Hello All,
I wanted to post a good news story after a very difficult and anxious 5 months. I hope my story gives some hope to those of you who are waiting on test results. I know how suffocating and all consuming the waiting can be.
Early September - Decided to bite the bullet and make an appointment with my GP. Now I'm 52 I'd been meaning to get round to asking my GP for a PSA test for some time. I had some burning pain when passing urine and a frequent urge to go. This was the push I needed to make an appointment. I thought it would be an infection and just a case of getting some antibiotics. GP was great. Had the DRE and he said he would refer me as he thought he felt an abnormality. Gave me some antibiotics in case it was an infection and this sorted the initial problem in a couple of days. Alarm bells started ringing as I'm now on the 2 week wait pathway. I cling onto the phrase from my GP "I'm not worried and if I was I'd tell you".
Next day get a call to go in for a blood test. Get a text to say all normal. Check on the NHS app and PSA of 0.26. Anxiety drops off a little. That's really low I think. I cling onto this.
Letter arrives a few days later - Urgent Suspected Cancer Pathway Referral - now I'm worried.
A couple of weeks later I get an appointment for a MRI. Now waiting again for results. I'm hoping that a biopsy is not required.
3 weeks later I get a call to say a "shadow" is on the MRI so come in for the biopsy early October. This news just make me feel really down. Day of the biopsy I am a pretty nervous. I expected to rock up, get it done and then more waiting. Now I get hit with the bombshell news that it's a PIRADS 4 lesion. With this news I am told that I will need a full template biopsy irrespective of whether the first biopsy is benign or cancerous. Great! The procedure wasn't uncomfortable but not really painful. The PIRADS 4 news was not expected and if asked I would rather not have known. I have been told my chances of it being cancer as 60% - 40% benign.
Now the really anxious wait starts and I can barely function. I think of little else and get stuck in a cycle of worry and research online which does not help with the anxiety. Appointment for results is late Oct.
A series of random letters to the GP filter through the letter box. One of which is the news that it is a T2c N0 M0 lesion. My partner googles this and tell me it will be localised if it is cancer. As good as it can be I suppose.
I get another letter. Results will be given over the phone 1 day before the appointment. As the day draws closer I am really struggling at this point.
I get the call which I take in a field on my own as I have my children at home. "All 18 samples are benign". All the emotion comes out and I'm sobbing like a baby in the field and the sense of relief is incredible.
Next day it's the appointment and the registrar tells me that "the guidelines" suggest I have the full template biopsy. This brings the back down to earth. More waiting.
I eventually get the appointment for the full template biopsy in early December (a cancellation so I take it) This is a breeze really. Under general and I know nothing about it. Some bruising and I take it steady for a few days. I am told I get the results in clinic. No idea when.
A few weeks later I get an appointment letter for the 18th Feb! Then a week or so later this is brought forward to the 5th Feb. As the days roll by I get more and more anxious. Checking the door mat for a brown envelope is a daily habit as is checking the NHS app. My thoughts are, why haven't I received a letter for a telephone result appointment this time? It must be cancer. Online research intensifies as the days roll by then I stop myself from doing this apart from the odd relapse. Shall I chase it up? What if I get bad news and then I have to wait for the appointment for the next steps? That will be worse right? All these thoughts are going through my head.
Yesterday 5th Feb. The day of reckoning. I follow the exact same routine as the last appointment. Wear the same clothes and not the socks I wore to the first biopsy. Sit in the same chair. Park in the same place. Weird right?
Then the consultant calls me in. What a lovely man. The first word is "sorry" and a for a split second I panic when I think he's about the deliver the bad news. He says " it's good news". All the samples are benign. The golden nugget "you definitely don't have prostate cancer". The feeling is incredible. One day later the feeling is tinged with some guilt about all of you who don't get such good news. I feel very lucky indeed. I am writing this in the hope that in some way it will help those of you who are in a similar position going through the waiting process.
I did call the specialist nurses at prostate cancer UK who were fantastic and very reassuring. I'm lucky my partner has been a tower of strength and positivity through this whole process. Not to mention putting up with me banging on about this subject all the time!
Good luck to you all who didn't get such good news and I truly hope you get to feel the feeling I felt yesterday. If you are currently aboard the worry train waiting for results, hang in there are stay away from google and just ring the specialist nurses. All the best and take care.
John.