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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

Hi 

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.

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!

 

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 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

User
Posted 25 Dec 2020 at 08:11

I understand that.... I'm just trying to summarise the length of time it takes between now and having my appointment. Surely if it was urgent I would have had an appointment sooner. I'm just trying to cling onto any positivity I can get

 

User
Posted 25 Dec 2020 at 17:50
It doesn't usually work like that. It varies from hospital to hospital but commonly, an appointment is automatically generated for 3 or 4 weeks after the biopsy - in between times, the radiographers assess the images, the pathologists are looking at the biopsy samples and then all the data is assessed and discussed at a multi-disciplinary team meeting. I guess it is possible that your results have been discussed at the MDT but more likely that they haven't met yet and it will be early January before they do.

Most NHS trusts wouldn't have the capacity to bring appointments forward if bad news or push back if good news ... it is all designed around how often the MDT meets. Also, prostate cancer diagnoses are generally not considered urgent.

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

User
Posted 25 Dec 2020 at 18:51
Although within the NHS, different hospitals can work in different ways and some are more busy than others. Twice now I have received an appointment to discuss the result of an MRI even when I have not even been given a date to have the scan. Cart and Horse come to mind! You just can't read too much into hospital times and appointments.
Barry
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

User
Posted 26 Dec 2020 at 13:02

Hi 

I just wanted to reach out and tell you that with my father, we have just been through the biopsy - phone call consultation - diagnosis - contact from Macmillan nurse process.

It started from his latest PSA test in Oct which was 5.3 which lead to MRI scan (Nov) showing a small shadow on his prostate leading to a biopsy.

My father had his biopsy on 11th Dec. He was told at the time it would take roughly 10 days for them to cultivate the cells, assess his case and provide feedback. 

Same as yourself my Dad received an email with an appointment letter for 23rd Dec for a telephone consultation. On the 23rd he was given his diagnosis and treatment plan. He had a follow up telephone call with a macmillan nurse the next day. My Dad's treatment (hormone therapy in his case), started Christmas Eve.

The date of your telephone consultation will depend on the availability of the consultant too. I doubt it reflects the nature of your case, if that helps. 

It has been a rollercoaster of a journey since Dad was told he needed a biopsy up until the telephone consultation. But now we know the plan ahead of us it puts us at ease somewhat. However the worry of the treatment and associated side effects brings a another bunch of stress. Currently as a family we are taking each day at a time.

In summary I wanted to say that you are in good hands. Try and find ways to manage the anxiety and stress. Stay in touch with family and friends which I know is difficult in this pandemic. Talking about how you are feeling will help.

User
Posted 04 Jan 2021 at 16:11
Many thanks for all your help and advice and taking the time to reply. It is all very much appreciated and does certainly help with the worry and the anxiety.

I have attempted/tried to put it all behind me for the Christmas period for the sake of both myself and my family. Now the New Year is upon us, I'm just now counting down the days now until my telephone consultation on the 22nd January and trying to get on with life without worrying constantly.

I have started to talk about it more with family and friends and it does help. When I first went down this road way back in March I didn't really discuss it as I preferred to bury my head in the sand and not admit what was going on. I am now trying to accept it all more and prepare myself for whatever the results may bring.

Thank you all and I'll update once I know the results from the Biopsy.

User
Posted 21 Jan 2021 at 17:46
Well tomorrow at 3:45 is the day of my telephone consultation. It seems a long time since the biopsy in December. Going to be a long sleepless night tonight.

Just wondered if anybody had any suggestions for questions that I may need to ask. Any comments or thoughts on this would be greatly appreciated

Thank you in advance

User
Posted 21 Jan 2021 at 20:10
Thoughts ? Your psa is low in the grand scheme of things , yes talking about it helps , I had friends who been thru the treatment which helped immensely and gave confidence on the journey , my psa was6.4 all the professionals gave me confidence on the treatment plan . In the end , I am 2 yrs after treatment going ok , all my friends are ok as well .
User
Posted 21 Jan 2021 at 23:00

Many thanks, appreciate your comments

 

User
Posted 22 Jan 2021 at 08:29

Many thanks for taking the time to chat ....  My fingers are crossed that your dad makes a full recovery

User
Posted 24 Jan 2021 at 22:34

Update from telephone consultation with the consultant.

