Finding Meaning and Resilience in the Face of Advanced Prostate Cancer - Ángel

December 20, 2022

Ángel's story begins at 67, when he, a lawyer in the midst of a trial, experienced acute urinary retention, leading to a prostate cancer diagnosis with bone metastases. Prepared for the diagnosis but uncertain of the future, Ángel and his wife faced the news with apprehension, fearing it marked the beginning of the end. However, with the support of a young, empathetic doctor and his own resilience, Ángel navigated through treatments and clinical trials, despite being withdrawn from some due to progression or criteria mismatches. Ángel believes in the power of music, poetry, and philosophy to navigate the chaos of illness, emphasizing the importance of human connection and self-awareness in living with cancer.

Biographies:

Ángel, Patient



Read the Full Video Transcript

Ángel: My name is Ángel. I received my first diagnosis of prostate cancer very quickly; I was diagnosed with bone metastases when I was 67 years old. Today, I am 74. And how did I get this diagnosis?

Well, I must say that I was relatively well prepared. I don’t know if my wife was. But I was curious, and I also knew that the symptoms I had might be indicative of prostate cancer.

If I have to talk about the symptoms, I would have to say that they appeared while I, a lawyer, was defending a client, nothing less than defending a client in a criminal trial in Cantabria. And during a trial, I realized that I had severe urinary retention, which I had to endure throughout the trial and on my way back to Madrid from Cantabria.

Obviously, that was a long and very stressful day. And they diagnosed me with acute urinary retention, which I already knew, but that it was also suggestive of prostate cancer. Although then it wasn’t clear that I had bone metastasis. I was prepared, but I remember very well when the urologist, after various treatments and after having seen several doctors, at the same Hospital Ramón y Cajal, told me: “I think this looks like prostate cancer.”

And also, two days earlier, they had done a biopsy with the aggravating factor that it was cancer with a Gleason score of 9/10. I remember very well that when we left the clinic, my wife hugged me, crying. And she thought… we thought it was the beginning of the end. "Playtime is over," as I heard one of my friends say back then, whose wife was diagnosed, may she rest in peace, with breast cancer.

But then, a new life opened up for me. First, the recognition that cancer wasn’t necessarily incurable. And above all, it did not end right away. And then, I entered a great period of confidence because I was lucky to have a very empathetic and very young doctor. To me, she seemed like she was somewhat reticent about what she could tell me.

I remember very well that I told her, "Think of me as your father. What would you recommend to your father?" I think she didn’t pay me any mind, which was just as well. She recommended things to me as any good oncologist would do with a patient. But my wife hugged me, and we cried, or she cried for a while.

But, I repeat, it was not the beginning of the end.

After almost eight years, seven long years after the diagnosis was first made, I went through a lot, but now I can say that I am lucky. I have two different metastatic tumors: I have prostate cancer with bone metastasis, and I have cancer of the bladder, bladder cancer, with metastasis to the lymph nodes.

And I’m here to tell my story. And above all, I’m here not to show off, but to help other patients. Also, to show oncologists, officials, healthcare providers (in Spain ATS), and patients so that they learn to live together with the disease and with those who have it.

And also, for oncologists, I hope they gain more empathy, more sensitivity in knowing how to treat their patients. Of course, the number of treatments I have had to go through has been very varied. I have participated in several clinical trials, trying different drugs. I’ve been excluded or withdrawn from clinical trials because clinical trials have a terrible distinction.

The clinical trial will last... for the lifetime of the patient. Or if the pharmaceutical company decides to suspend the trial or for other reasons. Also, because the patient himself can decide for the clinical trial to be suspended.

In the case of the five trials, I think I somewhat remember, clinical trials in which I participated, they withdrew me from the trials because I stopped meeting the requirements.

For example, because the disease had progressed and the lymph nodes had grown. In other cases, because it turned out that I did not meet the inclusion criteria of some of the parameters that were being analyzed. But a moment ago, we were talking about, surely, in some of those clinical trials, I had received, because they were all double-blind, I had received not the drug that was on trial, but a placebo. And I replied that I always received it, and I’m making a big deal about it, it’s part of my way of coping with life and difficulties.

I always thought that what I had to start with was the placebo effect, meaning thinking that they were giving me the right drug. I don’t know if, in any of those cases, because in the end, I don’t know my randomization group in the clinical trials, they actually gave me, I was given the drug or a placebo.

Yes, I can say, and I do say it with satisfaction and with a smile, that my dear primary oncologist told me, "You’re bringing down the analysis because the pharmaceutical company, of course, the company is going to find out that you, even though they’re giving you the placebo, you are demonstrating a capacity for magnificent survival.”

So here I am.

This is a question the answer to which is very difficult, and I don’t want to be petty or exaggerate about this or make many mistakes. But there are some things that I would fix, yes. Yes, speaking of course, of the way that patient care is provided in Spain.

First of all, I have to make the observation that depending on the place where nature has chosen for your cells to become tumoral cells, depending on the site, depending on the autonomy, depending even on the hospital where you were assigned to receive treatment, because in Spain, there is no equality of treatment.

And it is something that must be fixed. I would fix it right away. I would fix it so healthcare can again be centralized and centrally controlled, or we conduct an audit of the various hospitals and the cancer treatment that is given in each because patients all deserve equal care.

There is a second thing which also affects Spain, and I don’t want to take too long to talk about this, but pharmaceutical companies in Spain are making ten times the investment that the State, the Spanish government, is making.

