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Biopsy result delays? Six weeks and counting

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User
Posted 12 Oct 2021 at 20:41

Update, November 17: Had my meeting with Urology today and learned that my biopsy found "only found a tiny amount of non-aggressive prostate cancer." To put it another way, the consultant said, "less than a millimeter of cancer in just one of the 24 cores." Obviously a huge relief. Am now in Active Surveillance program. At same meeting I got a sympathetic apology for the 82 days between biopsy and results meeting. (FYI, short, unofficial version of the reason for delay: it was due to the hospital's main uro-pathologist falling ill about the time I had the biopsy; they are still on medical leave and the longstanding UK-wide shortage of pathologists and pathology funding complicated efforts to make alternative arrangements for analysis.) 

Update, October 25: Still no results. I have been given a urology appointment on November 17. Apparently, this is to give me the biopsy results, 82 days after the biopsy.  

Update, October 14, 2021: I called Urology at UHCW today and was told that my biopsy results came through "a few days ago" and the urologist will be reviewing them with his staff tomorrow. That will be exactly 7 weeks since the procedure. I should get results on Monday. Thanks to all who gave me perspective and encouragement.

Original question posed on October 12: I'm curious if anyone else is experiencing a long wait time for biopsy results? I had a transperineal prostate biopsy August 27. No results as of October 12.

I called the hospital after four weeks and they said there was a shortage of pathologists and a backlog. 

Not sure if this is a national situation or a local problem (I'm in Coventry), but have to say I'm finding it a bit stressful.

Stephen

Edited by member 18 Nov 2021 at 12:26  | Reason: Update, result

User
Posted 29 Oct 2021 at 15:37

My friend aged 60, had his trans-perineal biopsy about three weeks ago at the George Eliot Hospital, Nuneaton.

He’s been called in for his “Dear John” meeting with his consultant next Wednesday, so not as bad as Walsgrave Hospital, Coventry, just down the M6.

I think despite your months of anxiety, your prognosis and outcome are unlikely to be affected by the delay of your diagnosis and commencement of treatment, as most PCa is slow-growing.

My mate is livid, as having requested a PSA test from his GP, he was given the brush-off by his doctor after the usual inane questions - “Have you got any symptoms? Then in that case you don’t need a PSA test”.

I had no “symptoms”, but I still had cancer! My mate was fastidious enough to pay £25 for a private postal PSA test, which came back at with a PSA of 13 odd. He is considering taking action against the dopey GP.

I find the level of ignorance about PCa amongst many GPs to be staggering. Another friend, age 50, asked for a test, but the GP sent him away with an information leaflet rather than a blood test form!

Do let us know how you get on in three weeks, and the best of luck.

Cheers, John.

Edited by member 30 Oct 2021 at 01:52  | Reason: Not specified

User
Posted 12 Oct 2021 at 23:43

As a general rule, two weeks is about as long as this should take. I don't know if things have changed recently but six weeks sounds too long to me. Keep hassling the hospital, consider PALS.

Dave

User
Posted 13 Oct 2021 at 09:01

I have had 2 biopsies at Addenbrookes, Cambridge, one in June and another in September, and I was given the result in both cases in under a week

User
Posted 13 Oct 2021 at 14:32
I had to wait for several weeks for my post-operative biopsy results from the Royal Surrey County Hospital.

They also blamed a shortage of pathologists and a big backlog.

My mate just had a biopsy and the samples are likely to go to the path lab at Walsgrave, like yours.

I’ll tell my friend not to hold his breath for his results any time soon!

Best of luck.

Cheers, John.

User
Posted 13 Oct 2021 at 15:28

Lack of pathologists is a common theme.   6 weeks sounds grossly excessive, 2 weeks is more normal and in my opinion it should be 2 days. 

Labs can move samples to other labs and you might think places with large backlogs would have a contingency plan.

It feels a conflict as to whether you dare make too much noise when you depend on their services.

If it was me I'd be trying to find avenues to make it known.  You often find hospitals and their doctors have Twitter feeds where you could make it known, perhaps even the local paper or radio station.  There are doctors such as @ProfKarolSikora (his Twitter feed)  who are campaigning to get cancer treatment speeded up.

You could also contact a nurse or someone  on Prostate Cancer UK.  Such information should be valuable to organisations who support patients.

I don't know what your psa, MRI or symptoms are is but I would be thinking, unwisely, in my optimistic moments that they've put it in the non-urgent category because they suspect it's not urgent.  However that's just a crumb of comfort and not the answer until proven.  I would add that prostate cancer in some cases can be non-urgent and is often regarded as slow growing, but not necessarily.

