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The number of new cases worldwide in 2018 surpassed 1.2 million1 and it is second most commonly diagnosed cancer in men worldwide. Living with prostate cancer, whether you are a patient or a caregiver to someone with the disease, could affect how you conduct your life and relationships.
When you are diagnosed with cancer, you might have lots of emotions and questions on your mind. Communication with trusted friends or family members, as well as with your healthcare professional could help alleviate some anxieties or answer any questions you might have. All patients suffering from cancer are unique and so are their or their caregiver’s, experiences of the disease. Speaking about your cancer might help you to cope with the disease and it could also help others in a similar situation.
Here are five stories of patients and caregivers recounting their experience with prostate cancer:
- Maria's story, Portugal
- Edward's story, UK
- Matias’ story, Brazil
- Anthony’s story, USA
- Paul’s story, USA
Trying to remain positive as a caregiver for my husband
My husband has always been very active. He works 10 hours a day as a dermatologist, plays soccer every Sunday, and loves spending time with our three kids and our two grandchildren. During a routine check-up in early 2018, my husband’s physician detected elevated PSA levels and referred him to a urologist for an MRI and biopsy. The urologist detected localized prostate cancer. We were completely surprised at the diagnosis. At 59 years old, my husband had not shown any symptoms, and as a physician myself working in Medical Affairs at Bayer, I also had not noticed any signs of the disease.
The urologist suggested a few different treatment options, but strongly recommended that my husband undergo robotic surgery, which offers quicker recovery times and less side effects than normal surgery. While my husband had a positive attitude about the diagnosis because he knew it had been caught early, I was really anxious. I knew it wasn’t a death sentence, but I was worried about all of the potential side effects and how my husband would cope with them. We kept my husband’s cancer diagnosis a secret, even from our grown-up children.
It took some time to find a surgeon who could perform robotic surgery, so my husband was finally able to get an appointment for the surgery one and a half months later. One week before the surgery, we told our kids. Our oldest, who is also a physician, handled the news fairly well, while the other two were shocked. Our children were all very supportive and came to the hospital to help us all get through this difficult and emotional time.
Researching my role as a caregiver helped me to plan ahead
My husband quickly recovered from his surgery and only had to stay in the hospital for a few days. Unfortunately, due to complications with urinary retention, he had to go back to the hospital three times after the initial surgery. I did a lot of research before the surgery on various websites, including those of patient groups to understand my role as a caregiver as much as possible in advance. Because of this research, I knew to plan ahead and take care of all of the practical things that my husband might need after his surgery. For example, when my husband was dealing with post-surgery incontinence, I had already purchased pads and they were ready for him to use.
My husband was able to go back to work after just three weeks, but had to stop playing his weekly Sunday soccer games for two months. He started to talk to his closest friends about his cancer diagnosis after the surgery, but still doesn’t feel comfortable talking about it openly. He is free of cancer now, and only has to go to the doctor for regular check-ups every 6-12 months. He is enjoying life even more than before and is overall back to normal, besides some sexual problems that he is dealing with as a side-effect.
I have heard that some people doubt PSA tests, but I disagree. There are risks of false-positive results and side effects from biopsies, but if you do have prostate cancer, PSA tests offer a much better chance of detecting the cancer as early as possible so that you are still able to cure the disease. Thanks to the PSA tests, we were able to detect my husband’s prostate cancer very early on, and now he is back to living a normal life.
Supporting my father and my best friend while fearing the diagnosis myself
My father was diagnosed with prostate cancer when he was in his eighties. This was difficult news for my family to handle, but, given his age, I have to admit that it wasn’t a complete shock. What I didn’t expect was that one of my closest friends, the best man at my wedding, was diagnosed with prostate cancer not long after. When he told me, I was taken aback – he is only one year older than I am! Luckily, because he regularly checked his PSA levels, they caught it early and now, after surgery and treatment, he is in full remission.
I suppose these two diagnoses instilled in me the importance of regular PSA tests, and early in the summer of 2018, I went to the doctor for a regular check-up. After the experience of my best man, I asked to have my PSA levels checked in addition to the routine blood tests I usually had.
My doctor found that I had elevated PSA levels and due to these elevated levels, coupled with my family history, I was referred to a consultant at a local hospital. There, I had further urine and blood samples, an ultrasound, and an MRI scan. At this stage, although my prostate was enlarged, there was no obvious evidence of cancer, so a series of 24 random biopsies were taken.
After these numerous (and uncomfortable) tests, I unfortunately picked up a massive infection and had to be hospitalized the following day. My immediate family was incredibly supportive throughout the whole process, allowing me the space I needed to get my “head straight” in preparation for outcomes of the biopsies, but also love and support when I needed it. It was a tough time because I felt unable to discuss what I was going through with my extended family due to the situation my father was in. Two weeks later, my biopsy test results came back negative and the consultant determined that I did not have prostate cancer, but recommended regular PSA level monitoring going forward. I’m sad to say that later that summer; my father ultimately lost his battle with prostate cancer metastases.
Ignoring symptoms is like crossing a busy road without looking
I gave my best friend and my father the support I could; I vowed to give them both of them as much time as I could and it was incredibly important to be able to listen to their fears as well as their hopes for the future.
