Telephone consultation

User

Posted 05 Nov 2020 at 21:32

Hello, my name is Peter, and I'm 52, usually in good health. My problem started off being unable to pass urine, and having to have an emergency nurse come out to fit a catheter. This was removed after a week, after being on a fit flow. I was also treated for 2 water infections. My doctor examined my prostate and said it was enlarged, and because of my anxiety, I was rushed through to see a specialist. He examined me and said it was normal for my age, but because of the past problem, he sent me to see a bladder specialist, who put a camera up my penis, and did a bladder scan. He said bladder looked normal, but prostate looked enlarged. He sent me for blood test where my psa level was 5.5, and sent me for an MRI scan. We hadn't heard anything for about 8 weeks, so my wife left a message on the consultants phone to chase my results. I have since received a telephone consultation appointment for next week, but its with an oncologist, and I know these deal with cancer, and now I'm really scared about the fact I could have cancer, and they are going to give me bad news over the phone

User

Posted 17 Nov 2020 at 20:02

Originally Posted by: Online Community Member

UPDATE.

Telephone consultation with the consultant didn't go as well as would have liked.

Been told that my prostrate is 4 times its size, about 80g. And that my psa of 5.5 is consistent with the size of the prostrate.

However I also have a 2.2cm lesion that has been classed a 5 for serious investigation of possible cancer. So I'm being booked in for a biopsy. He cannot say when it will be but he's marked it as urgent.

I'm so scared, I hope it won't take as long as the 8 weeks its taken to get my MRI results. I mistakenly thought that because it was taking so long to get my results it cannot be bad news!.....how wrong i was!

Its hard to fuction with worry knowing you've got something possibly life threatening growing inside you.

How long does this whole process take? I worry that during all this waiting whatever it is I have wrong is just getting worse!

It varies from region to region. Some regions slowed a lot due to COVID wave 1. Hopefully systems are in place now to protect these essential services during wave 2. There is supposed to be a 14 day rule for cancer referrals, but I'm not sure if that applies to testing as well.

But don't get yourself into a state. Prostate cancer is usually very slow growing (years and years, not weeks or months). Also, if your PSA was <4 it would be classified as 'normal'. 5.5 is not massively high. (Although PSA really isn't a brilliant indicator on it's own.)

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 26 Dec 2020 at 09:47

Hi Peter,

It can be a worrisome time, but if the system is working then the correct diagnostics will have to happen, but maybe not in the right order; the first thing I had was a full body scan as my PSA was 22.1, without speaking to anyone other than a radiologist about the nastiness they were looking for. That is NOT the case for you, from the information supplied you are better off than I am.

Find out the details of your urology clinic from the letter, you should have details of the specialist nursing team and speak to them directly to talk.Things may be moving quickly and you may not have been told as COVID and Christmas etc have loused things up and may not answer the phone today unfortunately. The nurses will be able to talk, consultants don’t have the time to in my experience so far. Clinic timetables will be scheduled and patients will fit into that cycle.

Positivity you can get hopefully from your family and friends, PC isn’t like a SCI-FI monster were you transform in seconds into an alien lump, it usually moves slowly and silently that’s why it’s a B’strd?

You are aware of it now, learn about it and don’t be afraid of it; humans have knives, chemical warfare and x-ray guns and knowledge; it should be afraid of us?

Buzzy

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User

Posted 05 Nov 2020 at 23:06

Hi Peter.

Have you had a biopsy? I don't think they would normally be able to give you a conclusive diagnosis without one.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 05 Nov 2020 at 23:50

No I've had no biopsy. Just the mri scan that I assume will be what next weeks telephone consultation will be about. I.e results. Just so worried. Im clinging to the hope that they wouldn't give bad news over the phone. But with covid I'm now not quite so sure, due to restricting hospital face to face appointments. Also Very concerned because my original consultant was a urologist and my new consultant I'll be speaking too is a urologist specialist in oncology.

User

Posted 06 Nov 2020 at 00:22

An MRI can't normally diagnose cancer - all it can do is indicate that a biopsy might be advisable.

As far as the change of urologist goes, it could simply be a triage thing - the first urologist specialises in bladders and the second one specialises in prostates.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 06 Nov 2020 at 06:07

Looks like you’re heading for a biopsy to determine the cause of your enlarged prostate and increased PSA level.

If you do have to have a biopsy, try to get a transperineal one, rather than a rectal TRUS (up the bum) one which is cheaper, but less accurate and more likely to cause infection.

Best of luck.

Cheers, John.

User

Posted 06 Nov 2020 at 07:43

Many thanks for the advice. I suppose its just a matter of staying calm and waiting for the phone call. Might give the doctors a ring and see if I can get anything to calm the nerves.

User

Posted 06 Nov 2020 at 11:37

Originally Posted by: Online Community Member

As far as the change of urologist goes, it could simply be a triage thing - the first urologist specialises in bladders and the second one specialises in prostates.

Yes, you don't have a consultant during the diagnosis stage - you're under the Multi-Disciplinary Team (MDT). They meet once a week and discuss all cases which have any changes (such as new test results available), and collectively decide what to do next, more tests, or which treatments to offer you, or to discharge you. Which one actually feeds back the MDT decision to you is in my experience somewhat arbitrary, but the point is they are feeding back the view of the MDT (urologists, oncologists, radiologists, andrologists, CNS's, etc). There were 35 members of my MDT. In some difficult cases (mine!), cases can go up to a Super-regional MDT (SMDT) which are the lead consultants from the MDT's of many hospitals.

In the light of COVID, some of this has gone wrong because not all the staff have been available, and that may also be why you see someone different. I think the fact that you've waited 8+ weeks is an indication they're under pressure.