Good luck
Peter

Edited by member 13 Oct 2021 at 15:30  | Reason: Not specified

User
Posted 13 Oct 2021 at 17:24
Looking back I think ours took about 2 weeks. If I had been waiting since August I would be climbing the walls. Waiting for results was the very worst bit so you do have my sympathies.
User
Posted 14 Oct 2021 at 02:09

Wow! That is such a long time to wait, we were definitely within 2 weeks. After MRI we didn’t get results only an appointment for bone scan….we freaked out and when still heard nothing 5 days later I had a breakdown on the phone and consultant called within 5 minutes! It’s so sad/bad that it comes to that but the waiting is the worst part of this whole journey. I would be phoning every day and making them aware of how the waiting is affecting you. Really hope you hear something very soon

User
Posted 29 Oct 2021 at 22:43

Listening to your thread find it truly shocking I was lucky to start treatment 2 weeks after my biopsy  good luck to you and hope things go to plan  gaz 61 👍

User
Posted 29 Oct 2021 at 23:45
Waiting times differ in various parts of the country at the best of times and although cancer treatment, particularly urgent cases, has been given some priority, the pandemic has added to the pressure and delays in some areas.
Barry
User
Posted 13 Nov 2021 at 10:40
Hi Stephen, Are you aware of the NHS 28 day "Faster Diagnosis Standard"? It was put in place in 2019 to ensure that patients find out within 28 days of referral whether they have cancer or not.

https://www.england.nhs.uk/cancer/faster-diagnosis/

I would say your wait is unacceptable. We were in a similar boat to you. My husband had to wait 63 days between urgent referral and diagnosis.

I'm complaining to PALS. Luckily my husband didn't have a very aggressive cancer (still Gleason 4 + 3 though) but really feel for those people out there where time is absolute essence. They shouldn't have to wait the time we did. Two months of waiting was absolute torture, especially because the MRI scan showed Pi-RADS 5 on Sept 3. We didn't get diagnosis until late Oct.

Maybe mention the "faster diagnosis" policy to your local trust? Maybe that will help get things moving?

User
Posted 13 Nov 2021 at 14:04

Aw sorry yes. Didn’t see you were in Wales. Maybe they have similar wait time guidelines/targets? Good luck with everything. Really hope you get sorted soon

User
Posted 20 Nov 2021 at 09:49

Hi.

The comment below is just to highlight how the results of biopsy could be variable (misleading ?) and also to find out how such variation might be between two biopsies.

My 1st biopsy of 24 core was declared negative but as it did not match with MRI results (t3a) the second biopsy was taken that gave G7 (3+4).

It took 75 days between two biopsy. I wonder how could such a wide results come about? Different urologist, sampling techniques and/or length between two biopsies?

Thanks

User
Posted 20 Nov 2021 at 17:10

I am wondering, Fred, whether the first biopsy you had was under a local anaesthetic  and the second one under a general? The reason I ask that is that my first biopsy in June was a local one and though it found cancer (some grade 2 but mostly grade 1) it was only found in a small area of my prostate (3 out of 13 cores). When I had the second biopsy under a general anaesthetic in September it found that the cancer was throughout my prostate (16 out of 19 cores). The cancer was still , fortunately  mostly grade 1 with some grade 2.

 

Ivan

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User
Posted 12 Oct 2021 at 23:43

As a general rule, two weeks is about as long as this should take. I don't know if things have changed recently but six weeks sounds too long to me. Keep hassling the hospital, consider PALS.

Dave

User
Posted 13 Oct 2021 at 08:50
Thanks Dave - appreciate the input. We be calling the hospital today.

Stephen

User
Posted 13 Oct 2021 at 09:01

I have had 2 biopsies at Addenbrookes, Cambridge, one in June and another in September, and I was given the result in both cases in under a week

User
Posted 13 Oct 2021 at 14:32
I had to wait for several weeks for my post-operative biopsy results from the Royal Surrey County Hospital.

They also blamed a shortage of pathologists and a big backlog.

My mate just had a biopsy and the samples are likely to go to the path lab at Walsgrave, like yours.

I’ll tell my friend not to hold his breath for his results any time soon!

Best of luck.

Cheers, John.

User
Posted 13 Oct 2021 at 15:28

Lack of pathologists is a common theme.   6 weeks sounds grossly excessive, 2 weeks is more normal and in my opinion it should be 2 days. 

Labs can move samples to other labs and you might think places with large backlogs would have a contingency plan.