Cancer is a menace – it needs to be discovered early and rooted out. All it takes is a blood test – I’d advise all men to include a PSA test in their routine check-ups. Of course, a first indication of the disease does not automatically mean you have it – I had elevated PSA levels but I do not have prostate cancer. However, ignoring the symptoms is a bit like not looking before crossing a busy road – you may not die, but the chances of you doing so are immeasurably higher if you don’t.
I will continue to monitor my PSA levels every six months to a year. For my best man, having his PSA levels checked regularly saved his life.
Supporting my father through his prostate cancer
My father was diagnosed with metastatic prostate cancer in 2010 when was 77 years old. Our family was shocked. My father had always been diligent about attending 6 month checkups to test his prostate-specific antigen (PSA) levels, but from one visit to the next, the PSA levels showed up higher than usual. He had a biopsy and the Gleason score was 9, meaning the cancer had already metastasized. We couldn’t believe that such an aggressive form of cancer could develop in a short space of time between tests.
My father started androgen deprivation therapy (ADT) immediately. We all thought that, despite the metastases, prostate cancer was a manageable disease, considering the many treatment options. We were lucky that for the first three years, the ADT treatment helped to control his PSA levels, but after three and half years, he developed bone metastases.
His doctor helped him to manage different side effects from the treatment but he changed a lot – he was down and wasn’t as optimistic as he used to be. Physically he had a lot of problems with his muscles and his bone metastases were painful. He stopped riding his bike and often complained of feeling dizzy.
I tried support him as much as possible. I visited him more often and cheered him up. He always knew he could come to me if he had any questions or concerns about his treatment. In 2014, we had our last family trip to Cancun. It had always been my father’s dream to see the Caribbean Sea and I’m glad he got to do that before he died.
The effect my father’s cancer had on our family
My Mom worked tirelessly to make everything as comfortable as possible for my Dad. She cooked for him, managed the household; her life was centered on him and his disease. My father worked until the day before he had to go to the hospice. My mother couldn’t take care of him anymore; he could barely walk, the metastases had clouded his brain and he was confused.
When my father passed away, my Mom struggled to cope with losing him. They were married for over 45 years and she felt as if her purpose in life had completely gone. If there’s one thing I learned, it is to support your affected family members as much as you can. My father clearly needed support – both emotionally and physically – but so did my Mom.
My father’s story motivates me to do everything possible to help patients in my professional life. I still work in Regulatory Affairs at Bayer, and I push hard to file drugs for approval as early as possible, especially in my home country of Brazil. I know firsthand how much a medicine can change not only the lives of patients, but for those that love and care for them as well.
Prostate cancer is not limited to the over 50s
There is still the belief that prostate cancer is a disease that only affects older men, but I was 48 when I was first diagnosed. I had radical prostatectomy, and began preventative treatments soon after. It is not common to be checked for prostate cancer until age 50 although men can check with their doctor and get a simple blood test for Prostate-specific antigen (PSA levels) regardless of their age.
After my diagnosis, it was difficult for me to communicate that I had prostate cancer. I wasn’t sure how everyone around me would react or if they would treat me differently because of my diagnosis. It was most difficult to tell my family, but I am fortunate to have them close. Even now, while I am in treatment, talking about the side effects is a hard topic to discuss with anyone.
It has also been difficult to keep up with my everyday life and continue to do the things I enjoyed most. My energy level has been much lower and the treatment side effects can limit all activities.
My advice to other men would be to communicate with your doctor, get second opinions, and ask a lot of questions. Let your family and friends help and know there is a ton of information out there today. It can be beaten!
Acting quickly can make a difference
I was diagnosed with prostate cancer when I was 57 years old. Luckily, the disease was caught early on. I went to see the doctor since more frequent urination was interfering with my sleep.
My primary care physician initially thought there was nothing to worry about but referred me to a urologist to be on the safe side. My prostate-specific antigen (PSA) level was 4, which was not necessarily considered high. A biopsy found prostate cancer and the Gleason score showed that the tumor could become aggressive.
When I found out, I couldn’t believe it. My father also had prostate cancer, but he was older than me – in his 70s – when he was diagnosed. I called my wife and told her right away; it’s not something I could have kept a secret. My urologist suggested a prostatectomy right away as the tumor was contained within the prostate and luckily had not spread. The surgery was performed two months after my diagnosis. I was in quite a lot of pain afterwards and had a few post-surgery issues, but in time I healed well and have been free of cancer since then.
Nowadays, I get my PSA levels checked every year by my primary care physician. I would recommend men to get their PSA levels checked regularly and to act quickly if cancer is detected. For me, the surgery was the best option. I would make the same decision if I had it to do over.
1 World Health Organization, International Agency for Research on Cancer, Globocan 2018, Prostate Cancer Factsheet , Last accessed October 2018
2 National Cancer Institute, NCI Dictionary of Cancer Terms, PSA, Last accessed October 2018
3 National Cancer Institute, NCI Dictionary of Cancer Terms, Gleason Score, Last accessed October 2018
4 National Cancer Institute, NCI Dictionary of Cancer Terms, Hormone therapy, Last accessed October 2018
5 National Cancer Institute, NCI Dictionary of Cancer Terms, Radical prostatectomy, Last accessed October 2018
6 National Cancer Institute, NCI Dictionary of Cancer Terms, PSA, Last accessed October 2018
8 National Cancer Institute, NCI Dictionary of Cancer Terms, Gleason Score, Last accessed October 2018
9 National Cancer Institute, NCI Dictionary of Cancer Terms, Prostatectomy, Last accessed October 2018