Richard has kindly shared his story of prostate cancer diagnosis. We hope you will find it helpful and supportive. As always you can call us on 021-4276688 or email us on firstname.lastname@example.org for more information.
Ellen Joyce, Director of Services at Cork ARC Cancer Support House
Thank you for hitting on my blog. I hope you find it educational, supportive and above all gives you confidence and hope that you can recover, manage and/or live with Cancer.
I was diagnosed with Prostate Cancer in February this year, it’s now August and I am feeling ABSOLUTELY FANTASTIC. Did I ever believe I would write something like this during the past 6 months ABSOLUTELY NOT!! So read on reader, there is a happy ending to this.
But before I tell you about my story, I want to put a few disclaimers in place.
This is my first ever blog, so I am not in the media business or promoting anything other than hope. I am not good at this sort of thing; it’s just an honest download.
I understand that all cancers are different and we all manage to live with cancer in different ways, so I am not promoting that my methods, experiences and decisions are a recipe for success. I will only give you my best known methods from my perspective.
You may suffer from my Cancer or other types. You maybe a spouse, family member or friend of someone who is trying to cope. My blog is meant to reach out to you with ARC House so that we can help… I know I certainly needed someone and a facility like ARC House to get me through the past 6 months.
I am going to put RULES OF THUMB in place in the blog to help you, should you desire to follow my guidance.
I believe I am like any average guy. I am 55 years old. I work hard, have a loving family and try to equally balance supporting both although I do this badly. My wife would say very badly. I put in a lot of working hours on a weekly basis. I don’t have hobbies but actually I love my job, so it’s a hobby in itself. Oh I almost forgot I don’t do Cancer; other people get that and certainly ones close to me-more about that later. I am too busy to get ill and my health up until now holds testimony to that, I even rarely get a cold. My weekly calendar has no time for illness, there’s so much to be done.
Every three years the company I work for gives me a health check. This is the time my assistance nags me to go and get myself checked-out. It’s a case of constant moving around the appointment to fit it in between meetings. But last October was different; I prioritized it for a special reason.
My brother in law, Dan, sadly passed away from Prostate Cancer three weeks previously. Dan was one of the nicest guys you could ever meet. I knew him for nearly 30 years. Dan was diagnosed with Prostate Cancer three years prior to this but it was one of those rare circumstances where the detection was too late. Dan and his wife Maeve and his family’s story deserve a blog of their own as I witnessed the struggle, the bravery, the bond and the emptiness that he left behind. They put on brave faces every day, but I know it’s tough.
So dear reader , if by any chance that through Dan you improve your chances to live with or prevent Prostate Cancer affecting you or your loved ones, then I am sure that Dan’s family will get even more gratification from the legacy that he left them.
So with Dan front of mind, in I strolled to get my health check done –in between meetings and on my mobile I hasten to add. Provided them with all the data to write a health assessment and gave them enough blood, urine etc. to ensure that graphs, charts could be created to show that I was in the best of health, that I need to watch my diet and exercise more. Yada Yada Yada……. . my PSA was going to be excellent; I have no symptoms of any sort to suggest otherwise.
The following Monday 5th Nov, I got a call from the doctor as I was about to have a quick dinner with my wife before catching a flight to say my PSA was 9!!! This was a HOLY GOD moment as over the years with Dan and a neighbour who also since passed away from Prostate Cancer, I became somewhat of an expert in PSA’s and Gleeson Scores. I knew I was in trouble. I am not in the medical profession and this is not a paper in PSA theory and the potential risks on PSA readings, this is just my story.
I immediately went to my local Doctor the following morning and asked for support, advice. He could see me losing it in front of him, normally I am strong but this absolutely gets to you like nothing else. He put me in touch with a Urologist, whom I met 2 days later, where I had to do two further PSA tests to ensure that they could get a consistent reading.
Both PSA’s through November and December gave readings of 6.5 ish. By this stage the nightmares are well and truly in place, EVERY night. You are completely distracted as you are very quickly faced all sorts of potential ramifications. Yes, I did Google mortality rates on Prostate Cancer. I was not even diagnosed!!! but you do, at least I did. I read all sorts of crap.
