Hi,
Firstly I would like to thank everyone on here who has posted and responded to me, your advice and words of wisdom really helped me and I can't thank you enough. I hope you are all well.
Secondly, to the specialist nurses on here another massive thank you. The work you do is incredible and the advice and compassion you show is a credit to yourselves and this organisation. You really calmed me down when I was struggling, I never once felt rushed or that I was bothering you. If anyone reading this is thinking whether to phone or not, please do, as it is an outstanding level of support and practical advice.
I have debated posting this as I didn't want to come across as insensitive to anybody on here and their situation. However, I think if I could help just one person who finds themself in my situation, and is a worrier like me, and they can take some comfort from my experience then that's good enough for me.
Got my biopsy results yesterday after a long and anxious 5 week wait. I am glad to say the results are benign however, as above, I do not want to come across as insensitive to others who haven't been so lucky.
I just want to paint a picture to anyone who reads this and, like me, spirals into thinking the worst. Please try to take a step back from all the numbers and scores that you may get. I know how difficult it can be to stop yourself from worrying, if you are a worrier you are a worrier and nothing can change that.
I went for a Doctor's appointment 5 months ago and mentioned recurring urinary problems that I had for at least 7/8 years. I had a prostate exam and was told it was abnormal, went for a blood test and got a call to say my PSA was over 6 (should be 2/2.5 based on my age I was told). Referred to urology, had a further blood test the following week. Waited a week for results, eventually phoned looking for them and was told PSA had gone from 6.3 to 4.2 in a week. I was assured that this was infection and told not to worry. The Doctor I spoke to said she had looked at what the GP had wrote about my "abnormal" DRE and said that was nothing to worry about either. She said I would likely be discharged at my consultant appointment a few weeks later.
I went to a Urology Consultant and was told I had to go for an MRI. I was told there was a process and it had been done wrong. The consultant was a cold, unhelpful man who just wanted me out of his office. He didn't want to answer any questions and turned to me mid question and said "thanks for coming". Had another blood test at this appointment and PSA had dropped slightly to 3.9. I was given a follow up appointment for 3 months time.
Waited for the MRI and eventually got an appointment. I was told to expect the results in 2-3 weeks. I waited 3 weeks, hadn't heard anything so phoned the consultant's secretary. He phoned me back the next day, told me there was a shadow and that I had to go for a biopsy. Again, he wouldn't entertain any questions, just told me my chances were "50/50" and that it was too early to say if it had spread or not. It is clear that I wasn't going to get the results of my MRI until the follow up appointment but for the fact that I phoned.
I then start to go into overdrive with Google and reading studies. (Please don't, I know it's easy for me to say now, but it's not going to do you any good really) I look at percentages of PIRAD 3 based on the consultants 50/50 comment and manage to get myself into a relatively positive frame of mind thinking the chances are actually quite low. I then wait until the weekend is over and phone to find out my PIRAD score thinking confirmation will give me some comfort. I'm told it's a PIRAD 4 and I'm once again off into a spiral and on Google. Now convinced that I have cancer and worrying about my 3 year old daughter.
A few weeks later, solely because I phoned and asked for cancellations etc, I got a biopsy appointment. I had a targeted biopsy. If anyone reading this is going for one, please don't worry. You will have to leave your dignity at the door, it is uncomfortable but I didn't find it painful. It felt like a few scratches and I was 5 minutes at most from getting called through to getting back to my seat in the waiting room. I'm told at the end that it will take up to 4 weeks for the results.
The first couple of weeks aren't too bad as I know I'm not getting the results so I can be relatively normal. The stress ramps up towards weeks 3 and 4 and I start researching again. I'm looking at PIRAD scores, studies, if MRI results can be misinterpreted.
Get to week 4 and I phone for the results. I'm desperate and just want to know what I'm dealing with. I'm told "I'll see if I can fit you in". I ask a number of times if a Doctor can just phone me and tell me yes or no, I don't need a full breakdown at this stage but I am told that's not the process. I then get an appointment for the following week.
Day of appointment arrives, I'm a nervous wreck. My appointment is for 430, I get a call at 1130 and I am asked if I can come in at 130 instead. I panic thinking this is because it's bad news. I'm already thinking if it was good news I would have been told over the phone. I've convinced myself that my life is going to change that day.
I go to the appointment and get the same cold, unhelpful treatment from the consultant but as soon as he says "the samples are benign" I don't care.
I feel very lucky and in no way want to come across as if I am bragging. I describe all above to show anyone reading this post and worrying about their situation not to read too much into scores, waiting times, which method they choose to give you the results (phone, letter, appointment). I was convinced with a raised PSA for my age, an abnormal DRE, a PIRAD4 lesion on my MRI that I had cancer. It turns out to be "normal enlargement for my age" according to the consultant.
I hope this may bring some comfort to anybody reading this. I will continue to monitor this so if you want to reach out to me please do so. Please also contact the specialist nurses if you are stressing, they do an amazing job and will get you thinking rationally.
Take care!
Bryan