Prostate cancer: "Psychological care after a prostatectomy is non-existant!"

Hello @Jeanlada, you agreed to share your story with us on Carenity, and we thank you for it!

First, could you tell us a little about yourself?

My name is Jean-Marie, I was born on 31 October, 1953. I used to work as a social engineer in a bank, but I retired in March 2016. I am married and have two twin children who are 30 years old. I am passionate about history, economics and DIY.

You have prostate cancer. Could you tell us more about the diagnosis? Why did you go see a doctor for your prostate cancer? Which tests were done to diagnose it? 

I had a massive heart attack on July 16, 2016. During a routine cholesterol check-up after the attack, my GP suggested I get a PSA (prostate-specific antigen) test. He called me the next day to tell me my results were a little abnormal (5.05 instead of 4). A second test confirmed the initial results.

My GP referred me to an urologist Châteauroux where I live and told me not to worry. The urologist then prescribed a biopsy.

The results were positive: 6 samples out of 18 were cancerous. I clearly felt that the urologist was embarrassed, and he told me "yes, you have a rather aggressive cancer". He also prescribed a bone scintigraphy* (bone scan) to check that the cancer had not yet spread to my bones.

Negative result: phew! The cancer was limited to the prostate. The urologist asked me what I wanted to do and I told him I wanted a second opinion. He spontaneously phoned his former professor in Tours nearby and I had an appointment with him two days later.

The second doctor very coldly and distantly confirmed the diagnosis: "You must have any operation, otherwise the cancer will metastasize in a year's time".

As for how I felt about the whole thing, I felt like my world had ended. Like most people do, I read everything I could on the subject and what I was most afraid of were the consequences the operation would have on erections.

*Bone scintigraphy is a nuclear medicine imaging technique of the bones. It produces a functional image through the administration of a radiopharmaceutical drug whose radiation is detected once it has been picked up by the body or the target to be examined.

What was your care like after the diagnosis? What was your treatment plan? Can you tell us about the support you got from the medical team during your treatment?

I chose to undergo surgery in a Tours, with the da Vinci robot-assisted process. The professor had made it clear to me that I would be incontinent for a few weeks and that I might have trouble getting or maintaining an erection. For me this was my obsessive fear.

I underwent surgery on 6 March, 2018: after the surgery, a junior doctor came to see me as I woke up to tell me that everything had gone well.It all went downhill very quickly, however: 5 minutes after the junior doctor's visit, I felt pain in my left arm and was directed to the cardiology unit!

Diagnosis: a massive post-operative infarction. I was then transferred to another hospital specialized in cardiology. This was the start of my care in the ICU. On the third day, I had a hemorrhage in my pelvis, following the reintroduction of anticoagulants.

At that time I also learned of my mother's death during a pelvic ultrasound. The professor came to see me specially and I am very grateful to him that he came to speak to me in person. I then had to start cardiac rehabilitation, with which I was already familiar.

Sometime later I had a new appointment with the professor to assess and review the prostatectomy and to give me an injection of edex*. The four following hours were very painful. I was disappointed, I felt abandoned.

So I booked an appointment with a sexologist, who was compassionate but of no help. The problem is mechanical, because the erector nerves have been teared away... She therefore cannot help me.

*This medicine (alprostadil) contains a substance from the prostaglandin family. Injected into the penis, it provokes an erection after 5 to 10 minutes.

Before the prostatectomy, did anyone explain what the side effects of the surgery would be? Did you receive all the information you needed about the various possible postoperative care options?

Objectively yes, but it felt mostly like a physics lesson! It is so very important to have proper psychological support and I would have liked to have been able to exchange with other patients to hear about their experiences.

Can you tell us about the consequences of prostatectomy on your intimate life? What do you do to overcome these consequences? Is it effective?

I started rehabilitation 3 months after the surgery. After the first edex injection, my wife and I tried to be intimate but the failures outnumbered the successes. It is very hard to find the right dose of edex.

Almost three years later I still can't manage a spontaneous erection, but it's a success almost every time; however, it is mechanical, and I always feel pain.

Do the side effects of the prostatectomy have an impact on your love life? Can you talk about it with your partner? What did the surgery change in this area of your private life?

Yes definitely! However, we manage to achieve pleasure together several times in a row despite it all. My wife and I do talk about it often, but she has trouble with the lack of spontaneity in our physical relationship: everything is calculated in advance.

In retrospect, what would you like to tell the doctors were there during your treatment? How can we improve care for prostate cancer patients?

Above all, we need to get away from the idea that it's just a "medical act", as they say! Doctors should be trained on what this operation represents for a man, on a psychological level. It's true that they save our lives, but life isn't the same for patients afterwards.

Finally, what advice would you give to other Carenity members who have prostate cancer?

Don't hesitate to express yourself freely on the forum, it helps everyone!

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