"I had a radical open prostatectomy"

Hello @Benoit54000, you accepted to share your story with us on Carenity and we thank you for it.

Thank you for giving me the floor, I wish to help those who are lost and who are looking for answers to their questions, there are no taboo subjects!

First of all, could you tell us more about yourself?

I was born on December 21, 1965, so I will soon be 55 years old. I'm currently working in sales in the greeting card industry, have been married for 25 years to a wonderful wife and am father to 2 sons aged 20 and 22. I love photography (I was a photographer for 10 years), antiques, flea markets and my Citroën 2CV.

Photo courtesy of @Benoit54000

What prompted you to seek care for prostate cancer? How long did it take you to get a diagnosis? What tests did you have to undergo?

I was already being seen by a doctor because my father had had prostate cancer and had been treated with radiation (he died in March 2018 from reasons unrelated to his prostate). For me, following a urinary tract infection and a high PSA level, the urologist, after a rectal examination, ordered (a little late, I think now in hindsight) additional tests, an MRI, a biopsy, scintigraphy... The tests followed one after the other very quickly:

• January 2014: normal prostate (getting once a night to urinate since the previous year) 
• November 2015: no areas of concern
• September 2016: urinary tract infection, PSA at 16.8
• October 2017: MRI (with a next proposed check-up in 6 months' time)
• March 2018: left lobe biopsy positive (2/7), Gleason score 6 (3+3), right lobe biopsy positive (1/8), Gleason score 6 (3+3)
• April 2018: normal scintigraphy!
• May 2018: prostatectomy decided following discussion with oncology team
• January 2019: open radical prostatectomy in Nantes by Dr. Chauveau

How were you informed of your diagnosis? How did you react? What was your state of mind at the time?

I admit that a little more diplomacy on the part of the urologist would have been welcome. 
During the appointment with the urologist, all solutions were exhausted: it was impossible to do radiation, impossible to do brachytherapy, so the oncology team on my case decided to opt for a prostatectomy! At 53, I was 20 years ahead of the average person affected, and I was lost in the face of this wave of "impossibilities"! 
I was going to be completely consumed by my diagnosis. CANCER is a scary word. Questions started hitting me like a tidal wave.
With my family health history, I would have like to have been monitored more closely, in terms of more regular appointments.

At this point in my mind, it was already too late...

A dubious parallel was made by the urologist when he told me that it was fate, and that I could have been run over while crossing the street... A parallel that I found to be unneeded given the situation.

How I reacted: faced with my urologist and faced with this brusqueness, faced with overwhelming emotions, faced with lack of confidence, faced with a lack of empathy during the biopsy... I decided to get a second opinion from another urologist in the same practice, then a third opinion at the Nancy University Hospital. 

While we were hoping for another outcome, unfortunately the other opinions were in agreement.
There seemed to be no way around it - prostatectomy was advised in light of the of the biopsy results. 
Another urologist suggested a period of active surveillance and watchful waiting, but there were many constraints (regular biopsies) for a result that could only be put off for a few months or a few years at most.

My state of mind: there wasn't a moment when my brain wasn't chattering to me about cancer, it was constant! It wasn't fear of cancer (I think), but of the unknown... you are alone in the world and have to look for information.

Could you tell us about your care and care pathway? What did you think about the medical team supporting you? Did you have all the necessary information? Did you feel comfortable asking your questions?

After my appointments with the urologists of the Nancy area, I found the name of Dr. Barre on the internet, who, after his retirement from the Jules Verne clinic in Nantes, continued his surgeries but in Belgium! I liked his technique and his results, his explanations and his availability by telephone were comforting. He performed open surgery, unlike the majority of people who use robot assistance. He had developed specific tools for the operation. His goal was to help patients maintain a "normal" life post-surgery!

I was convinced by his method and I met him. An atypical but reassuring character! He was the one I wanted for my surgery. Unfortunately, the operation in Belgium had to be paid for in advance because it was not covered by the French social security system... I tried to apply for coverage but the social security system justified its refusal because "there are enough surgeons in France".
So I had to pay around 10,000 euros and take risky steps to be reimbursed. It was risky, and above all it was not possible for me to advance this sum.

I was really disappointed because by then I had found the ideal surgeon!

I had to start all over again and, at that moment, I told myself that "out of spite" I was probably going to go ahead with the robot-assisted operation in Nancy and be operated on by my urologist because the lead I was hoping for was going up in smoke. 

Then I started my search once again, I didn't want to admit defeat and I contacted the clinic where Dr. Barre had previously worked, and I discovered that some of his former colleagues were doing the same type of procedure with the same techniques! The appointment was therefore made with Dr. Chauveau who worked previously and in parallel with Dr. Barre. 
Yes, I had to cross France from Nancy in the northeast to Nantes in the west near the Atlantic coast, but when you want the best for your body, you'd go anywhere! 