It feels a conflict as to whether you dare make too much noise when you depend on their services.

If it was me I'd be trying to find avenues to make it known.  You often find hospitals and their doctors have Twitter feeds where you could make it known, perhaps even the local paper or radio station.  There are doctors such as @ProfKarolSikora (his Twitter feed)  who are campaigning to get cancer treatment speeded up.

You could also contact a nurse or someone  on Prostate Cancer UK.  Such information should be valuable to organisations who support patients.

I don't know what your psa, MRI or symptoms are is but I would be thinking, unwisely, in my optimistic moments that they've put it in the non-urgent category because they suspect it's not urgent.  However that's just a crumb of comfort and not the answer until proven.  I would add that prostate cancer in some cases can be non-urgent and is often regarded as slow growing, but not necessarily.

Good luck
Peter

Edited by member 13 Oct 2021 at 15:30  | Reason: Not specified

User
Posted 13 Oct 2021 at 17:24
Looking back I think ours took about 2 weeks. If I had been waiting since August I would be climbing the walls. Waiting for results was the very worst bit so you do have my sympathies.
User
Posted 14 Oct 2021 at 02:09

Wow! That is such a long time to wait, we were definitely within 2 weeks. After MRI we didn’t get results only an appointment for bone scan….we freaked out and when still heard nothing 5 days later I had a breakdown on the phone and consultant called within 5 minutes! It’s so sad/bad that it comes to that but the waiting is the worst part of this whole journey. I would be phoning every day and making them aware of how the waiting is affecting you. Really hope you hear something very soon

User
Posted 14 Oct 2021 at 09:53
Thanks so much for your sharing your experience, and the words of encouragement. The feedback from this community has given me the encouragement I needed to take action.
User
Posted 14 Oct 2021 at 09:53

Thank you. that's very helpful.

User
Posted 14 Oct 2021 at 09:56

Thanks for sharing your thoughts and experiences. Very helpful. 

I am now escalating my attempts to get answers.

Stephen

User
Posted 27 Oct 2021 at 16:40

Result. I just learned that I have prostate cancer - 61 days after my biopsy. I think this is two weeks after Urology got the results. I only found out by sending a letter to my GP. To his credit he called me the same day he got the letter. I have a meeting with Urology in three weeks.

That "Biopsy Results" meeting with Urology will be 82 days after the biopsy. That means any treatment is unlikely to start until at least 90 days after biopsy, 40 days after biopsy results were processed.

I am sharing these numbers in case anyone else out there is wondering how quickly/slowly things are moving right now in the NHS in terms of prostate cancer diagnosis and treatment.

(TBC: I am not blaming anyone in the NHS for this extended timeframe; in my assessment the delayed responses are almost entirely due to chronic underfunding by central government which goes back years.)

To recap, I had my biopsy in August and was told I would learn the results in about three weeks. The reality was eight weeks, and another three to get the urologist's take on how bad they are.

I truly hope this is an isolated incident and everyone else gets their results faster. 

Stephen

User
Posted 29 Oct 2021 at 15:37

My friend aged 60, had his trans-perineal biopsy about three weeks ago at the George Eliot Hospital, Nuneaton.

He’s been called in for his “Dear John” meeting with his consultant next Wednesday, so not as bad as Walsgrave Hospital, Coventry, just down the M6.

I think despite your months of anxiety, your prognosis and outcome are unlikely to be affected by the delay of your diagnosis and commencement of treatment, as most PCa is slow-growing.

My mate is livid, as having requested a PSA test from his GP, he was given the brush-off by his doctor after the usual inane questions - “Have you got any symptoms? Then in that case you don’t need a PSA test”.

I had no “symptoms”, but I still had cancer! My mate was fastidious enough to pay £25 for a private postal PSA test, which came back at with a PSA of 13 odd. He is considering taking action against the dopey GP.

I find the level of ignorance about PCa amongst many GPs to be staggering. Another friend, age 50, asked for a test, but the GP sent him away with an information leaflet rather than a blood test form!

Do let us know how you get on in three weeks, and the best of luck.

Cheers, John.

Edited by member 30 Oct 2021 at 01:52  | Reason: Not specified

User
Posted 29 Oct 2021 at 22:43

Listening to your thread find it truly shocking I was lucky to start treatment 2 weeks after my biopsy  good luck to you and hope things go to plan  gaz 61 👍

User
Posted 29 Oct 2021 at 23:45
Waiting times differ in various parts of the country at the best of times and although cancer treatment, particularly urgent cases, has been given some priority, the pandemic has added to the pressure and delays in some areas.
Barry
User
Posted 08 Nov 2021 at 19:25

Thanks for the info - I had to ask my GP for my first PSA test. He should have thought to order the test the first time I told him my younger brother had prostate cancer (apparently having a brother with PCa doubles the chances you will have it).

