Hi - I'm Martin, 55 years old, and very pleased to have found this forum.
I underwent a targeted biopsy just over a week ago and have a follow up appointment to receive and discuss my results on 25th November.
My journey with this started in early May when I noticed blood in my urine. My GP gave me precautionary antibiotics and took a urine sample which came back as positive for blood but negative for infection. I provided a follow up sample to a locum and this came back negative. As I was getting married that weekend and flying to America for a month's honeymoon, I was over the moon. However, when my GP saw the notes, he requested another sample as he wasn't happy that no diagnosis had been made for the first show of blood. Unfortunately, the follow up showed traces of blood (invisible) so he wanted to investigate further. After lengthy discussions with him and my travel insurers we went on our honeymoon but, as you can imagine, the concern as to what was wrong with me were never far from our thoughts.
On my return in early July I underwent a cystoscopy (not a pleasant experience) which ruled out bladder cancer and I had blood tests done. I then had a CT scan which identified a large kidney stone blocking my ureter which was causing the blood. I was also advised of a concern with my blood tests as it identified a PSA level of 13.3. However, they felt this was possibly due to the cystoscopy procedure and weren't overly concerned as a digital prostate examination identified very little enlargement and it was reported to be smooth. Naturally, I was elated that it was a kidney stone, even though it required me to have a kidney stent placed in my ureter and follow up surgery to laser the stone in order to break it up.
I had more blood tests done and was then sent an appointment for an MRI scan as my PSA was still high - I think it was 12.7 on that occasion. I went into hospital to have the stent fitted and had the MRI scan around a week after. I heard nothing with regard to the results until I went back into hospital 6 weeks later for the laser procedure and stent removal. The consultant told me that he had been asked to carry out a prostate biopsy whilst I was under general anaesthetic - however, he advised that he would only be able to do this if the stone came out easy as, otherwise, it would increase my risk of infection. The morning after the procedure, whilst I was catheterised and a bit dazed, a registrar came to check on me and advise that the biopsy hadn't been performed as the stone was a tough b*gg*r and took too long to break up. She told me she'd make an appointment for me to return as an outpatient. I mentioned that my MRI scan results had never been discussed with me, so she said she'd look into it. She popped back 30 minutes later and casually told me that the MRI had identified a small lesion on my prostate before rushing off. In my ignorance, I didn’t really know what a lesion was so I googled it. Needless to say I started to become concerned when all the results pointed me towards prostate cancer - from thereon, my learning curve has been fairly steep.
I don’t want to pre-empt my results, but I can’t help thinking that if a lesion has already been identified and my PSA is around 12/13, it’s likely that the results will be positive – would that be a fair assumption?
I did have a host of questions when I went for my biopsy as I was, by then, prepared. The consultant undertaking the biopsy advised that it was a small lesion which looked to be contained within the prostate, which was reassuring. I discussed with him the possibility of it being cancer and that information on ProstateCancerUK website suggested 80% of lesions were found to be cancerous. He disputed this and said it could be many different things. After more questions from me around localisation, he said that the lesion looked small and was contained within the prostate so, yes, it did look like it was localised, if it was anything at all. I was temporarily reassured, but then thought he may be saying this to stop me being overly concerned prior to them knowing exactly what they were dealing with.
Am I overthinking all this?
Needless to say, I’ve been wobbled by the sequence of events and am now worrying that a few months into my marriage I may be rendered impotent…. Or worse!
Edited by member 15 Nov 2016 at 17:12
| Reason: Not specified
Martin ------------------- You never know how strong you really are until being strong is the only choice you have. |
User
Hello Martin and welcome.
Are you over thinking it? Possibly, but also naturally. You've just got married and this has come along and rocked your boat.
Becoming impotent is bound to be at the forefront of your mind, given your newly married state but until you have it confirmed exactly what the problem is then it's wasted energy. No good saying "don't worry" because you will but I would try not to look on the black side at this stage.
When that diagnosis is first given to us many of us will do what you did and google the possibilities and therefore frighten ourselves half to death. Doctor Google is not your friend.
I am sure that you will have others along to reassure you soon. We have something called The Toolkit on here that is full of information and it can be downloaded from the Publications section.
Hang in there until the "experts" come along for you. We have many members who are full of knowledge.