My urologist then decided to do an MRI and Biopsy to determine why my PSA was high. Even though 6.5 is not that high, it was enough to suggest something was not right. At this stage in my mind I had about 3 years to live… I was leaving this world and thought about a horrible state of decline to a 1 way ticket to Switzerland. No one can understand the torment you go through. I had no one to speak to, except my wife. I could write another blog about her. My best friend, my rock, my everything. I don’t know how I could have got through this without her and yet she did not tell me once she was worried, I knew she was, she just gave me 1 liner’s all through the 6 months – We will get through this. You will be fine. The diagnosis, the prognosis, the operation, the post care…. You will be fine!
I know dear readers, some of you may not have a spouse, but you can have a buddy. ARC house can help, it’s a very dark place and you need someone to listen to you, you need to talk.
We decided not to tell our 2 grown up children until as late as possible. We did not want to worry them. It was only when I was going in for the biopsy that we decided to tell them that I was going in for tests. For me, even the MRI was a scary moment, it was surreal. I felt great, I had no symptoms and yet I was getting this MRI that other Cancer patients get to access the location, etc. Even though they are young adults I miss-underestimated their strength but also their fears, looking back I did not do a good enough job in helping them through the process.
Even though I did take control of the situation, I was in denial. Initially I fooled myself into thinking I was taking control but I spent more time travelling, worked harder, longer hours just to distract myself from reality. The sleepless night continued and the moments alone depressed me more and more as I feared the worst. In other words I talked a good game but I did not act.
I went for the biopsy in February, if I look back now I should have done it sooner. There was no reason to put it off other than being scared of the outcome. Bad decision on my part.
The result showed that I had a tumour in the prostate and my Gleeson Score was 4+3. Now I was in serious trouble. My Urologist was telling me all sorts of options and treatments and not to worry. He explained in detail about the situation and not to worry… now on the other side of the table, I was trying to absorb the information like a supercomputer–I HAVE CANCER- all the options to me – I HAVE CANCER- all the treatments –I HAVE CANCER, not to worry –I HAVE CANCER.
As we drove home, we revisited the meeting for the next 2 hours, I was somewhat of an expert, but what did he say again? What did he mean when he said…?? Only for the notes. Only for another educated ear in the room.
We were given 2 weeks to agree on a treatment. I thought that I would be told what treatment to take, but in my case as it was caught early, I had several options for treatment.
Now it was time to tell family members AND to get educated.
Telling them was tough, you want to be really honest with potential ramifications but you also want to protect them. If I look back now, I don’t think I did a great job and helping them accepting my cancer. If I asked any of them were they OK, of course they said yes.
I find people strange in general but none more so in this case. Some ran away, some wanted the scoop, some were great and very understanding, and some did not want to know. The worst thing I wanted to hear, and in Cork I heard it a lot –“Ah sure you’ll be fine” “Sure didn’t they catch it in time!” they all meant well but I wanted facts and someone to listen to my fears, someone I could open up to …. for some reason I did not know ARC House in Cork was there for that very reason. A big miss on my part.
Going out as couples from Feb with friends was awkward. Women in general did not want to talk about it and the guys wouldn’t talk about it… Another great Irish habit is to describe someone in a situation far worse than you. “Gad, your lucky, I know someone who was riddled….” . One of the great mysteries in life. Honestly I could not care and it adds no value or real perspective to my situation. It’s a sort of comforting gossip conveyed by the messenger.
You need to talk, you need to listen but ultimately you need to take control. GET EDUCATED. I needed to know about the cause and effects of Prostate Cancer. I saw what it had done to Dan. I wanted to know more about each of the treatments. I got on Cancer Web Forums, I searched for on line information, I researched the treatments and the short and long term impacts they were going to have on my life, my risks to long term incontinence and erectile dysfunction and above all best possible chances of cure.
I purchased White Papers from the JOHNS HOPKINS MEDICINE INSTITUTE, based out of Boston. I would recommend these; I found them informative, easy to read from a layman’s perspective and helped me understand how the treatments and the ramifications of such were going to have.
I found talking to men who have suffered from Prostate Cancer the most value to me. They really understood what I was going through and gave me huge confidence with what I was going through and open and honest with potential lifestyle changes that I would expect to have in the coming years.
I created a spreadsheet and outlined all the various treatments, percentage cure, impact to my life, work, recovery time and overall weighting on a prioritization I wanted: 1-Cure; 2-Dry and 3-Erect. Above all I wanted to be cured and get the best treatment to create the optimum long term survival. Being continent from a quality of life perspective was next on my priority list and then erectile functionality.
