For the past four months, I have been publishing blog posts in Finnish under the subtitle ”Stories and feelings about health and experiences with healthcare services”. I mainly write about my own personal feelings and subjective experiences as a customer of the healthcare system. There are altogether twenty-five blog entries in the entirety of this journey of my experiences.
My journey in healthcare starts in November 2022. At that time, I will be living in the aftermath of a prolonged flu. Unbearable back pain is caused by continued immobility due to a flu that has lasted too long. Regular Nordic walking in varied terrain has been a lifeline for me for years. With it, I manage to keep my back in shape and the pains away. On the tenth day of crippling back pain, I finally end up seeking help to my situation through our public health care center.
At that time, of course, I can’t imagine what kind of journey I’m about to embark on when I am trying to get to myself a doctor’s appointment. I am blissfully unaware of the small tumor nesting inside me and the effect its existence will have on my life over the coming winter and spring.
In the routine laboratory tests ordered by the doctor in November, an elevated PSA value is revealed. There is a suspicion of something more serious. I understand that right away. However, the doctor does not describe what the issue is. She’s not talking about cancer. Repeated tests and prostate palpation lead to a referral to a hospital. After mid-January, an MRI x-ray will be performed. That’s where the tumor is noticed for the first time. The radiologist classifies it in his report. The urologist who tells me the results of the scan on the phone doesn’t talk about cancer either. She makes a referral for taking a biopsy.
I familiarize myself with the classification of the MRI finding in the statement. High risk, clinically significant cancer is likely to be present. I understand that now we can talk about cancer with a high probability. At the hospital, the doctor performing the biopsy at the end of February is frank. He states that the existence of cancer is being confirmed here with the help of this biopsy. A couple of weeks later, on March 10th, in the pathologist’s statement, the tumor is described as aggressive cancer.
For the sake of its agrressivity, the next stage is to find out if there are any metastases to be found. After that, we can meet with the urologist on the last day of March to discuss treatment options. The treatment consultation concludes with RALP surgery, which will take place on the third Friday of April. Modern robot-assisted laparoscopic surgery allows one to leave the hospital already the day after the operation.
Now it is almost three weeks since the surgery. According to the surgeon, it went as planned. Recovery is also going quite well. Surgical wounds are healing. I’m getting rid of the indwelling catheter that I carry with me at home for a week. I can stop taking the pain meds right after that. I am at home on sick leave from my voluntary work. I can go outside every day. I live in my new, hopefully temporary reality. That reality is resolutely scheduled by the very unpleasant incontinence that came as a consequence of the surgery.
Almost half a year has passed since I broke my back and applied for healthcare services. I have experienced a lot during that half year. There have been many thoughts in my mind. I have felt painful emotions, a flash of fear, I have also had some moments of panic. I have experienced distressing lows while queing somewhere or waiting for test results. I have acquired detailed information about my situation by familiarizing myself with the latest news in the field and reading a book that tells everything. With the progress of spring, I have gained strength from the light, acquired support for my inexhaustible thirst for information from databases and learned to understand the words they contain.
My journey accommodates quite a number of healthcare employees, professionals working in different positions. But I wouldn’t characterize my journey as having done it together with them. All by myself and with the support of my loved ones, I have travelled my journey. In each of the different phases, there has always been a new, never-before-met healthcare professional. I have met only three people more than once on my journey. The primary health care center doctor (twice face to face, once on the phone), the surgeon who performed the surgery (on the morning of the surgery day and after the surgery in the recovery room) and one of the nurses in the bed ward (did the evening shift and the following morning shift). I have never met face to face all these people who influenced my journey. With some of them I haven’t even had an online or phone connection. But undoubtedly, they all have had their own important role during my path of treatments. Each of them has been a very necessary link in my chain of health care steps. At times I have had a feeling of being like a pinball ball being fired onwards over and over again.
A total of one hundred and sixty-five days has passed since the beginning of my journey, until I came home from the hospital after my surgery. Afterwards, it doesn’t seem so long. But during that journey, it has felt painfully long at many points. Especially during the distressing thoughts of the beginning of the journey, in so many moments of uncertainty and in situations like the peaceful atmosphere of Christmas with my whole family. The waiting is long, especially in the midst of unclear doubts, in the absence of dates for upcoming examinations and waiting for information on the results of examinations. It feels far too long when the diagnosis has been without confirmation, when you have struggled in the jungle of treatment options and familiarized yourself with the touching stories of your peers online. Living through those days one day at a time, it has more than once felt like agonizingly long. The transitions from one phase to the next are almost unbearable.
Even though I am now writing about the end of my journey, it will still be continuing it for at least another ten years. The final check-up with my surgeon is scheduled for twelve weeks after the surgery and before that another visit to the blood tests. Of course, how to proceed from there depends on the final inspection and its findings. The organs removed during surgery are examined by a pathologist, and if cancer will be found outside the tumor itself, a follow-up plan is made based on that. The current information about the future is PSA measurement with a blood test ten years from now. At least every six months in the beginning, later perhaps once a year.
In my blog posts, I have several times emphasized my need to get relevant and up-to-date information. That’s what I have also got, but only by actively looking for it myself. After the final diagnosis was confirmed – at that point the journey had already taken one hundred and sixteen days – a Personal path was opened for me under a designated website under the title Prostate Cancer. That Personal path contained all the necessary information, including the steps I had already left far behind. I wish I had been able to make that path Personal already at the very beginning. It would have been extremely useful for me and solid support from the very first steps.
We are all individuals. Individuality also includes the fact that our attitude to the phenomena and events we encounter in life is individual. In addition, each of us have very individual everyday resources, the resources that have been accumulated during the life we have lived and the experiences it has given to us. Based on these everyday resources, we are capable to receive information and handle situations that come before us. While I am downright thirsty for information and feel the need to be doer in my own path of treatments, someone else has the complete opposite attitude. All of this should better be taken into account at the start of the journey.
Cancer is a nasty disease and as a word such that it takes people’s thoughts immediately to death. In my darkest moments, I too, have been planning my funeral. Still, we know that a huge proportion of cancers are treatable and curable.
Prostate cancer is the most common cancer in Finland, even more common than breast cancer. Prostate cancer is mainly a disease of ageing men. If all men were to undergo accurate examinations, the probability that prostate cancer cells would be found in a man’s prostate would approach the man’s age in years. It is 60 % for a 60-year-old and 80 % for an 80-year-old.
At my age, that probability is 68 %. No wonder that prostate cancer was found in me.
It has been estimated that one in ten latent prostate cancers could develop into a symptomatic disease. Most men diagnosed with prostate cancer will never develop symptoms of it. They also wouldn’t die of it even if the cancer was not treated at all. Most prostate cancers progress so slowly that the patient’s other diseases or advanced age significantly shorten the time when prostate cancer would have time to progress.
Six months ago, I didn’t know I had prostate cancer. Three weeks ago, right before the surgery, I could not have known about it without the tests. My cancer had no symptoms whatsoever. I was in excellent health, and no one could tell that I had an agressive prostate cancer inside me. The urologist told me during the treatment consultation that if nothing was done now, the cancer would have spread in five years, and in ten years I would probably be dead.
I have been given the opportunity for additional years in my life. I am grateful for this opportunity.
JYRKI PINOMAA 