Best Wishes
Sandra
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We can't control the winds - but we can adjust our sails |
User
Just a quick note on one of your final comments, that perhaps the consultant just said that to make you feel okay until you know better. My instinct is that consultants don't do that - if anything the opposite is true. Under NHS codes they are obliged to give frank answers to direct questions and not sweeten the pill. In fact, we are more likely to hear about doom & gloom appointments that frighten patients half to death. Lesions picked up on a scan indicate a problem that needs to be checked out but a scan can't tell the difference between cancer, bleeding or infection.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Thank you for your swift responses. I know I shouldn''t be thinking the worst at this stage and it''s not like me to do so. I'm OK when distracted by work or when in company, but can't seem to stop the downward thought spiral when trying to sleep or watching TV etc.
I think if my PSA was marginally high, I wouln't be so pessimistic, but 13 seems to be at the upper end for early diagnosis which, coupled with the identified lesion, makes me fear the worst.
I'm feeling so bad for my new wife. She's being an absolute rock, but I can't help thinking that this wasn't what she signed up for.
I'm so looking forward to getting my results. I need to hope for the best and prepare for the worst, I suppose. At least the uncertainty will be removed.
Martin ------------------- You never know how strong you really are until being strong is the only choice you have. |
User
Take heart, I don't think you can make a call yet.
My lesion was just an infection, I did get a spike (14) in my PSA.
Unfortunately my cancer was present but invisible to the MRI in a different part of my prostate.
That's sort of good from the treatment point of view.
Good luck.
Nigel
User
Hi Martin
Take heart that you may have found out about a potentially life threatening event and can access a vast range of treatments that will eradicate or greatly slow it down. I'm the same age as you and was thrown from the highest board into the very deep end. We all have our own pathes to lead through these difficult and very upsetting times but early detection and getting the best advice can only lead to the best outcome.
Good Luck with your treatment and stay positive.
Boyd
User
Thank you for your responses - it's reassuring to know that their are "real" people out there who have first hand experience of this process and are willing to share support and advice.
My uncertainty continues at the moment. I attended an appointment last Friday (25th), when I was meant to receive and discuss my results. However, they weren't available, despite receiving the appointment letter and two follow up text message reminders. It appears to have been an administrative error... I was initially scheduled to have my biopsy when I was in hospital for a kidney stone and stent removal procedure. However, the stone took too long to remove and the decision was taken not to carry out the biopsy as it would have increased my risk of sepsis. Consequently, an out patient appointment was made 3 weeks later. It appears the records were never amended and the results appointment was automatically triggered. The consultant was very embarrassed and apologetic, but could tell me nothing more than I already knew, i.e. PSA 13.3 and an identified, "suspicious" area on the posterior of my prostate. I'm now waiting for a phone call or letter.
I was emotionally exhausted after this as I found the psychological preparation prior to the appointment very demanding. I'm also frustrated that these things take so long. I know the NHS is under immense pressure, but a 5 to 6 week window for cancer investigation results seems excessive to me. However, I have no previous experience of these things and I'm sure there must be good reason. I do understand that there is only so much that can be done to offset the psychological impact during the waiting period, but I'm finding it very difficult to stay positive.
So far there have been 3 NHS 'errors' during my experience to date: 1. I was lost in the system when waiting to go into hospital for a kidney stent to be inserted and was only admitted when I called to enquire about my place on the waiting list (I wasn't on it) 2. My MRI scan results were never provided or discussed with me until I enquired why I was scheduled for a biopsy some 6 weeks later 3. the phantom appointment last Friday. Although a staunch supporter of the NHS, it does concern me that there can be so many errors in the management systems. I would point out that all the people I have come across from hospital porters to nurses to registrars and consultants have been wonderful and I don't think I could have received better carer to date, but the communication processes and systems in place do seem to be lacking, which concerns me greatly when lives are in their hands.
Have I just been unlucky, or is this par for the course nowadays?
Martin ------------------- You never know how strong you really are until being strong is the only choice you have. |
User
I think you have been particularly unlucky - it certainly wouldn't make me feel warm and fluffy to think that a member of my family would have any radical treatment there - I would be constantly worrying about cancellations and double bookings. Something to ask about perhaps when you finally do get sorted?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Complex journey - now awaiting biopsy results