I think this needs to be fixed. It is not that we should have to depend on pharmaceutical companies; we welcome their efforts. Hopefully, there will be many clinical trials. I hope there is a lot of money coming from pharmaceutical companies.

But when it comes to dependency on pharmaceutical companies, because in Spain, and I hope I’m getting the numbers right, we are officially only spending 1.5 billion euros a year compared to the 15 billion that comes from pharmaceutical research.

We should, therefore, I think, be concerned that pharmaceutical companies are spending the lion’s share, but in Spain, we are not able to properly assess the need for research and to prioritize clinical research, and cancer research, in particular.

Regarding prostate cancer, which is one of two metastatic cancers that I suffer from, I must say that prostate cancer, a cancer that affects only men, but that affects men starting from a certain age, as I have read a lot about, almost 60 or 70% of men over 65 years old.

Much more attention, much more awareness, more checkups, much more understanding should be devoted to what patients and oncologists need. We have great teams of oncologists in Spain, but often, those who work in isolation, alone, lacking money, spending more time than necessary. As is well known, we have had the opportunity to comment other times in other forums, male patients usually don’t talk about their illnesses and, in particular, something so sensitive as sexuality, the prostate, sexual potency, ability, of course, to have intimate relationships with other people, with your partner, with other people.

I think that we need more education on this. First, education and a transfer of knowledge on what the topic is exactly, not so much the problem as the issue itself, from the patient's perspective. Nurses probably also have a lot to say about this to those people who are affected by a treatment that has surely forced them to suffer the adverse effects due to a radical prostatectomy or if they have a urinary catheter, meaning they have the problem of adjusting to a new life.

This means, of course, a lot of sensitivity, a lot of contact, not so much among patients, not so much, but maybe what I’m doing, an interference about a generic message.

I don’t believe so much in contact among patients themselves.

It’s good, no doubt. Communication among patients is good, but it is necessary to rationalize, institutionalize, or formalize this advice more. And we avoid trivializing things. It is not enough to say you will have some erection problems.

That is not enough, or that you will have to get used to having a catheter with the problems that this entails, also emptying it.

At best, maybe you will have to adjust to having other types of sexual relations or get used to a different sensitivity with regard to your partner or other people.

Also, definitely, becoming one of many people who are ill and seeing yourself as someone who is ill. All of this is good, but these are just generic messages, and you have to treat them seriously, with a lot of empathy, with a lot of sensitivity, and give your fears a voice.

As a patient, I understand that if you’re listening to me, so, dear anonymous person who is seeing this video, you may think that I like to talk, but above all, I would like to give you some options to communicate honestly, seriously, between someone who has suffered from the disease and who, fortunately, has survived almost eight years, but also to communicate with doctors, nurses, or relatives.

Contact with family is very important and also with other patients. I wish I could help to establish a generic way for communicating between patients and oncologists. I have written a book, I won’t brag about my book because I have not published it other than on the Internet. It’s entitled “Living with Cancer,” instructions, advice for patients, families, and physicians. And in it, I have summarized my own experience and tried to sum it up very broadly. I think it’s very important for family members to understand, meaning family members of a cancer patient, have to understand that something significant has occurred; they have become the relatives of a patient with a serious illness. Something that entails many sacrifices and also extreme sensitivity. It’s not so much about asking you how you are every day. Because sometimes it can be annoying always having to say the same thing. It is about developing the capacity to interact with the oncologic patient.

This is also true for friends, for family members, and for oncologists. Also, in general, for all those who get treated, or all of those who have to live or interact with cancer patients, develop more sensitivity.

For example, I have to say that we know very little about how to talk with those people who have a disease, in this world that is full of hedonism, people in search of pleasure or who hide their shortcomings and their own sensibilities. Pretending, no, being transparent, which appears to be a sign of weakness, I mean, contradicting that general idea. I think we are all human beings who suffer to some extent, and in any case, we are all finite beings. Death is always with us; it lives with us, and therefore, hiding that we are vulnerable is a mistake.

Just to recite a poem because I like poetry, a magnificent poet who, like me, died a while ago and was awarded the Cervantes Prize, a literary award. Joan Margarit, Joan Margarit said... He wrote a magnificent prologue which he dedicated to the foundation of careers. He said that we are in a world dominated by entropy, meaning chaos. We are headed towards chaos, towards… the tremendous… the tremendous increase in disorder.

Human beings have a capacity and also an obligation to try to create a very limited order in that disorder. Engineers can do it, doctors can do it, all professions at all levels. We, as human beings, all have that personal, vital obligation to put a little order into chaos. But we can’t control all of the disorder. And so, there is a bit of advice for patients: we should turn to human approach methods to control the disorder when human forces can no longer do anything, turn to music, to philosophy, to poetry. Joan Margarit. Meaning, in this case, he can also be a role model for others. In my case, although he is not from my generation, he is a little older, and he is undoubtedly one of my favorite poets, but I would say that, with him…

Poetry, like music, like philosophy, are the metaphysical refuges of extra technical communication, to calm our own sensibility, and particularly when the disease has affected you. Because besides, you are not someone who is privileged because the disease has affected you. It’s not that fate selected you to receive this misfortune.

Although, of course, a diagnosis of oncological metastasis is not, it is not the most joyful news that a human being can receive. But yes, you can resist it vehemently, seriously, turning to the technical advancements, of course, to medicine, to oncology, which is growing significantly, practically every week. But also to spiritual tranquility to know as a finite being and how that, in any case, death will be stalking you sooner or later. But you can show a very strong personal resistance, getting to know yourself more in-depth. No need to turn to the oracle of Delphi.

Getting to know yourself better means also living better.