I'm absolutely gobsmacked I haven't got any traces of cancer in the prostate from the biopsy. I really had prepared myself for bad news so wasn't expecting this..... I am overjoyed, pleased and relieved.

However he did say that there was abnormal cells that they will need to keep an eye on. I will have to have a PSA blood check every six months. he then went on to say that if my PSA blood check goes above 10 then I would have to have a further biopsy.

I am a little confused as i still have the 2.5 cm tumour and what this means and also he didn't elaborate on the abnormal cells. Sadly he wasn't the easiest of consultants to talk too.so I decided rather than continue to ask him questions I will probably speak to my own doctor in the next few days, as hopefully by that time they should have the results and hopefully they'll be able to discuss it in better detail and give me some clarification on a few questions I would like to have askedbut didn't feel able to.

Thank you once again for everybody's help and advice during this difficult and worrying journey. It has certainly been a godsend and helped me to cope much better getting advice from people who have been through the same.

 

 

 

User
Posted 24 Jan 2021 at 22:51

You don't have a 2.2cm tumour - your MRI scan showed a 2.2cm lesion which is a different thing. The lesion could have been infection or bruising - as some of us posted in Nov / December an MRI can't diagnose cancer, it can only identify areas of concern that need further assessment. It seems from your phone call that all the biopsy cores removed from the suspect area were non-cancerous so infection may be the most likely explanation now.

The abnormal cells are referred to as PIN - it is a sort of pre-cancerous state ... in some men, these develop into prostate cancer in the future but certainly not always the case.

Have a large glass of red wine and get your future regular PSA tests marked in your diary. Congratulations!

Edited by member 24 Jan 2021 at 22:51  | Reason: Not specified

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

User
Posted 24 Jan 2021 at 22:52

Good result. Know what you mean about some consultants being hard to talk to an I'm sure doing it on the phone does not help. 

I don't think your gp will be sent the full report, so may not be able to help. Still worth asking though. You can certainly ask for the biopsy report from the hospital they may charge about £10 fee, but then you can see everyrhing and Google the long words. 

Edited by member 24 Jan 2021 at 22:53  | Reason: Not specified

Dave

User
Posted 24 Jan 2021 at 23:12

As Dave said, it's most unlikely your GP will have sufficient knowledge of prostate cancer to tell you, and he won't have your hospital records either.

You could email your questions to the hospital, usually the urology secretaries, who will pass it on to the consultant.

You can ask for your hospital records, I always do. They aren't permitted to charge for them, unless you are being very unreasonable (such as asking for the same records over and over again).

User
Posted 25 Jan 2021 at 05:32

Originally Posted by: Online Community Member

You can ask for your hospital records, I always do. They aren't permitted to charge for them, unless you are being very unreasonable (such as asking for the same records over and over again).

I was charged a tenner for my pre-op hospital records as I was seeing a consultant privately (who is also a NHS consultant).

When I asked for my post-op notes, after the surgery was done by the same surgeon on the NHS, they were free!

Cheers, John.

User
Posted 25 Jan 2021 at 08:37

Rules have changed a few times on this.

I had an MRI in 1997 (nothing to do with prostate), and I asked for the images. Doctor checked, and finding I was a private patient, he gave them to me directly. As an NHS patient, I would have had to apply through the hospital, and pay some fee they deemed appropriate.

I think the 1984 or 1998 data protection act put the £10 limit on the charge for medical record (well, everything).

Later (2018?) EU directives required your medical records to be provided within 30 days of requesting, and for free. The circumstances under which health bodies can refuse to provide the data were massively reduced too.

When I've asked for my records, I always state not required within the 30 day timeframe (unless they are for an upcoming appointment), so the records department can prioritise other requests which are urgent for followup treatments.

User
Posted 25 Jan 2021 at 12:38
Whether or not they can charge you depends on the lawful basis that you are using to request the records. If requesting under SAR, they can't charge unless you are requesting a large amount of data. If you just request them without quoting the processing condition, they can charge a nominal fee.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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