating someone. Physical consequences are important. I returned to work, but I'm not 100%.
Cancer programs in small towns are just a farce, with the only exception of breast cancer maybe: nothing is free, it takes 3/4 months to get an appointment with a psychologist, just 2 shrinks for a 600-bed hospital, to receive psychological support I have to pay a consultant (60 €/session), this is why I'm just going twice a month at the moment, although 4 times would be much better.
In the case of prostate cancer, for functional rehabilitation, we basically have medications such as Viagra, Cialis, or Levitra. But we who suffer, or suffered from prostate cancer, we have to “buy love”. A pill is about 10-15 € and it's not refunded by NHS nor mutual funds. If you don't do rehab, you will get disastrous, irreversible consequences on your erectile function, and this is even more outrageous, but men don't say a word about it, fearing that they will be considered impotent, but this is not the case, we are “just” receiving medication therapies.
Thank goodness I live beautiful love stories vicariously through movies. I'm a self-taught movie fan, I feel enriched by outstanding works, which I watch with Anne-Lise, my 16-year old youngest daughter. She's a true movie-fan and Hollywood-style serial-killer.
It was a pleasure to answer your ITW.
Thanks again for your testimony and for sharing your K/tips ;)
See you soon