I found I wanted to simplify the decision making process and focus on what was most important and not try to ultimately confuse my priorities. So I used a weighting factor of 70/ 20/ 10. This made the decision to have a prostatectomy the best treatment for me.
One other important factor, make sure you decide this as a couple. It’s not only how you are going to get though the cancer treatment and any impact the treatment and or consequences these will have on your life thereafter. It’s fundamental that you make the right decision as a ‘team’.
I found as I gained in knowledge, I became more positive about the outcome. I also noticed that as I became more positive, my relatives and friends in turn responded and this created a spiral effect where we all felt as a family more in control and more capable of dealing with the illness. We were all going to be OK.
One I made the decision. I could not wait for the prostatectomy to take place. You keep thinking that the tumour is growing inside you and would it have metastasized, despite what the experts tell you. I wanted it out!!! I worked up until the 23rd of April and on April 24th I was admitted and waited in my room, the surgeon came to see me asking me how I felt. Again, I told him that it was surreal as I thought it was still just a nightmare and with no symptoms, I expected to wake up as any moment. I was more interested in the welfare of the surgeon at that stage, I was committed, I was hoping that he had an early night, no drink for several days and was going to have the mother of all surgical procedures – btw I told him so. . I also came well prepared in the fact that I had my A TEAM with me: my wife and my sister in law, Maeve. They were by my side throughout the whole procedure. It takes a lot of courage to lose your husband to Prostate Cancer and then 6 months later helps someone through a similar situation.
I won’t bore you with the details of the operation in the blog, but if anyone would like to know more of what I went through then I would be happy to, we all love telling people about our operations. The operation itself was a 100% success, my prostate removed, nerves spared and no sign of any cancer in the lymph nodes taken. I would have to wait for the histology results in 5 weeks for the definitive result.
I cannot sit still by nature, but the recovery process is tedious. You do need time to recover. Your body has gone through a major operation. I judged myself every day and if I did not see any dramatic recovery, I got worried. Looking back now, it’s a matter of time; we all recover in different timescales. My company was brilliant and gave me 10 weeks off, I needed every day of that. It took me until mid June before I felt good and got out to play 4 games of crap golf(the way I usually play) in the last 2 weeks of June.
I got my continence back after 6 weeks which was a huge relief. Some take longer so don’t use this as a benchmark. There are awkward moments during that period. I know others who have catheter’s full time but they too get on with life and adjust, which proves my 30% weighting.
I got great news from the histology results 5 weeks after the operation that the cancer was contained within the prostate. They did find 2 additional tumours and with a 4+3 Gleeson Score it did show that this was aggressive and I was lucky that my PSA test was done at the right time. It goes without saying that if you don’t look after your body and get it checked on a regular basis then you will run the risk of waiting until something serious happens before you act. So get tested on a regular basis.
Finally, I returned to work on July 1. It’s great to be back and whilst it’s still surreal, it was a horrible rollercoaster ride. I will have to get tested on a regular basis over the next 10 years to ensure that it’s identified early if it comes back. Will I have moments of doubt and trepidation with every test, of course I will. I have 1 test done and my PSA was 0.1, I am extremely confident that I have nailed this one. I can either worry for the next 10 years or change my approach and live every day to the full and enjoy the moment. It’s great to be alive folks.
I have a great family, relatives, friends and NEW friends whom I have met in the past 6 months. Your family and close friends are the most important people you will ever meet. Look after them – they are the ones you will depend on in your hour of greatest need.
So dear reader, enjoy life, you deserve it.
Rick’s 10 Rules of Thumb
RULE OF THUMB 1: It’s your life and your only one, take control of the situation and own it. It’s not the doctors or specialist’s responsibility to manage the situation for you.
RULE OF THUMB 2: Be careful of what you read on the web. By nature we are pessimistic, so you will read the worst case scenarios, 99% of the time it’s not you.
RULE OF THUMB 3: Bring your spouse/family member and have her take notes, excellent notes as we did.
RULE OF THUMB 4: It’s your decision on the direction you take.
RULE OF THUMB 5: Get as knowledgeable as you can.
RULE OF THUMB 6: Make the right decision for you and your spouse.
RULE OF THUMB 7: Stay positive.
RULE OF THUMB 8: Take the right amount of time to recover.
RULE OF THUMB 9: Get tested regularly
RULE OF THUMB 10: Enjoy life, you deserve it.