Seem to have fallen through the cracks - no feedback after biopsy

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I've joined this forum even though I haven't officially been informed that I have prostate cancer. I'm 62 years old and single

I had urinary tract symptoms from the start of 2021, which got progressively worse. By the summer frequency had increased, flow rate had diminished and I was getting a constant medium grade feeling that I needed to pee with some stinging/ burning sensations.

Phoned my GP late August after a night when I had to get up frequently to pee. Nurse practitioner thought it might be cystitis so I had a course of antibiotics, which made no difference.

Phoned the GP again. This time spoke to a Doctor. He told me to have PSA and Liver blood tests, to give a urine sample to test for infection, to take another course of antibiotics and then go back for another PSA blood test

The 1st PSA test came back raised at 11 (13 Sep 2021), Liver blood test was normal, Urine sample clear (no infection)

A week later, after I'd finished another course of antibiotics, the 2nd PSA was 12 (circa 20 Sep 2021), so I was referred to the suspected prostate clinic at Kings College Hospital

Before attending the clinic, I had a telephone consultation with a Prostate Nurse Specialist at the hospital. I was told that my symptoms were probably caused by a lower urinary tract issue, so I was referred to general urology.

My 1st Appt with urology was on 15th October. I had a flow rate test. They said the flow rate was acceptable. I peed out 307ml, but 220ml still left in the bladder after I thought I'd fully voided

I had a digital examination. Urologist said it felt OK, so with the theory that it probably wasn't cancer, I was told to have a repeat PSA blood test in November.

3rd PSA blood test 11th Nov 2021 came back as 13 (told the result on 24th Nov 2021 - MRI prostate requested)

Had an MRI prostate on 26 Nov 2021

2 Dec 2021 telephone consultation with the urologist. MRI showed a lesion at the base of the prostate on the right PIRAD=5. The seminal vesicle on the right had been taken out and the other seminal vesicle was atrophied. In addition I have a big aneurysm of my right common carotid artery. The radiologist recommended that I have a CT angiogram to look at that in more detail.

Had a prostate biopsy on 7th Dec 2021

Had a CT angiogram on 21st December 2021

No feedback from the biopsy or angiogram as of now.

On New Years Eve I got an appointment letter for a PET CT, which I guess I wouldn't have had if there wasn't cancer

12 Jan 2022. Had PET CT

I now have an appointment with Urology Oncology on 1st March 2022, but have not received any verbal or written information on the scans and tests I've had since the prostate MRI

It seems obvious to me that fast-track to treatment is not thought to be helpful in my case, so my mind is veering towards worse case scenario of cancer spread beyond the prostate and seminal vesicles.

I do have an appointment to go back to general urology on 11th Feb 2022. this was sent to me after the October 15th consultation and I guess it would have been to officially discharge me. I will still keep the appointment to see what's going on.

In addition I still have dire urinary tract symptoms, though improved a bit from where they were when I contacted the GP last summer. The urologist I saw in October prescribed Tamsulosin, but I have been reluctant to take it (has anyone got any advice on this)

Apart from being very low, I feel generally OK. Still eating normally. Not sleeping very well though - I have to get up at least once a night to pee and often can't go back to sleep once I go back to bed

Any thoughts would be gratefully received.

Cheers

Grundo over 3 years ago

Hi NPJ

Sorry to hear, u have quite a lot going on. PSA not too high, probably the most important is the MRI which is probably showing cancer but can't be said for sure until u get biopsy result, strange why they can't give u that info. when u go back in February they should give u the biopsy result

Hopefully any cancer is contained within the gland which would make it easier to treat and potentially curable. You mentioned that u thought it might have spread but if that was the case surely they would have called u back already and started you on some HT.

Hope all goes well and post back when u have some more info.

Perhaps others will post with additional advice

Regards

Stev

NPJ over 3 years ago in reply to Grundo

Thanks for getting back to me. I think a big part of my anxiety is down to the unpleasant UT symptoms, which I've had for months. It's really affecting my quality of life. While I thought I was dealing with cystitis or prostatitis or some other non cancerous cause I had hope that things would eventually settle down and improve. My prostate isn't particularly enlarged as far as I can gather, so I don't really understand what is causing my symptoms unless the cancer has maybe got into the bladder.

What particularly worries me is the prospect of having to live with a urinary catheter permanently in situ.

Just having glanced through the posts on here, I can see that the majority of men seem to have no symptoms. Looks like I've been unlucky

Grundo over 3 years ago in reply to NPJ

When u next see them ask for a copy of the MRI report and ask them the size and proximity of the tumour within the gland and if it's likely be to be causing your urinary issues

Gleeson score from biopsy would indicate the aggressiveness of tumour.

Steve

Andy B over 3 years ago in reply to NPJ

Hi there,

I’m at a similar stage to you and have had symptoms for months. I went to see a urologist in 2015 who diagnosed overactive bladder syndrome at the time. I took a recommended drug but it caused drowsiness so stopped and tried to control with limiting caffeine, holding before urinating etc.

In December 2021 I started with lower back and abdominal pain and they found some blood in my urine. I started taking darifenacin which was then doubled on the 10th of Jan but made no difference. I had a CT scan for possible kidney stones on the 20th of Jan which returned an enlarged prostate but no kidney stones. I’ve also got raised PSA scores and have been referred to prostate assessment centre. I’ve been prescribed tamsulosin and feel this has made a difference so would personally recommend this as it has helped with limiting visits to the toilet at night as well as during the day.

I’d also recommend limiting caffeine during the day and see if that helps? In the meantime I hope you get some support asap and we can support each other on here.

NPJ over 3 years ago in reply to Andy B

Thanks very much for that. You're right, we need to support each other - real experience of various treatments is so helpful in making choices.

I think I're reached the stage where I will try tamsulosin. I was reluctant as I don't want to be on medication for the rest of my life, but I've reached the stage where I have to accept that in order to have a better quality of life I will have to at least try it.

I hope your prostate assessment comes up with some relatively benign cause for your raised PSA

NPJ

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