Will be interesting to hear what sort of treatment they suggest - they've had many weeks to think about it ;-)

Stephen

 

User
Posted 11 Nov 2021 at 17:19

Any word on an oncologist yet? I'm a week away from the biopsy results meeting with Urology. I am not clear when or where in the process an oncologist gets involved.

BTW, thanks so much for the blog - very, very helpful.

Stephen

User
Posted 13 Nov 2021 at 10:40
Hi Stephen, Are you aware of the NHS 28 day "Faster Diagnosis Standard"? It was put in place in 2019 to ensure that patients find out within 28 days of referral whether they have cancer or not.

https://www.england.nhs.uk/cancer/faster-diagnosis/

I would say your wait is unacceptable. We were in a similar boat to you. My husband had to wait 63 days between urgent referral and diagnosis.

I'm complaining to PALS. Luckily my husband didn't have a very aggressive cancer (still Gleason 4 + 3 though) but really feel for those people out there where time is absolute essence. They shouldn't have to wait the time we did. Two months of waiting was absolute torture, especially because the MRI scan showed Pi-RADS 5 on Sept 3. We didn't get diagnosis until late Oct.

Maybe mention the "faster diagnosis" policy to your local trust? Maybe that will help get things moving?

User
Posted 13 Nov 2021 at 14:04

Aw sorry yes. Didn’t see you were in Wales. Maybe they have similar wait time guidelines/targets? Good luck with everything. Really hope you get sorted soon

User
Posted 16 Nov 2021 at 10:31

I was not aware of the NHS 28 day "Faster Diagnosis Standard" so thank you very much for telling me about it. I have put it in my notes for tomorrow's "big reveal" meeting in which someone will tell me the results of the biopsy that was ordered 132 days ago and performed 81 days ago. Stephen

User
Posted 20 Nov 2021 at 09:49

Hi.

The comment below is just to highlight how the results of biopsy could be variable (misleading ?) and also to find out how such variation might be between two biopsies.

My 1st biopsy of 24 core was declared negative but as it did not match with MRI results (t3a) the second biopsy was taken that gave G7 (3+4).

It took 75 days between two biopsy. I wonder how could such a wide results come about? Different urologist, sampling techniques and/or length between two biopsies?

Thanks

User
Posted 20 Nov 2021 at 10:07
My sincere sympathies on having to have a second biopsy Fred. While I found the biopsy itself was relatively painless, I had complications due to blood clots that put me in hospital for a few days. I am not keen on getting another one.

Your question is a good one and I'm sorry I can't answer it. I'm surprised the urologist did not address this.

Have you called the Prostate Cancer UK's Specialist Nurses? (0800 074 8383). In my experience they were very helpful (and sympathetic).

Stephen

User
Posted 20 Nov 2021 at 10:21

Very sorry to hear you fell through the cracks. I think this is happening a lot - and IMHO this is due to the underlying structure of care being chronically underfunded for many years so that by the time we reached the end of 2019, things were stretched to the point where holes were appearing. Then along came Covid and the holes got bigger.

For example, in 2018 and 2019 several studies showed there was a "drastic shortage" of pathologists, especially histopathologists (the ones who analyse biopsy samples). Fast forward to 2021 and all it takes is for one uro-pathologist to be off work to delay results by months. As my urologist said on Wednesday, roughly translated: "you can't buy a pathologist right now. even if you have a lot of money."

One of the main implications for patients is that we have to our own health advocates, unafraid to speak up, but also prepared to reach out and ask for help. (For me, just posting in this forum has helped me maintain perspective and some level of hope.)

Good luck on December 21.

Edited by member 20 Nov 2021 at 10:22  | Reason: Not specified

User
Posted 20 Nov 2021 at 17:10

I am wondering, Fred, whether the first biopsy you had was under a local anaesthetic  and the second one under a general? The reason I ask that is that my first biopsy in June was a local one and though it found cancer (some grade 2 but mostly grade 1) it was only found in a small area of my prostate (3 out of 13 cores). When I had the second biopsy under a general anaesthetic in September it found that the cancer was throughout my prostate (16 out of 19 cores). The cancer was still , fortunately  mostly grade 1 with some grade 2.

 

Ivan

 
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