After 24 hours of reflection, my decision was made and we set the surgery date for January 14, 2019.

It should be noted that I was always supported by my wife during the appointments and we always discussed the different solutions available to me.

You underwent a radical prostatectomy. Why was this treatment chosen? How did you react to the decision? Did you have any doubts, fears or anxieties?

To quote the urologist's letter, "brachytherapy was not an option given the urinary flow rate below 15mL/s, and as far as radiation was concerned it was not the best indication given my age..." It was therefore necessary to proceed with the prostatectomy. 

Doubts, misgivings, fears, it was a mess! After reading a lot about the subject, I had a lot of questions in my head: how would I go about having a normal sex life? Would I have bladder leakage? Would I still have erections? Could the operation go wrong?

How was the surgery carried out? Was it painful when you woke up? How was your recovery? 

The operation went well, I stayed for a short week at the clinic in Nantes, it was one of the biggest operations I had ever undergone in my life, and I can't say that I suffered. 

On Monday morning I was operated on and I was back on the train on Friday of the same week to go home. 

Open surgery is more invasive and may require a bit more recovery time, but the pros and cons have to be weighed.

I was off work from January 14^th to February 24^th, 2019 but I was given an extension until March 10^th, 2019 because I didn't feel comfortable going back to work yet (mainly because of bladder leakage).

Did you have to do any rehabilitation? Could you tell us about it?

Not at the beginning, but when I was incontinent, I was prescribed sessions. The nurse had asked me to "weigh" the pads, as I was between 90 and 170 grams without really improving, I started perineal rehabilitation at the beginning of March 2019 (without a catheter). 

The results were noticeable very quickly. 2 months later I switched to medium pads, and 3 months later to the simplest ones.    

This period was undoubtedly the most difficult because you have no control over anything! You have to do the exercises at home between each appointment with the physiotherapist. For me it was perineal rehabilitation with biofeedback.

What consequences has the prostatectomy had on your body and mind? What impact has it had on your daily life and your sex life?

The fact that I "removed" the cancerous part of my body freed my mind! I no longer thought about it daily, it was true freedom!

In my daily life, not much to say; in my sexual life, you have to do things differently, talk about the situation and adapt the way you have sex. We now have to plan little "dates" now for making love with the help of medication rather than doing it spontaneously because the effect is limited... It took me about a year to be able to penetrate naturally.

But don't worry, the little blue pills (like Tadalafil), work well and allow you to have erections as before!

Were you give any advice about post-surgery? Have you received adequate information further follow-up?

Despite the distance, Dr. Chauveau was always present during my calls to answer questions. I go back for check-ups about every 6 months and the clinic sends me the necessary blood tests and other medical documents.

What would you like to say to people about to have their prostate removed? 

There are those who will trust and listen to their doctors and have a successful operation! 

In most cases, the procedure is done with a robot, but at 70 years old sexual needs are different. At 53 years old, I really investigated the question because I didn't want to live with a disability. 

I chose the open surgery because it suited me better, I was more confident, but I imagine that a robot-assisted operation would have given good results too.

You have to follow your instincts, you have to be confident about the operation ahead of you and above all be confident in your surgeon.

Are you currently in remission? What is your state of mind now?

I think they say you're in remission at 5 years, so for the time being I'm not, but all the tests are good and I'm very confident that I'll be in remission almost 2 years from the time of the surgery.

I live pretty normally, just a few small leaks still today but nothing too bad.

I wouldn't say it's an ancient memory but I find that, unlike some cases, I'm lucky to have had an operation that went well and that hasn't shown any signs of more serious consequences.

I'm not on any treatments, it's just like before

Are you supported by your family and friends? Are you comfortable talking about prostate cancer with them?

I am discreet by nature and do not talk about my cancer with family or friends, just the bare minimum.

However, before the operation, I had the chance to talk to other people who had undergone the procedure and it's really important to be able to talk freely. 

The people I contacted were reassuring, didn't try to hide anything and were totally transparent with clear, direct and open communication.

I needed it, that's why I, in turn, would like to express myself and explain to those who need it, before or after the operation.

I've found it difficult to get information from the doctor or urologist, not that they don't want to give it, but I think they haven't been through it, so they don't know how to give it!

Finally, what advice would you like to share with other Carenity members living with prostate cancer?

I too found information and testimonials on Carenity before my operation because I had a lot of questions.

If you're also asking yourself questions, which is normal and justified, even if all operations are different, if we are all different, if our cancers are in different stages, if our bodies react differently, if the after-effects will be different from one being to another... Have the operation when you're in the right frame of mind. It will only help your body to recover better.

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Take care!