User

Posted 06 Nov 2020 at 15:41

Originally Posted by: Online Community Member

Yes, you don't have a consultant during the diagnosis stage - you're under the Multi-Disciplinary Team (MDT)

... in some areas. In our area, you are referred to a urologist first for assessment & diagnostics and then might be changed to a different urologist (or an oncologist if you opt for RT or have been diagnosed late). In the South-West, men are referred to a private company who will run biopsy & MRI if they think it necessary and only if cancer is found is a referral made to the hospital. Like everything else, it is a postcode lottery.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 06 Nov 2020 at 15:52

Hi Peter

Unfortunately due to covid all my the results of all of my husband’s investigations were relayed over the phone and even his consultation with the surgeon before his RALP and also afterwards with his histology.

We put every call on loud speaker and had a list of questions prepared prior to each call.

Best wishes.

User

Posted 07 Nov 2020 at 08:31

Many thanks for the reply. I suppose its just a matter of counting down the days till Thursday and trying not to worry.

User

Posted 07 Nov 2020 at 08:36

Originally Posted by: Online Community Member

Hi Peter.

Have you had a biopsy? I don't think they would normally be able to give you a conclusive diagnosis without one.

no biopsy just the mri. Waiting to hear what they say Thursday. Just finding the whole lengthy process draining.

User

Posted 17 Nov 2020 at 18:56

UPDATE.

Telephone consultation with the consultant didn't go as well as would have liked.

Been told that my prostrate is 4 times its size, about 80g. And that my psa of 5.5 is consistent with the size of the prostrate.

Its hard to fuction with worry knowing you've got something possibly life threatening growing inside you.

How long does this whole process take? I worry that during all this waiting whatever it is I have wrong is just getting worse!

User

Posted 17 Nov 2020 at 20:02

Originally Posted by: Online Community Member

UPDATE.

Telephone consultation with the consultant didn't go as well as would have liked.

Been told that my prostrate is 4 times its size, about 80g. And that my psa of 5.5 is consistent with the size of the prostrate.

Its hard to fuction with worry knowing you've got something possibly life threatening growing inside you.

How long does this whole process take? I worry that during all this waiting whatever it is I have wrong is just getting worse!

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 17 Nov 2020 at 20:20

Peter,

I feel for you, this is an anxious time.

It usually takes about 3 weeks to get the biopsy result after the biopsy. As to how long for the biopsy, that will depend on your hospital. When we could go in for appointments, most would do it there and then while you're there as an outpatient to be given your MRI result, so I hope you won't have to wait long.

Try not to worry. I know it all feels bad because you don't know what's going to happen, which leaves you imagining all sorts of bad things. I'll PM you too.

User

Posted 18 Nov 2020 at 22:32

We've all been there, Pete. The diagnosis stuff is, for most men, the most stressful part of the whole thing. Unfortunately it's likely to take a month or more for a biopsy and then the analysis of the results. All you can do is get through it a day at a time. It's horrible, but you will get through it.

Don't assume the worst. With a PSA of 5.5, if you do have prostate cancer it's overwhelmingly likely to be localised, which is a very treatable condition. Treatment is life-changing to be sure, but it's almost certainly not going to kill you.

If you're finding the stress tough to deal with don't just suffer with it; go to your GP and get something to help you cope with it.

Once you're diagnosed you'll feel a lot better about it because it removes the uncertainty.

Cheers,

Chris

User

Posted 03 Dec 2020 at 00:10

Small update

I'm still waiting for my biopsy appointment.However I have received a copy of the letter sent to my doctors regarding the MRI scan

It reads that I have a T2 no left anterior LZ. I would appreciate if anybody can understand and explain what all that means.

Thanks in advance

User

Posted 03 Dec 2020 at 00:27

I suspect that it is actually written as T2 N0 which means that the suspicious area looks like it is still contained within the prostate and the nearby lymph nodes look okay. The suspicious area is at the anterior, which is the front of your prostate (ie towards your pubic bone rather than facing your bowel) which makes it harder to reach with a normal transrectal biopsy. This might be the reason for the delay - they might prefer to do another kind of biopsy that goes through your perineum instead so that they can get a decent sample.

Despite the letter, you are still in the same situation as when you spoke to the consultant on the phone - there is a possibility of cancer and they need to do a biopsy to be sure.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 03 Dec 2020 at 00:28

Originally Posted by: Online Community Member

It reads that I have a T2 no left anterior LZ.

After the T2 does it say "no" or "n0" (zero) if it is "n0" it means lymph nodes are clear and that is good news. T2 means it has not escaped the prostate which again is good news. Left anterior is the area of the prostate it was found in. LZ I don't know, might be lateral zone which I think is an area of the prostate.

Edited by member 03 Dec 2020 at 00:29 | Reason: Not specified

Dave

User

Posted 24 Dec 2020 at 23:23

UPDATE

well been for my biopsy last Tuesday (15th December). Not the most pleasant of experiences and was very glad when it was over!

Consultant said at the time it would be 2-3 weeks before i got the results. So I was not expecting anything until after Christmas. However i received a letter from the hospital this morning advising of a telephone consultation on the 22nd January.

I'm not sure how to take this news.....

Does this mean that they have the results already?

Because of the long wait to the telephone consultation..... does this mean the results are not too bad (Surely if it was bad news, would I not have a more urgent and earlier appointment?)

or is it just a case that they have arranged the appointment ahead of the results?

Any help from anyone with experience of this would be appreciated

User

Posted 24 Dec 2020 at 23:47

They would arrange an appointment to give you the results regardless of what the news is.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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