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User

Posted 02 Dec 2021 at 09:11

After having continuous blood in my my ejaculations and elevated PSA of 2.9 from 1.2, just 6 months earlier, I was referred to urology.

The appointment with a consultant didn’t happen as expected (they called early) but I was scheduled for an MRI, which happened on November 1st.

4 weeks later I haven’t had any MRI results but I’ve been booked for a biopsy next week.

Its been over 2 months since I first spoke to my GP, and I’ve gone from concerning PSA to Mri to Biopsy without any explanations or discussions.

I'm obviously really worried about what all this means.

Is this the normal situation?
Jon

User

Posted 02 Dec 2021 at 09:21

I don't think that's what should happen. In my case, GP referred me to the local hospital where I had MRI then a biopsy on consecutive days. I had a follow-up there a week later and was immediately referred to a specialist hospital, where I had my first appointment two weeks later. This was pre-pandemic, but I don't think you should be waiting this long.

User

Posted 02 Dec 2021 at 11:02

You should have had an appointment to explain to you your MRI result and what's happening next as a result of it.

I would call the hospital and ask to speak with the urology clinician nurse specialists, and explain that you don't know what's going on and you've had no appointment. Hospitals are very short of clinicians, but this shouldn't happen.

User

Posted 02 Dec 2021 at 11:43

Similar happened to us, no results from the MRI just a phone call to book my OH in for a bone scan! It is such a worrying time when you just don’t really know what is happening. Definitely ring the hospital though to see if they can give you any information. They should have your PIrads score but realistically you probably won’t know anything for sure until after the biopsy. Fingers crossed that all will be ok 🤞🏼

User

Posted 02 Dec 2021 at 12:07

Thanks everyone,

I did phone the hospital yesterday, but all they say is that they’ve passed the message to the consultant and then I don’t hear back.

I called last week to ask about the MRI results, and again yesterday to ask about the Biopsy appointment that has just arrived. Each time I don’t get any follow up.

my family are worrying like crazy and constantly asking me what’s going on, and of course so am I.

the trus biopsy is on Monday, hopefully things will become clearer then, but I just hope I then won’t have to wait again without knowing when the follow up will be. I’ve been in this situation for 2-3 months now.

User

Posted 02 Dec 2021 at 15:51

If nothing happens before Monday, I would suggest going in for your appointment early, and make it clear you aren't having any procedure until you've had a consultation to explain what's happening.

Now this could back-fire and punt your biopsy into the distance, so you'll need to consider that, and decide if you want to play it that way or not.

User

Posted 02 Dec 2021 at 17:52

Its archaic and disrespectful for professionals to keep you in the dark.

Personally my policy is no decision about me, without me.

Cheers

Bill

User

Posted 02 Dec 2021 at 20:58

The medics are not doing a good job here. I think it may be COVID related. For me it was GP first, they referred me on cancer pathway. Urologist at hospital booked me for an MRI. Now I think I then got four hospital appointments letters on the same day, one for MRI results, one for biopsy, one for bone scan and one for final results meeting. If the MRI had been clear I assume other appointments would have been cancelled. I can believe your MRI results meeting has been lost in the system because of COVID, but really that needs to happen even if only by phone, you can't really be expected to give informed consent to a biopsy if you have not got all the information.

Dave

User

Posted 24 Jan 2023 at 15:40

It's been a while since I posted, but I thought I should give an update just in case it helps someone with similar symptoms....

It's now been nearly two years and I still have bloody seamen 100% of the time, but recently it was discovered that I have prostate stones....

This was seen on a CT scan and then confirmed with an ultrasound....

I had a lot of tests to get to this point, an initial Ultrasound that didn't find anything, 3 MRI's, a biopsy, a cystoscopy, and a CT scan....

Nothing sinister has been found.

A lot of the symptoms that I was also suffering, such as blood in urine, feeling like I need to pee constantly, waking through the night, and groin pain, seem to have lifted quite considerably.

I can't say for sure whether it has helped, but I quit coffee, limited tea to 1 or 2 a day, and instead drink a lot of water.... I have a pint of water first drink of the day.....It could be a coincidence but my symptoms got better shortly after making this change.

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